My 89 year old Grandmother has had no serious bone issues or fractures. What's the secret? She swears it's from growing up on a farm and drinking fresh, raw milk, and healthy home grown foods. Maybe?
1
The first time I developed osteoporosis it was due to chemotherapy and I was nowhere near the age of menopause. It was easily seen on an X-ray and quite painful in my long bones. Hormone therapy and my usual regular weight-bearing exercise, with continued good nutrition, reversed it over two years. The second time occurred a decade later, some years after I went off hormone therapy, the risks of which increase over time. My gynecologist then put me on Fosamax, which I agreed to try even though my mother had been unable to tolerate its GI effects. Within two weeks it had done as much damage to my gut as months of chemo had done, many years before. It took about a year to heal that gut damage. In the meantime I went on the lowest-available dose of unopposed estrogen (patch), but the osteoporosis did not substantially reverse until the gut damage had healed and I could better absorb nutrients. It did stop getting worse, at least. I was on prescription Vit. D and my blood levels were monitored throughout, so we could tell when the nutrient absorption finally was improving. When my Vit. D levels got above 40 we discontinued the estrogen (which had been unopposed in my case because of serious side effects from progesterone.) That was a dozen years ago and I'm now in my late 50s. I have continued to keep my gut healthy, continued with my life-long regular weight-bearing exercise, and continue to track my Vit. D levels. All bisphosphonate drugs are now on my drug intolerance list.
2
As I get older I find that I often must choose the least harmful "health devil." It is often not an easy choice. I think the choice of not taking the osteoporosis drugs fits this phrase "the devil you know is better than the devil you don't."
We call unwanted effects from medications "side" effects. Sometimes the "side" effects have a larger impact than the purpose of the drug. Some "side" effects don't go away after you stop taking the drug. Taking or not taking a drug can be a very difficult choice. Not taking the drug is often the default choice for the patient with fear. We worry the physician's default is to prescribe drugs. We worry that the physician is making a reflexive decision or has been influenced by seductive drug companies. Patients too can be influenced by seductive drug companies. The physician's motto is "do no harm." For drug companies it is "do no profit harm" - caveat emptor - "let the buyer beware."
We call unwanted effects from medications "side" effects. Sometimes the "side" effects have a larger impact than the purpose of the drug. Some "side" effects don't go away after you stop taking the drug. Taking or not taking a drug can be a very difficult choice. Not taking the drug is often the default choice for the patient with fear. We worry the physician's default is to prescribe drugs. We worry that the physician is making a reflexive decision or has been influenced by seductive drug companies. Patients too can be influenced by seductive drug companies. The physician's motto is "do no harm." For drug companies it is "do no profit harm" - caveat emptor - "let the buyer beware."
17
This article is misleading and patronizing. The drugs aren't just shunned because of irrational fears of rare side effects. I was in my early 50's and diagnosed with osteoporosis in my spine. The doctor prescribed Boniva which I took after researching it the best I could, and understanding the occurrences of the most awful side -effects were fairly rare. In the first month I started to experience extreme exhaustion which I didn't associate with the drug. By the second month I had pain in my spine, my hips, ribs, sternum, elbow and the bones in my feet. It became difficult to bend over, sit down, stand up, walk, get in and out of bed, get dressed, open heavy doors, drive ( I couldn't turn the steering wheel without pain). I was exhausted and found it hard to be anywhere I had to sit up for an hour. My husband figured out it was the drug. And NO ONE then is of any help in managing the drug's side effects. The doctor, the call-in nurse, the pharmacist could not help. The pharmacist said it couldn't be the Boniva. No one knew how long it would last. Any official commentary from the drug company said the pill should be out of your system in a month. It took four months for the effects to subside, for me. There are more than the simplistic reasons stated in the article for people to decide to stop the drugs. If the article was at all balanced and refrained from portraying people(mostly women) as irrational it might have been more useful. We are not idiots.
37
I was diagnosed recently- someone from my doctor's office called before I saw my doc pushing prolia. I had read about all drugs. I was horrified by the side effects the number of deaths reported to the fda for prolia(4500 to date). Death= the top side effect= femur fractures, ONJ, high/ low calcium and are high also. Prolia has a black box warning for hypercalcemia. Numerous women are suffering terrible side effects from prolia. It depresses the immune system leaving you open to severe infections. My neighbor's friend has an itchy rash over her entire body for over a year- longer than the 6 months it takes for the drug to stop being active. Many victims didn't have side effects until after several shots when their whole immune system began to fail. The side effects from these drugs aren't as rare as some people would like you to believe and they are devastating. Many doctors either wouldn't speak to these patients when they needed help for their side effects or told them they weren't due to prolia even though most of the side effects were listed.Something is VERY wrong with all of this! I'm terrified of taking any osteoporosis drugs. I have been advised on some that may be safe for me but it's not an emergency so I won't be making any decisions at this point until I know for sure what is causing mine. I also drank a lot of milk and vitamin d in the supposed crucial years and I was very active but this did NOT prevent osteoporosis.
19
I saw my mother's spine do an S curve along always needing her dentures adjusted, with fractures appearing towards her final years. Dr. Take this never thought to take her off these meds she was on for 12 years (you don't want to get osteoporosis he said with each visit). She was way too young to be old at 74, for she had body of a frail 85 year old. She was never asked about her diet and excercise.
6
Article ignores the fact that many dentists now refuse to treat women on the anti-osteoporosis meds.
18
I have osteopenia although I exercise a lot, take vit D and foods rich calcium. I was reluctant to take biphosphonates but several months ago I decided to start taking them. After taking one only pill (I had to take one per month) I started with a strange thigh pain.At first I didn't think there was any relationship with the biphosphonate but after stopping doing certain exercises that I thought might be related to the pain, I decided to look it up on the internet and found the new warning by the FDA. I decided that I won't take any drug for osteoporosis.
7
After 2 years' treatment with Forteo and a follow-up treatment with Prolia, the bone density of this 76-year-old man increased about 17% so that I went from osteoporitic to osteopenic. My physician, Pamela Taxel at UConn Muscular-Skeletal Institute, knew the science and I am the beneficiary.
4
I have been a physical therapist for over 35 years and specialize in osteoporosis. I have done extensive research in this field and the evidence is indisputable that lifestyle changes, particularly targeted exercises and proper nutrition, strengthen the skeleton. I was able to reverse my own osteoporosis in this way without medication. It continues to baffle me why prescribing medications with all their possible side effects are typically the first line of action taken by physicians. The majority of hip fractures occur in the frail elderly. By making a lifelong commitment to staying active and improving your balance, many serious injuries can be avoided. There is abundant evidence in peer-reviewed journals that support this statement. Osteoporosis drugs have a role, but in the absence of fragility fractures in otherwise healthy individuals, my hope is that their use be limited or avoided.
21
Only a few mention osteopenia, which I don't think was actually considered a disease until Big Pharma made it so. For someone with documented osteoporosis, particularly with evidence of vertebral fracture, the benefit/risk of the bisphosphonates may be acceptable. However, the benefit/risk for those with "osteopenia" is much less clear, and may in fact be unacceptable. As I stood by my mother as her femur snapped mid-shaft, while she was opening her mailbox, I can tell you that this is an extremely serious adverse effect that can and does destroy the quality of one's remaining life. Was the diagnosis and treatment of osteopenia with bisphosphonates created to increase sales? I, for one, would really like to know.
15
Frankly the article is not very convincing the the drugs we should take rather then fear work so well. Especially after readings the comments you don't really feel that the author is on the right side?
9
"You do have to stick with the science", the doctor says, by which she really means only the statistics, because apparently the science isn't good enough to know why these strange (rotting jaws!) side effects occur, which implies science really doesn't have an adequate understanding of the drug itself.
14
After reading the recent article on the HSP-Write project this paragraph stuck out:
"The cost of sequencing DNA has fallen dramatically, so that it is now possible to sequence a person’s complete DNA for about $1,000. As a result, DNA sequencing is now routinely used for medical diagnoses, crop breeding and scientific research."
It seems obvious there should be an effort to sequence the genomes of those already effected by this awful side effect to look for genetic predispositions so as to screen out future patients with these mutations from taking these otherwise beneficial drugs. If/Once found, screening for specific mutations is even less costly than genome sequencing. I'd be surprised if such an effort were not already underway. Has the author of this piece investigated this?
"The cost of sequencing DNA has fallen dramatically, so that it is now possible to sequence a person’s complete DNA for about $1,000. As a result, DNA sequencing is now routinely used for medical diagnoses, crop breeding and scientific research."
It seems obvious there should be an effort to sequence the genomes of those already effected by this awful side effect to look for genetic predispositions so as to screen out future patients with these mutations from taking these otherwise beneficial drugs. If/Once found, screening for specific mutations is even less costly than genome sequencing. I'd be surprised if such an effort were not already underway. Has the author of this piece investigated this?
10
There is such an effort underway, but nothing clinically useful has been discovered yet for this class of drugs. Other drugs, such as carbamazepine, do have genetic makers for their side effects. Maybe in the future we will find markers for these drugs as well.
You can go to the PharmGKB website to search for what is already known about specific pharmacogenomics.
You can go to the PharmGKB website to search for what is already known about specific pharmacogenomics.
1
Obviously people are very suspicious of medications. Big Pharma lobbies massively, sends drug pushers to our doctors offices, and advertises like madman on TV.
Adverse effects are not required to be reported, and in fact doctors only report about 1 percent of them to the F.D.A. So who knows how many horrible things happen, or for that matter don't happen.
People dont need to be scientists to be suspicious and untrusting: all they need is to be aware of the corrupting influence of money.
Read Deadly Medicines by Peter Gotzsche, winner of BMAs first prize book.
Adverse effects are not required to be reported, and in fact doctors only report about 1 percent of them to the F.D.A. So who knows how many horrible things happen, or for that matter don't happen.
People dont need to be scientists to be suspicious and untrusting: all they need is to be aware of the corrupting influence of money.
Read Deadly Medicines by Peter Gotzsche, winner of BMAs first prize book.
18
We seem to have forgotten the basics. Foods build health. Nourishing our bodies is the key to health. Drugs do not build health. In fact, in order to be classified as a drug, it must be fatal at a high enough dosage.
Foods and herbs have advantages over drugs. Namely, they are bi-directional. They adjust to the body's current state. Drugs are uni-directional, meaning they act in only one direction, regardless of the body state. Which is why they are dangerous!
Healthy bones are flexible with good mass. Calcium and magnesium build bones. White sources like dairy and especially yogurt. And herbs like Stinging Nettle Leaf infusion.
Green Blessings!
Foods and herbs have advantages over drugs. Namely, they are bi-directional. They adjust to the body's current state. Drugs are uni-directional, meaning they act in only one direction, regardless of the body state. Which is why they are dangerous!
Healthy bones are flexible with good mass. Calcium and magnesium build bones. White sources like dairy and especially yogurt. And herbs like Stinging Nettle Leaf infusion.
Green Blessings!
11
I'm amazed that this even has to be said:
All the good eating and leaf infusions in the world cannot prevent or cure countless very real and very serious diseases.
That's why we need medical science, and not just "green blessings."
All the good eating and leaf infusions in the world cannot prevent or cure countless very real and very serious diseases.
That's why we need medical science, and not just "green blessings."
10
I wholeheartedly agree! The lack of basic nutrition courses in medical schools leaves doctors without the most powerful tools! Foods! Doh! And why do you suppose we don't learn that in medical school? Hmmm, maybe because it's not as profitable to recommend foods as it is to write a prescription, after an expensive bone density scan.
Until we are able to separate our healing enterprises from the pressures of greed for profits, we will continue to suffer the consequences.
Simple and inexpensive herbal infusions provide bone-building minerals, particularly Stinging Nettle Leaf. Urtica Dioica is the botanical name. Use 1 oz per quart of boiling water. Steep for 4 hours, strain and refrigerate. 400mg of calcium per cup. Along with a generous helping of other minerals, and protein for energy. My teacher Susun S. Weed has more free info. Green Blessings!
Until we are able to separate our healing enterprises from the pressures of greed for profits, we will continue to suffer the consequences.
Simple and inexpensive herbal infusions provide bone-building minerals, particularly Stinging Nettle Leaf. Urtica Dioica is the botanical name. Use 1 oz per quart of boiling water. Steep for 4 hours, strain and refrigerate. 400mg of calcium per cup. Along with a generous helping of other minerals, and protein for energy. My teacher Susun S. Weed has more free info. Green Blessings!
6
Let's dispense with the pseudo-science. Where's your double blind study of this concoction?
11
Read the book. "How We Do Harm" by Otis Brawley chief medical officer of the American Cancer Society.
7
Based on the comments, it is obvious that our justified hatred of big Pharma has transformed into a generalized skepticism regarding science. This is unfortunate.
13
Based on the comments, consumers are realizing there is good reason for them to do their own investigation into the drugs and their life threatening side effects that their doctors are unwittingly prescribing thanks to huge incentives pharma reps are mandated to give them. And if they are not being incentivized, these docs, they are not doing their own investigations. Skepticism and investigation are part of science. The fact is that these are not 'Rare Side Effects' for the average user tells us something about the true source of the article.
10
My doctor advised me to take fosamax despite the fact that my bone scan was normal (albeit on the low side of normal). I refused. Doctors must have some incentive to prescribe this drug otherwise why are they so pushy? Doctors hate it when patients don't acquiesce to their 'advice.'
21
Being one of those few who cannot tolerate statins because of the rare rhabdomyolysis problem, I have to say that an irrational fear is not really in play here. True, from a scientific point of view, "anecdotal" evidence is not useful, but when you yourself are the anecdote, the fact that all those others have a fine time with the drug doesn't really count for much. It has taken me almost two years to recover my muscle mass, and during the recovery I was in constant debilitating pain that interfered with work (concentration, stamina and ability to travel). The weakness also caused a torn ligament. I was lucky that I started out very muscular, and was only in my fifties when this happened. Otherwise, I might not have recovered.
Bottom line: Develop testing to assure that the drugs prescribed will not cause the disastrous effect and test everyone before prescribing. If this seems expensive, my recovery has also been expensive--in the thousands on my high-deductible medical plan, paid with real money out of my salary. Since these aspects of medical practice are economically driven (whether or not to prescribe a drug that has disastrous side effects), those few of us who suffer the problematic side effects need to bring class action suits to cover their "negligible" costs, thus bringing a little more of our reality into the economic equation.
Bottom line: Develop testing to assure that the drugs prescribed will not cause the disastrous effect and test everyone before prescribing. If this seems expensive, my recovery has also been expensive--in the thousands on my high-deductible medical plan, paid with real money out of my salary. Since these aspects of medical practice are economically driven (whether or not to prescribe a drug that has disastrous side effects), those few of us who suffer the problematic side effects need to bring class action suits to cover their "negligible" costs, thus bringing a little more of our reality into the economic equation.
25
"anecdotal" means it happened to a real person
4
Having a rare reaction to one medication doesn't mean you'll also have one to another medication.
1
Those images appear to be sections, not CT scans, so they can't be from a single patient at different ages. Fact check, anyone?
7
You know the fact is these drugs may reduce vertebral fractures by about 20 % according to drug company studies. A very good review here http://www.ti.ubc.ca/2012/01/24/a-systematic-review-of-the-efficacy-of-%... concluded "
There are no proven clinically meaningful benefits for bisphosphonates in postmenopausal women without a prior fracture or vertebral compression.
Because of the small magnitude of effect and the high risk of bias in the RCTs, it is unclear whether bisphosphonates cause a clinically meaningful reduction of hip fractures in women with a prior fracture or vertebral compression.
For any new class of drugs indicated to prevent bone fractures, it is essential that a clinically meaningful reduction in hip fractures be demonstrated before licensing.'"
There are no proven clinically meaningful benefits for bisphosphonates in postmenopausal women without a prior fracture or vertebral compression.
Because of the small magnitude of effect and the high risk of bias in the RCTs, it is unclear whether bisphosphonates cause a clinically meaningful reduction of hip fractures in women with a prior fracture or vertebral compression.
For any new class of drugs indicated to prevent bone fractures, it is essential that a clinically meaningful reduction in hip fractures be demonstrated before licensing.'"
16
I was diagnosed with osteoporosis in late 2010 at age 58. My physician (trained as an endocrinologist) prescribed testosterone gel in February of 2011. Instead of calcium, I've also been taking strontium citrate since April of 2011. Strontium renalate is used as a treatment for osteoporosis in much of the rest of the world, but it has not been approved by the FDA for use in the United Sates. Strontium citrate is the only similar supplement that we have here. Both my dentist and my orthopedist were glad to hear that I was not taking any of the bisphosphonates. They felt that the risk was too great.
My most recent DXA scan (bone density test) showed that my left hip has improved by 6.7% (from -1.5 to -1.1) and my spine has improved by 21.1% (from -3.6 to -2.3). I've yet to have a fracture, and I run or walk at least a few miles every day.
My most recent DXA scan (bone density test) showed that my left hip has improved by 6.7% (from -1.5 to -1.1) and my spine has improved by 21.1% (from -3.6 to -2.3). I've yet to have a fracture, and I run or walk at least a few miles every day.
22
There's nothing like personal experience to motivate someone to become very knowledgeable about some problem.I am a physician and also one of the earliest people (in 2001) to sustain an atypical femur fracture (AFF), while just standing on a moving NY subway train. I felt my femur cracking as I stood still. I had pain in my thigh for many weeks before that, which was actually an undiagnosed stress fracture that often precedes an actual break. I had taken alendronate (Fosamax) for about 6 years to prevent (not to treat) osteoporosis.
Published research shows that the likelihood of such a femur fracture happening to people who’ve taken Fosamax, Actonel, Boniva, Reclast or other bisphosphonate for at least 5 years is about 1 in 500, so it is not rare!!! This is not the same as a hip fracture; it is a break lower down, in the shaft of the femur. I now have an email support group for men and women who’ve had these fractures. Many had thigh pain for weeks or more before the fracture. There are now about 220 members of my group, and I wrote an article in a medical journal in 2012 analyzing 81 of them. About 40% fractured BOTH femurs and about 40% had delayed healing, often requiring a second operation. 35% also fractured a bone in their foot (metatarsal). So It’s a big deal!
If you have had an atypical femur fracture, you can write me at [email protected]. The group provides a lot of emotional support to its members as well as answers to their questions.
Published research shows that the likelihood of such a femur fracture happening to people who’ve taken Fosamax, Actonel, Boniva, Reclast or other bisphosphonate for at least 5 years is about 1 in 500, so it is not rare!!! This is not the same as a hip fracture; it is a break lower down, in the shaft of the femur. I now have an email support group for men and women who’ve had these fractures. Many had thigh pain for weeks or more before the fracture. There are now about 220 members of my group, and I wrote an article in a medical journal in 2012 analyzing 81 of them. About 40% fractured BOTH femurs and about 40% had delayed healing, often requiring a second operation. 35% also fractured a bone in their foot (metatarsal). So It’s a big deal!
If you have had an atypical femur fracture, you can write me at [email protected]. The group provides a lot of emotional support to its members as well as answers to their questions.
41
I knew it was a big pharma scam from day one. Just like the estrogen boondoggle. Statins are next. You should know better.
Check out what SSRIs do to the brain. All this and more documenting the horrors of the medical industrial complex.
Check out what SSRIs do to the brain. All this and more documenting the horrors of the medical industrial complex.
10
What on earth is emotional support? A lawyer?
1
This article and the industry in general ignore or do not pursue research and treatment with supplements. When my body rejected the medication I researched appropriate supplements and tracked my success with regular bone scans. Twenty years later no broken bones.
6
Many would appreciate learning the specifics of your personal research and recovery. This is such a huge issue and is only truly being addressed by individuals. You are fortunate that your body rejected the drug before it destroyed your bones.
7
Yes, please let us know what supplements you take.
Thanks.
Thanks.
1
What did you do
Btw love Laguna
Btw love Laguna
1
Recently I had read a excellent book by two noted Physicians, with input from many more physicians, titled." Ending Medical Reversals". The main thrust is explaining how many practices and procedures are reversed, as either out right wrong or not effective. The solution touted, is evidence based medical practice based on controlled trials, typically not trials by drug manufactures. We take a lot of drugs approved by the FDA, from data submitted by the Manufactures. Notice when one takes a so called blockbuster drug, the side effects listed are usually all the same, written by Lawyers. Such a long list, people tend to take the notations with a grain of salt. Seniors usually have problems with too many, or powerful drugs. Doctors are caught in the middle as they practice what they learned in Med School. Or what the treatment of today is in vogue.
5
I quit these drugs in 2001-2, not because of fear, but because for hours after taking any one of them, I had a "pins and needles" reaction. It usually happened in the middle of the night and I spent hours walking in circles in my bedroom, trying to get some relief. Then, off to work!
Are you sure it's all because of "irrational fear" and not a quality of life issue?
Are you sure it's all because of "irrational fear" and not a quality of life issue?
16
Why no mention of very low dose estrogen and its bone benefits?
14
Like you, I think that it is time to re-examine the benefits of low-dose estrogen.
If low-dose HRT is started AT menopause, rather than years later (as was fairly common in the past), there is growing evidence that the negatives associated with HRT in the studies reported earlier do not occur at significant enough rates to outweigh the benefits of low-dose estrogen maintenance.
One of the most important of these benefits, of course, is bone density preservation.
After careful research, low-dose estrogen replacement (delivered by skin patch – – bypassing the liver) is the choice I have made for myself.
If low-dose HRT is started AT menopause, rather than years later (as was fairly common in the past), there is growing evidence that the negatives associated with HRT in the studies reported earlier do not occur at significant enough rates to outweigh the benefits of low-dose estrogen maintenance.
One of the most important of these benefits, of course, is bone density preservation.
After careful research, low-dose estrogen replacement (delivered by skin patch – – bypassing the liver) is the choice I have made for myself.
10
I was menopaused at age 35 and took HRT ever since. Now 66 I have osteoperosis and my bones hurt.
2
I've received so much conflicting information from doctors, dentists and oral surgeons that I ended up failing to treat a very serious osteoporosis condition.
I failed to take Hormone Replacement Therapy (HRT) to prevent bone loss when research began decrying HRT at around the same time I experienced menopause in my early 40s. Big mistake.
I failed to take Fosamax after reading the New York Times report in 2008 on Cornell Weil's study of the incidence of femur fractures associated with this drug, since it coincided with what had happened to my mom just a year earlier (she'd been on it for more than 10 years). But again, this was a big mistake on my part.
Now, 8 years later, despite taking Vitamin D, eating calcium rich foods and having physical therapy, I've experienced a 35% loss of bone in my upper spine and I have been diagnosed with compression fractures resulting in terrible upper back pain, difficulty in being able to stand for more than a few minutes and worst of all, difficulty breathing.
These issues are preventing me from living a normal life. I no longer walk up or down a flight of stairs with ease, pick something heavy off a supermarket shelf without feeling the strain, or even simply sit in my home and watch TV or read a book without occasional gasps for breath.
I'm now in my late 50s and terrified at what the future holds for me. I fear I will have a very unpleasant passage into old age. Indeed, I fear my body has reluctantly already accepted its fate.
I failed to take Hormone Replacement Therapy (HRT) to prevent bone loss when research began decrying HRT at around the same time I experienced menopause in my early 40s. Big mistake.
I failed to take Fosamax after reading the New York Times report in 2008 on Cornell Weil's study of the incidence of femur fractures associated with this drug, since it coincided with what had happened to my mom just a year earlier (she'd been on it for more than 10 years). But again, this was a big mistake on my part.
Now, 8 years later, despite taking Vitamin D, eating calcium rich foods and having physical therapy, I've experienced a 35% loss of bone in my upper spine and I have been diagnosed with compression fractures resulting in terrible upper back pain, difficulty in being able to stand for more than a few minutes and worst of all, difficulty breathing.
These issues are preventing me from living a normal life. I no longer walk up or down a flight of stairs with ease, pick something heavy off a supermarket shelf without feeling the strain, or even simply sit in my home and watch TV or read a book without occasional gasps for breath.
I'm now in my late 50s and terrified at what the future holds for me. I fear I will have a very unpleasant passage into old age. Indeed, I fear my body has reluctantly already accepted its fate.
25
Thank you for sharing your story. Reading through the comments, I see that not many have shared personal accounts of the effects of bone demineralization.
14
Funny thing is they gloss over the fact that these drugs affect your immune system. Something I consider important. While they say these problems are rare how come there are hundreds and hundreds of people complaining about the effect of these meds. Heck even my dentist said don't take the meds.
12
The question is, why would these drugs cause the very event that they are prescribed to prevent - fracture? I don't discount science, but I am unwilling to take Fosamax to prevent hip fracture when I know the drug can cause femur fracture. How is the femur fracture less debilitating than a hip fracture? If the purpose is to prevent fracture but a "side effect" is fracture, there is something wrong with the theory, or at least not properly understood. Instead of blaming patients for being concerned and cautious, the medical profession should figure out why the "side effect" occurs. It's an effect of the drug, and indicates bone is not being properly preserved. The ostoenecrosis of the jaw is another proven, bizarre effect of the drug, and more reason to understand what is going wrong, rather than sweeping the unwanted effects under the medical rug ( or prescription pad).
20
There were 7,180 patients in the Amgen clinical trial referenced in the article, with half getting a placebo. So 3,590 got the Amgen osteoporosis drug. The article notes that in the trial there was “a sudden shattering of a thigh bone in one patient and an area of jawbone that inexplicably rotted in two.”
Therefore, in the trial, 2 in 3,590 or 1 in 1,785 of the patients taking the drug suffered a severe jawbone problem. This is far higher than the “one in 100,000" number given in the article for jawbone problems caused by osteoporosis drugs.
Therefore, in the trial, 2 in 3,590 or 1 in 1,785 of the patients taking the drug suffered a severe jawbone problem. This is far higher than the “one in 100,000" number given in the article for jawbone problems caused by osteoporosis drugs.
24
I have "ridden this train". My Dr prescribed Fosomax which I took and was monitored regularly. I believe once a week for 2 years.
No improvement. Next he prescribed Forteo which which I injected as prescribed for the limited course which is one course only in a lifetime. A top endocrinologist confirmed that I had some small improvement. I am now on a drug called Prolia. Once every six months I believe.
I was concerned about side effects. The 3 Drs involved had not seen or heard from colleagues of their patients experiencing any. It's hard to know what to do sometimes.
No improvement. Next he prescribed Forteo which which I injected as prescribed for the limited course which is one course only in a lifetime. A top endocrinologist confirmed that I had some small improvement. I am now on a drug called Prolia. Once every six months I believe.
I was concerned about side effects. The 3 Drs involved had not seen or heard from colleagues of their patients experiencing any. It's hard to know what to do sometimes.
12
I am surprised that the article doesn't mention any of the common side effects of these drugs, noted in the package inserts. Its implication that everyone who refuses or stops taking them is only afraid of the "rare" severe complications represents a reporting failure. I was diagnosed with osteoporosis after breaking my wrist in a fall on pavement. My doctor prescribed Fosamax, which I dutifully took as directed. Within a month or two, I had so much pain in my hips and legs that walking was difficult. My doctor then switched me to Actonel, which was initially better but eventually resulted in similar pain. I decided that I would take better care of my bones and general health by remaining active than by taking either of these medications.
15
There is something about the risk of having one's jaw rot that is particularly awful. Some risks are just scarier than others, I guess. I feel for these people who have to make this decision.
16
Two common psychological phenomena, the availability bias (Tversky & Kahneman, 1974) and the omission bias (Spranca, Minsk & Baron 1991), account for this result. With the availability bias, people overestimate the probability of an outcome if they can easily recall a vivid example to mind. With the omission bias, people find it worse if an action they took caused a bad outcome ("sin of commission") than if they did nothing and experienced a bad outcome anyway ("sin of omission"). A hip fracture may seem more "natural," as part of the aging process, as opposed to a bout of "unnatural" osteonecrosis. Daniel Kahneman won a Nobel prize for his work in showing that these types of cognitive processes are common and influential in everyday decision-making, including medical decisions.
7
The availability bias.
The omission bias.
Thank you so much for this. I have been using lots and lots of words to describe these two phenomena for many years, based only on my own unschooled common sense. It turns out that these phenomena have been identified by social scientists and have handy handles!
The omission bias.
Thank you so much for this. I have been using lots and lots of words to describe these two phenomena for many years, based only on my own unschooled common sense. It turns out that these phenomena have been identified by social scientists and have handy handles!
4
I was diagnosed with osteoporosis at age 20. I am now 38. I took alendronate for some time, but have stopped, despite my doctor's urgings. I had one tooth shatter, can't prove it was related to the Alendronate but it seems likely. More than that, what scares me is what seems to be a total lack of the long-term effect of these drugs. Because the majority of people do not develop osteoporosis until their 60s or later, it seems that no one has researched the effects of taking the drugs for a full lifetime and I worry that my doctors are prescribing drugs for me based on science tested on an entirely different population . All the animal studies I have looked at--and I am no scientist--seem to start to see abnormal fractures and cancers after 5-10 years. So if I were 80, I would take my chances, but at 38, I'm preferring to wait and hope that scientists will develop something better before it is too late for me. (I wonder if I am indeed the only person who has osteoporosis so young. I almost certainly have this condition due to eating disorders, and I know I am not the only person who suffered from anorexia from a young age).
15
Search within the NYT Opinionator feature for an essay entitled "Fractured: a first date."
It tells the story of an eating-disordered young woman whose arm bone unexpectedly shatters when she engages in a jokey arm wrestling match at a bar.
It tells the story of an eating-disordered young woman whose arm bone unexpectedly shatters when she engages in a jokey arm wrestling match at a bar.
5
Your tooth likely shattered due to the same loss of calcium that resulted in your osteoporosis. Not from the medication.
So many experts weigh in on the topic. Still so much misinformation. Osteoporosis is not the result of a drug deficiency. When I ask post-menopausal women what does cause osteoporosis they reply: lack of calcium. But I ask, did you all stop consuming calcium in unison as you reached menopause? Obviously, no. Osteoporosis is induced by a lack of estrogen, which sends a signal to hold calcium in bone. Consumption of more calcium is like dumping calcium into a barrel with a hole in the bottom. It will just pass through and calcify arteries. Short of estrogen replacement which many women needlessly fear, phyto (plant) estrogens like those found in flaxseed (lignan's) and grapes (resveratrol) may suffice. Magnesium, vitamin C, vitamin D, zinc, omega-3 oils are other beneficial nutrients for bone.
12
The women are right when they reply that lack of calcium is an important cause of osteoporosis.
What they do not realize is that optimal amounts of calcium must be consumed, along with vitamin D, DURING THE CRITICAL WINDOW from birth through age 18 in order to build bone mineral density for a lifetime. After that time, as you point out, the benefits of calcium are limited (except during pregnancy, when the developing fetus will parasitize the mother's bones unless adequate levels of circulating calcium are available).
The trend toward letting kids opt out of milk-drinking in favor of soda and juice is a very unfortunate one. My youngest child, a 16-year-old girl, has many friends who have not had a glass of milk for years. She has asked some of them whether they take calcium plus D supplements (as she does, in addition to drinking milk at every meal), and they have all replied in the negative.
I also agree with you that estrogen replacement therapy (at a low dose, through a patch, and starting immediately at menopause) is a very reasonable option for many women who wish to preserve bone density.
What they do not realize is that optimal amounts of calcium must be consumed, along with vitamin D, DURING THE CRITICAL WINDOW from birth through age 18 in order to build bone mineral density for a lifetime. After that time, as you point out, the benefits of calcium are limited (except during pregnancy, when the developing fetus will parasitize the mother's bones unless adequate levels of circulating calcium are available).
The trend toward letting kids opt out of milk-drinking in favor of soda and juice is a very unfortunate one. My youngest child, a 16-year-old girl, has many friends who have not had a glass of milk for years. She has asked some of them whether they take calcium plus D supplements (as she does, in addition to drinking milk at every meal), and they have all replied in the negative.
I also agree with you that estrogen replacement therapy (at a low dose, through a patch, and starting immediately at menopause) is a very reasonable option for many women who wish to preserve bone density.
6
After research and consulting four doctors I was told Prolia had "Little to no side effects". I had difficulty with previous bisphosphonates and was concerned about a six month injection. The problem was when side effects began two weeks after injection, no one, no doctors, call in "nurse", pharmacy could help. My doctor actually told me, "Oh, the Amgen rep was here two days ago, you should speak with him." Rare side effects? My cousin had a femor and hip fracture, my Aunt dental problems and my lingering serious side effects. Note to "Science is the way to go people: I was stunned to find out how few people were in the test group. When calling the drug company for help, I got conflicting information. Called and wrote FDA. One year later the exact side effect I was hoping to avoid was than uploaded as a side effect on the warning label. Where is the FDA?
9
The rates of serious side effects of taking this drug are comparable to those of women who suffer aura migraine having a stroke when taking the combined pill (which is 28 of every 100,000 women who both suffer aura migraines and take the pill). Yet in New Zealand at least, doctors are loathed to prescribe the combined pill to women who have suffered even a single aura because of this risk. Everybody should be aware of the risks involved with taking prescription medicine - they should be able to consent to preventative medicine, understanding the risks relatively - but it strikes me that that is not what happens.
3
"... bemoaning patients’ abandonment of traditional osteoporosis drugs" 'Bemoaning? Is this a serious news piece or a histrionic article written to influence by emotion. It's a serious subject and should be written as such.
As to whether patients are making informed or emotional decisions; perhaps the medical and pharmacy communities should look at the ill-fated results of other prescriptions that had poor patient outcomes. Patients may be questioning medical professionals based on their fears in our brave, new world where not all medical "advances" are not necessarily good for all patients.
As to whether patients are making informed or emotional decisions; perhaps the medical and pharmacy communities should look at the ill-fated results of other prescriptions that had poor patient outcomes. Patients may be questioning medical professionals based on their fears in our brave, new world where not all medical "advances" are not necessarily good for all patients.
6
This is us all very useful since my doctor said that I need to come in and discuss my bone density result. OY
4
I take issue with the false dichotomy between "irrational fears" and "actual research." Risk assessment requires that we attend not only to the frequency of side effects, but also about to their criticality and reversibility. The frequency of critical side effects from bisphosphonates is low (4 in 1000), but their criticality is high (osteonecrosis, kidney failure, chronic pain) and, in the case of the annual infusions, irreversible -- the drug is in your system for a year. Moreover, there is no research to date that predicts who will be in the dreaded .4% and who will not.
I have osteoporosis, cannot tolerate oral bisphosphanates, and saw my bone density worsen even with nutritional supports, weight bearing exercise, etc. I made an informed decision to undergo a two-year course of daily injections with a medicine that carries its own black box warning, based on balancing the incidence (low), criticality (high) and reversibility (high -- the agent is short-acting) of the risk. I have reversed 13 years of bone loss, a robust enough improvement that my endocrinologist (who has never had an infusion patient suffer bad side effects) is fine with my waiting until my next bone density study two years hence before considering follow-up infusions...unless I have a fracture before then. This is an informed treatment plan that my physician and I made together. I wish your reporters and your readers the same access to this kind of thoughtful, team-based approach to care.
I have osteoporosis, cannot tolerate oral bisphosphanates, and saw my bone density worsen even with nutritional supports, weight bearing exercise, etc. I made an informed decision to undergo a two-year course of daily injections with a medicine that carries its own black box warning, based on balancing the incidence (low), criticality (high) and reversibility (high -- the agent is short-acting) of the risk. I have reversed 13 years of bone loss, a robust enough improvement that my endocrinologist (who has never had an infusion patient suffer bad side effects) is fine with my waiting until my next bone density study two years hence before considering follow-up infusions...unless I have a fracture before then. This is an informed treatment plan that my physician and I made together. I wish your reporters and your readers the same access to this kind of thoughtful, team-based approach to care.
15
For years, I have been warning patients, friends and family members about the adverse effects of osteoporosis drugs. Finally, the FDA issued a news release (Oct 13, 2010) warning of “possible” risk of femur fractures caused by the osteoporosis drugs such as bisphosphonates, fosamax, boniva, and actonel, etc. They also added a new warning label which was recommended by a Task Force which found that almost all women suffering from atypical fractures of the mid femur were on these drugs. This same ASBMR task force previously reported (2007) these same drugs cause osteonecrosis of the jaw. When a drug adverse effect is identical to the underlying disease the drug is supposed to treat, we have the perfect storm. Osteoporosis drugs are marketed and sold as fracture preventive, and are not supposed to cause fractures. Yet they do. This is a very bad thing, and indicates a very profound problem with these bisphosphonate drugs. for more see:
http://jeffreydachmd.com/2015/03/fda-says-osteoporosis-drugs-cause-femur...
jeffrey dach md
http://jeffreydachmd.com/2015/03/fda-says-osteoporosis-drugs-cause-femur...
jeffrey dach md
13
Doctors are in cahoots with the pharmaceutical companies. People seem to agree with this but only on an intellectual level. When it comes to reality and the doctor prescribes meds, they take it like sheep.
Osteoporosis is a Western disorder. Stop eating meat, hold the coffee which leeches calcium from the body, hold the sugar, lift weights, walk a lot, and forget about the meds.
Osteoporosis is a Western disorder. Stop eating meat, hold the coffee which leeches calcium from the body, hold the sugar, lift weights, walk a lot, and forget about the meds.
6
"Osteoporosis is a western disorder."
This is absolutely, indisputably untrue.
Rates of osteopenia and osteoporosis are actually HIGHER in Asia and in the Middle East than they are in North America and Europe. There is NO region in the world in which post menopausal women and elderly men do not suffer significant rates of osteoporosis.
This is fact, not opinion.
This is absolutely, indisputably untrue.
Rates of osteopenia and osteoporosis are actually HIGHER in Asia and in the Middle East than they are in North America and Europe. There is NO region in the world in which post menopausal women and elderly men do not suffer significant rates of osteoporosis.
This is fact, not opinion.
10
I have to take some offense to your glib advice. For many of us reading this article who are middle aged and already in the throes of this awful and debilitating disease, rest assured that if it were only that easy, we wouldn't be discussing this article or have the need for any medication to help us in avoiding further deterioration of our skeletal structure. Osteoporosis is very real. It effects both men and women, those of smaller frame who are Caucasian or Asian are more likely to have it, and it does gave a genetic component. Diet and exercise alone don't generally help enough to overcome further degeneration.
13
My mother was told her bones are "paper thin" and given the prescription for a $1000 shot. After hearing from others about it, I went online and read the jaw and fracture horror stories. She made the decision not to get the shot.
Here is the kicker. She would not have such serious osteoporosis if she had not been given Prilosec for years!
I'm sure we all have stories like these: I will save the "Big Cancer Industry" criticism for a related article.
But the bottom line is: How can you trust your doctors, the medical industry, and drug companies who can put you at risk and ruin your life?
Here is the kicker. She would not have such serious osteoporosis if she had not been given Prilosec for years!
I'm sure we all have stories like these: I will save the "Big Cancer Industry" criticism for a related article.
But the bottom line is: How can you trust your doctors, the medical industry, and drug companies who can put you at risk and ruin your life?
4
Yes, Prilosec is another contributing factor in bone loss. I'm glad you brought this up. I've lost lower jawbone & teeth. After having implants & waiting to have the denture made, having to wait 3 - 4 months for healing, I FINALLY went online to see what other meds, might be "dissolving" my bones, & sure enough, Prilosec came up.
This question is not asked in the dental office, when they do ask about Fosomax (the the like) use. I have to inform them & hope they'll investigate this themselves.
This question is not asked in the dental office, when they do ask about Fosomax (the the like) use. I have to inform them & hope they'll investigate this themselves.
3
When is it news. When is it an ad for Pharma. I can't tell anymore.
9
What’s with the scary photos? Was this “patient” taking these drugs or not? Maybe the patient was doing something else that can cause osteoporosis, like taking steroids.
1
I wondered the same thing about those scans. It turns out that they reflect a progression that is not rare for a female patient in the first eight years after menopause. Worse than average, but not rare.
(My source of information: My longtime BFF, who is a bone radiologist at a major teaching hospital.)
(My source of information: My longtime BFF, who is a bone radiologist at a major teaching hospital.)
6
What do they expect from us? the pharma companies own us, clinical trials over the last 20 years have become shams, and it seems that every new drug that comes on the market is taken off eventually because of dangerous side effects that were covered up.
And then there are the surgical device companies.
Or the fact that medical error is the 3rd leading cause of death in the US. This isn't necessarily doctor error. It includes people who take Rx's as prescribed, and die from them.
Then, there's the reality that doctors routinely forget about women when it comes to cardiac health, and generally underplay our health issues.
I think most doctors mean well and want the best for their patienst. But far too many of them are not fully informed about drug interactions.
A close friend of mine, who works in pharma regulatory affairs, shook his head at these drugs. He didn't say not to take them, but he did describe the risks and that scared me. I trust him more than I trust your run-of-the-mill MD. (I think I have exceptioional doctors, but not everyone does.) He's not pressured at his company, but he says most regulators are fiercely pressured by their employers to submit favorable reports. Thank goodness there are people like him working in regulatory affairs ... but I fear there aren't enough of them, and much of this is now being done overseas.
Perhaps when the pharma companies stop manipulating us, we might be more open-minded. As it is, you'd be a fool to trust them.
And then there are the surgical device companies.
Or the fact that medical error is the 3rd leading cause of death in the US. This isn't necessarily doctor error. It includes people who take Rx's as prescribed, and die from them.
Then, there's the reality that doctors routinely forget about women when it comes to cardiac health, and generally underplay our health issues.
I think most doctors mean well and want the best for their patienst. But far too many of them are not fully informed about drug interactions.
A close friend of mine, who works in pharma regulatory affairs, shook his head at these drugs. He didn't say not to take them, but he did describe the risks and that scared me. I trust him more than I trust your run-of-the-mill MD. (I think I have exceptioional doctors, but not everyone does.) He's not pressured at his company, but he says most regulators are fiercely pressured by their employers to submit favorable reports. Thank goodness there are people like him working in regulatory affairs ... but I fear there aren't enough of them, and much of this is now being done overseas.
Perhaps when the pharma companies stop manipulating us, we might be more open-minded. As it is, you'd be a fool to trust them.
5
At our clinic staffed by doctors trained in nutrition, we routinely improve DEXA scans about the same as biphosphonates, but without the side effects.
MCHA calcium (whole bone matrix), D3, K2 and various other nutrients will do it.
The article fails to mention that slowing removal of old bone via the osteoclasts, over a few years leads to bone becoming more brittle. So those drugs have a time frame where they work, then become counterproductive
Those users of biphophonates who develop acid reflux, and many do, are then prescribed proton pump inhibitors, which lower stomach acid, and the side effect of that is reduced absorption of minerals leading to osteoporosis,
Thinks about that.
MCHA calcium (whole bone matrix), D3, K2 and various other nutrients will do it.
The article fails to mention that slowing removal of old bone via the osteoclasts, over a few years leads to bone becoming more brittle. So those drugs have a time frame where they work, then become counterproductive
Those users of biphophonates who develop acid reflux, and many do, are then prescribed proton pump inhibitors, which lower stomach acid, and the side effect of that is reduced absorption of minerals leading to osteoporosis,
Thinks about that.
12
Thanks for sharing this advice. Much appreciated.
4
I'm surprised no one has mentioned studies shown in the China Study regarding diet and osteoporosis. I went through premature menopause when I was 34, took estrogen briefly, but quit because of side effects. When I was in my early 50s I was diagnosis with osteoporosis and prescribed fosomex. I stopped after a few months because of digestive problems it caused (this is a form of an industrial chemical ). My dexa scan was -3.0, not too bad. Then I read a book by Dr. Amy Lanou, " Building Bone Vitality". I started following a vegan diet, and have given up all dairy and animal products. The last time I had my bone density checked was in a research study at Pennington BioMedical Center in Baton Rouge, LA (one of the centers that helped develop the Dash Diet). My bone density was tested on 4 different machines that measured body composition and bone density, and the results showed that my bone density was now a +1.76. I am 74, am physically active, small boned, and have no problems with fractures. I'm convinced giving up dairy products made the difference. We have been brainwashed by the powerful dairy industry that cows milk is essential for good health. Not true!
12
Do you have any idea how many thousands of well trained scientists have studied osteoporosis? Do you have any idea how many carefully controlled studies have been run on osteoporosis? Do you think after all this work and studies it might be possible that the experts in the field know something about osteoporosis?
2
Dairy is literally poison and definitely associated with the very high rates of osteoporosis in North America.
Here's what The China Study data actually say about dairy:
https://rawfoodsos.com/2010/06/20/a-closer-look-at-the-china-study-dairy...
_Negative_ correlations between dairy consumption and most cancers. But dairy is relatively rare in the diets studied, only a couple of regions of China had high dairy consumption.
I agree that dairy is not essential, and many people have trouble digesting it. For those who can digest it, full-fat dairy is nutrient rich.
https://rawfoodsos.com/2010/06/20/a-closer-look-at-the-china-study-dairy...
_Negative_ correlations between dairy consumption and most cancers. But dairy is relatively rare in the diets studied, only a couple of regions of China had high dairy consumption.
I agree that dairy is not essential, and many people have trouble digesting it. For those who can digest it, full-fat dairy is nutrient rich.
My atypical femur fracture occurred in February 2010, after 5 years on Fosamax, prescribed as a "preventative" because my DEXA scan showed osteopenia, and my mother had recently suffered a broken hip. I was 67. At the time there were no warnings about fracture risks; they didn't start appearing until July of that year, but my research found numerous cases, raising suspicion that this was the cause since the fracture could not be attributed to or linked to anything else in my history. In addition to the emergency surgery and long rehabilitation, the experience was life-changing for my everyday existence and in the way I thought about drugs, doctors and pharmaceutical companies. Merck marketed the drug as a preventative purely for profit and put that ahead of long-term research data which would have exposed these risks before so many people unknowingly took the drug, in the belief that it would improve their bones. I worry every day that my other leg will break, but doctors give me blank stares when I ask for advice on what I can do that I am not already doing (exercise, diet, etc.) to strengthen my bones or repair the damage to my existing skeleton! For some, maybe the benefits outweigh the risks, but it will be hard to convince me that any drug is safe, given the fact that the drug companies themselves do not reveal these risks, even to doctors, before pushing their sale to the public.
23
HSS top research and hospital in the country in NYC told me decades ago that walking helps the hips. I wonder how many were couch potatoes in their teens or suburban moms. We need the girl scouts and more camping trips to build up teen muscle and bone. Sounds like all these drug manufacturers don't understand the human body and how it works or who it wont help.
3
Most patients do not comply with lifestyle advice.
4
Author Gina Kolata did not mention reputable (peer-reviewed) research that shows that there is no additional benefit to taking these drugs after five years. I took several different medications, beginning in my forties when they were first recommended to me by my physician. The side effects were mild--gastric distress--but neither did I see dramatic gains in density on bone density scans done over the years of treatment. After reading an abstract of research showing no additional benefits after five years of treatment, I stopped.
12
The National Osteoporosis Foundation and the National Bone Health Alliance are both heavily funded by "strategic partners" -- drug companies such as Amgen, Agnovos, Pfizer, Bayer HealthCare, and more. The website section covering this question at the American Society for Bone and Mineral Research is temporarily not functioning. Not to knock what they're saying, but I think it should be disclosed, just as the article excellently quotes doctors who are not financially related to drug companies that manufacture osteoporosis drugs. Further information on the companies can be obtained for a fee from Guidestar, which analyzes their IRS forms 990. Meanwhile, older women who still want to avoid these drugs might consider T'ai Chi, which studies have shown can considerably reduce the risk of falling, and of being injured if one does fall. (It doesn't directly affect bone density however, as far as I know.)
12
I took Fosamax for about a year for mild osteopenia. For the first time in my life, I had awful digestive problems. I told my doctor I wouldn't take it anymore. It took another year, and holistic interventions before the abdominal wall pain stopped. Since then, I have researched and found that improving diet, getting enough exercise, and and avoiding drugs that interfere with a basic metabolic pathway are the way to strengthen bones. The bisphosphonates interfere with the natural repair mechanism of our skeletons: it stops the breakdown of damaged bone by osteoclasts so that osteoblasts can do their job of repairing bones. Let's work with the beautiful system instead of meddling.
13
If doctors truly believe it is their duty to do no harm, why are they so stuck on
limited, old-paradigm treatments (drugs and surgery). If you haven't done it already, research functional medicine. It's exactly what the name implies - medicine that is designed to improve functioning, not simply suppress symptoms with drugs. For osteoporosis, think prevention. Calcium needs an acidic environment for absorption. Women, especially small women (future little old ladies) tend to have reduced stomach acid as they age. Add to that all the antacids people take for years and you've got a problem. Address the underlying cause of disease to treat it more effectively than by throwing some chemicals at it.
limited, old-paradigm treatments (drugs and surgery). If you haven't done it already, research functional medicine. It's exactly what the name implies - medicine that is designed to improve functioning, not simply suppress symptoms with drugs. For osteoporosis, think prevention. Calcium needs an acidic environment for absorption. Women, especially small women (future little old ladies) tend to have reduced stomach acid as they age. Add to that all the antacids people take for years and you've got a problem. Address the underlying cause of disease to treat it more effectively than by throwing some chemicals at it.
8
I am staying at home today as I have the past many years. I am afraid of snake bites and lightening strikes and who knows when a meteor will fall from the sky and strike me dead. Yes, meteor strikes happen and I am safe. As for osteoporosis treatment, that is a no brainner. Osteoporosis is common and the suffering is intense. We are indeed blessed with relatively complication free medications . Ask yourself what is the base rate for complications vs no complications. How many patients are treated , live happy productive lives and are saved from the ravages of this terrible but treatable disease. Of course the patient that suffers mandibular osteonecrosis is spotlighted in headlines just as a person struck by a meteor. Shall we all stay home?
9
After taking Fosamax for only 4 years, prescribed as prevention against osteoporosis, I suffered two femur fractures (both legs) at age 67. A week later, my sister, two years older, suffered a femur fracture after taking Fosamax for several years. Neither my mother, who died at age 83, nor my maternal grandmother, who lived to be 95, suffered any broken bones. A few months before my fractures, I had a bone density test that pronounced the risk of a femur fracture as "extremely low." The surgeon who operated on my legs said that my bones were very hard, but extremely brittle; it was like "drilling through glass." A group lawsuit, of which I was a part, was sandbagged by Merck. It should be noted that Merck was very active in promoting the distribution of bone scanning machines for detecting women suffering "osteopenia" who would be good candidates for Fosamax.
One thing my experience suggests is that there are genetic components to this issue: Who is at risk for osteoporosis based on family history? Who is a likely to experience the serious side effects of bisphosphonates? We need to know more.
One thing my experience suggests is that there are genetic components to this issue: Who is at risk for osteoporosis based on family history? Who is a likely to experience the serious side effects of bisphosphonates? We need to know more.
43
Barbara, Thank you so much for sharing this information, I have been fearful of taking Fosamax after my elderly mother suffered a femur fracture after having been on that drug for more than 10 years. There is certainly a genetic component to having osteoporosis and perhaps there is likewise a genetic component to experiencing a negative reaction to the drug. Sadly, I am suffering the effects of osteoporosis without taking any drugs other than trying to eat healthy and get physical therapy as often as possible. But it is a debilitating disease.
A lightbulb went off in my head when you wrote about Merck "pushing" bone scan machines on doctors. Back in 2008 when I was living in Los Angeles, I was surprised to discover that the internist I visited had one of these machines right at his rather small office. At that time, I was diagnosed with osteopenia and he immediately wrote me a prescription for Fosamax. But in going over my results, he conceded that my results were on par with other women in my age group. And since my mother had just recently experienced a spontaneous fracture of her femur bone, there was no way I would entertain taking this drug that Merck was pushing its doctors to prescribe. Now I understand why my doctor had this machine in his office to begin with!
A lightbulb went off in my head when you wrote about Merck "pushing" bone scan machines on doctors. Back in 2008 when I was living in Los Angeles, I was surprised to discover that the internist I visited had one of these machines right at his rather small office. At that time, I was diagnosed with osteopenia and he immediately wrote me a prescription for Fosamax. But in going over my results, he conceded that my results were on par with other women in my age group. And since my mother had just recently experienced a spontaneous fracture of her femur bone, there was no way I would entertain taking this drug that Merck was pushing its doctors to prescribe. Now I understand why my doctor had this machine in his office to begin with!
6
When Dr. Carlson says, "stick with the science," she of course means "listen to the Allergan sales reps." I find it really suspicious that this article doesn't specifically name the drug or drugs being discussed, and I'm 90% sure this article is an ad.
16
The side effects from these drugs can be life altering. Concerned with gastric side effects, my sister (a healthy woman in her 50s) changed from oral to injection. A couple of years later she developed severe jaw pain on both sides. Abnormal bone began growing out of her jaw and broke through the gum tissue. You can imagine the pain. It took over a year for the abnormal bone growths to break off of the normal bone and let the gums close up. This is no minor side effect. Any possibility of such a result needs to be taken very seriously.
16
OMG, so sorry to hear about your sisters suffering. This is NOT a RARE side effect. Who's said that ? Lawyers?
2
As a physician treating geriatric patients I have always scratched my head over the research on osteoporosis drugs. The data showing any benefit is so flimsy I have never even considered prescribing one of these drugs even a single time. And it also mind-boggling how many doctors prescribe the newest pill coming down the pike without forming an independent opinion on it's benefit. My research shows that exercise and a plant based diet are the best treatment for osteoporosis.
33
I am so glad to see that this article was one of the best read and that you, as a physician, are wise and question these medications. I hope that Gina Kolata will continue her research and will write again to warn of the danger
of bisphosphonates. Their harm is not "rare". The circumstances and results of these femur fractures are devastating.
of bisphosphonates. Their harm is not "rare". The circumstances and results of these femur fractures are devastating.
5
Just out of curiosity, is there any indication that this will rebuild bone, or merely stave off further decline? Do you see any merit in consuming dairy products for a middle-aged woman? I am Vitamin D deficient and I have MS in addition to osteoporosis. In addition to taking Vitamin D supplements every day, I try to also get it as much as I can from foods I consume and my Vitamin D levels have risen. But I'm not sure if that is largely from the supplements or the nearly daily yogurt or occasional ice cream I consume.
I was on Zometa which is one of these drugs because I have multiple myeloma and have now developed severe ONJ. I've tried the LANAP laser procedure to try and stop if not reverse the situation which did help a little bit but now it's almost worse than the beginning. So now I'm stuck with an incurable cancer and a hole threatening to take over my mouth but hey what are you going to do.
6
Though advised otherwise by my doctor, I did my research and told him I would not take any of these treatments. Rare side effects? I mentioned them to one person who knew a woman (now deceased) whose thigh bone broke twice. I am taking calcium twice daily and walk over a mile daily. If there is a drug without terrible side effects, I will strongly consider taking it. Otherwise, it seems the "cure" is worse than the disease.
16
Yes, but this article does not discuss the most important aspects of this: (1) what is the underlying cause for those few who have such terrible results from the medication; can they not be pre-indentified as to increased risk, perhaps through genetics or dna testing? (2) Exactly what supplements etc. are likely to prevent osteoporosis from occurring in the first place?
12
It says in the article the drugs are off patent. Maybe she's being duped by the Allergen sales rep
1
(2):
Best prophylactic:
Plenty of calcium plus D until age 18, the critical window for building BMD. After that, calcium plus D is still helpful (especially during pregnancy, when fetal skeletal development leaches calcium from the mother's bones unless adequate circulating calcium is available), but not nearly so much as during the critical window.
Parents can make a huge difference in the lifetime bone health of their children.
Best prophylactic:
Plenty of calcium plus D until age 18, the critical window for building BMD. After that, calcium plus D is still helpful (especially during pregnancy, when fetal skeletal development leaches calcium from the mother's bones unless adequate circulating calcium is available), but not nearly so much as during the critical window.
Parents can make a huge difference in the lifetime bone health of their children.
5
The side effects are not confined to rotting jaws and broken thigh bones. Patients with esophagitis or chronic acid reflux cannot tolerate these meds--patients with peptic ulcers the same and also patients with gastritis. There are millions of patients with terrible acid reflux and recent studies have shown that the proton pump inhbitors like Nexium can lead to dementia and chronic renal failure after prolonged use. Hence, it is not as if you can give chronic reflux patients Nexium and then to top that off give them osteoporosis meds and sleep at night content, if you are a doc. Practically EVERYTHING BIG PHARMA invents comes with big fat side effects. Big Pharma will spend its time laughing at the homeopath and the naturopath and so will the traditional allopath scoff that there is nothing better than what he's got, but there is no way of knowing you will be the one in 50,000 or the 1 in 1 million and avoid a drug for its lethal effects. Also dentists are quite leery of alendronate etc-- and won't work on your mouth to do needed complex dental work if you're on them. If you weigh the risks versus the benefits, the benefits may fall on the side of alendronate, if you already have fractures or if your DEXA scan shows terrible T scores and you're in imminent danger of fractures. But it is a telling pronouncement on Big Pharma, from the public, that drugs approved by the FDA, don't sit well with them. AND most docs don't take the drugs they prescribe. Cute eh?
8
I’m 67 y/o white female with a 20 year history of severe osteoporosis. I’ve been given IV Reclast (zoledronic acid) a total of 4 times in 5 years.
Reclast is a bisphosphonic acid which inhibits osteoclastic bone resorption.
So it slows bone loss. Reclast prevented further bone loss but I was still sustaining wrist fractures with simple falls and once fracturing two vertebrae just stepping off a 4 inch curb. I had to stop golf (twisting could break my back) and tennis.
Then two years ago a rheumatologist at Emory in Atlanta started me on a 2 year prescription of Forteo (teriparatide injection) which contains a man-made form of a hormone called parathyroid that exists naturally in the body. I give myself an injection every day in the fat layer of the lower abdomen with a needle so short and so small I can barely see it--no pain at all.
While the Reclast kept more bone from disappearing Forteo actually INCREASES bone density and increases bone strength!
My bone density has increased to the point where I no longer have osteoporosis! No more fractures!
The manufacturer limits taking the medication to two years..why? Because studies in rats showed that some developed osteosarcoma--bone cancer.
Bone cancer is very rare and a few patients have developed this cancer while taking Forteo---however there are no clinical studies that show that these folks developed the bone cancer BECAUSE of Forteo or it was just coincidence.
I am VERY, VERY happy with this medication!!
Reclast is a bisphosphonic acid which inhibits osteoclastic bone resorption.
So it slows bone loss. Reclast prevented further bone loss but I was still sustaining wrist fractures with simple falls and once fracturing two vertebrae just stepping off a 4 inch curb. I had to stop golf (twisting could break my back) and tennis.
Then two years ago a rheumatologist at Emory in Atlanta started me on a 2 year prescription of Forteo (teriparatide injection) which contains a man-made form of a hormone called parathyroid that exists naturally in the body. I give myself an injection every day in the fat layer of the lower abdomen with a needle so short and so small I can barely see it--no pain at all.
While the Reclast kept more bone from disappearing Forteo actually INCREASES bone density and increases bone strength!
My bone density has increased to the point where I no longer have osteoporosis! No more fractures!
The manufacturer limits taking the medication to two years..why? Because studies in rats showed that some developed osteosarcoma--bone cancer.
Bone cancer is very rare and a few patients have developed this cancer while taking Forteo---however there are no clinical studies that show that these folks developed the bone cancer BECAUSE of Forteo or it was just coincidence.
I am VERY, VERY happy with this medication!!
14
Thanks for sharing. Do you pay out of pocket for these drugs? Do insurance companies consider them experimental?
I was one of the many crippled by bisphosphonates, erroneously prescribed for osteopenia. Following 8 years on Fosamax, I sustained a complete fracture of the right femur, a stress fracture of the left femur, 4 metatarsal breaks, and now suffer from generation of the lower spine. I'm a member of the femur fracture support group created by Dr. Jennifer Schneider. I feel it's my MISSION to inform women that these medications should ONLY be taken by those with full-blown osteoporosis and then for only 3 to 5 years, max. The benefit is done by then, and the patient has moved into that window of high risk for fracture after that. Each one, tell one!
16
An excellent place to look to see what side effects are reported for pharmaceutical drugs is RxISK.org. The biggest side effect reported for Foxomax seems to be bone fractures. Physicians need to listen carefully to their patients, not just what the drug rep. (or even the journal article - often suspect) says.
10
About 15 years ago my GYN wanted me to take estrogen. I ask what women did years ago without al these drugs. she said , They died." A year or so later I had my first bone density test which showed some osteopenia. Immediately that doctor wanted me to take Boniva. I hesitated and phoned my chiropractor who told me that it weakens the bone. For years my bones were slightly "worse" each year. Now without ever taking medication, but with lots of exercise, changes in diet and some supplements my bones are significantly better. I think every one is different. I urge others to follow their
gut instinct. As I have told more than one physician, "It's my body!"
gut instinct. As I have told more than one physician, "It's my body!"
22
"I hesitated and phoned my chiropractor"....Do you have even the slightest idea what qualifications are required for a chiropractor as compared to a medical doctor? Next time before you call your chiropractor, you might want to spend five minutes on google to educate yourself.
15
Chiropractors learn more about nutrtiition and non-drug remedies than most doctors. Are you aware that Kaiser Permanente is finally telling their doctors to recommend a vegan diet...to everyone?
nutritarian --
Good luck with that initiative, Kaiser Permanente!
Good luck with that initiative, Kaiser Permanente!
Another reason the number of prescriptions has dropped is the exorbitant cost of these drugs. My mom took one for a year in her late 80's, but even with Medicare the price was prohibitive. Once we learned of the related risks we decided she should stop taking it.
She's now 98 and has fallen (on the floor) several times over the intervening years but hasn't suffered any broken bones. She's a petite woman of average weight.
She's now 98 and has fallen (on the floor) several times over the intervening years but hasn't suffered any broken bones. She's a petite woman of average weight.
6
I am amazed in this day and time that no one, including medical professionals have mentioned some simple genetic tests (you can get your genome for 199.00) from 23andme, and send get some good information regarding your body's possible vitamin deficiencies. I was hiking in the Tucson desert for 8 years (without sunscreen) in my fifties. Went to a naturapathic MD, who suggested that I get my levels of Vit. D checked. I said no way could I be deficient in vitamin D. I hike in the desert everyday. We checked it and it was at 26 (fairly low for someone who was in the sun a lot)
5 years later went and got my genome done from 23andme and submitted it to my doctor and we found out that I have a gene that keeps me from converting the suns rays to Vitamin D. This is very common genetic problem.
I also don't convert Vitamin A to a usable form in my body. So if you are willing to dig a little deeper and find out the reasons early enough in your lifetime, this should keep you off these horrible drugs. I still don't wear sunscreen and I am 63 year old female with few wrinkles. It is not about applying sunscreen all over your body so you bones will rot when you are older. Most people are low in Vit. D and Vit. K... not calcium for heavens sake. Get your levels of Vitamin D checked and your genetic history will tell you a lot about what your body needs. Choose to go to doctors that help keep you from getting these diseases not doctors that treat you after the fact.
5 years later went and got my genome done from 23andme and submitted it to my doctor and we found out that I have a gene that keeps me from converting the suns rays to Vitamin D. This is very common genetic problem.
I also don't convert Vitamin A to a usable form in my body. So if you are willing to dig a little deeper and find out the reasons early enough in your lifetime, this should keep you off these horrible drugs. I still don't wear sunscreen and I am 63 year old female with few wrinkles. It is not about applying sunscreen all over your body so you bones will rot when you are older. Most people are low in Vit. D and Vit. K... not calcium for heavens sake. Get your levels of Vitamin D checked and your genetic history will tell you a lot about what your body needs. Choose to go to doctors that help keep you from getting these diseases not doctors that treat you after the fact.
14
Before following the advice in this post, consider also your risk for malignant melanoma. (RIP, my dear friend Maryellen.)
Even basal cell carcinoma, a more common and much more curable skin cancer, is no picnic.
The face of my blue-eyed, freckled 54-year-old husband, who grew up in the south before people understood the dangers of constant unprotected sun exposure, has been carved up repeatedly to remove basal cell skin cancers, some of which spread both laterally and down through the dermis. Over the years, I have become so good at spotting incipient lesions that I recently caught one the dermatologist missed.
There is no doubt that vitamin D is critical not only to calcium absorption but to many other physiologic functions, but it's easy to avoid deficiency without risking skin cancer. If you don't drink vitamin D fortified milk, you can easily insure against vitamin D deficiency through supplementation.
Even basal cell carcinoma, a more common and much more curable skin cancer, is no picnic.
The face of my blue-eyed, freckled 54-year-old husband, who grew up in the south before people understood the dangers of constant unprotected sun exposure, has been carved up repeatedly to remove basal cell skin cancers, some of which spread both laterally and down through the dermis. Over the years, I have become so good at spotting incipient lesions that I recently caught one the dermatologist missed.
There is no doubt that vitamin D is critical not only to calcium absorption but to many other physiologic functions, but it's easy to avoid deficiency without risking skin cancer. If you don't drink vitamin D fortified milk, you can easily insure against vitamin D deficiency through supplementation.
6
After my initial bone scan showed borderline osteopenia 5 years ago, my (then) PCP and his army of PAs simply would not let up: Every time I went in for anything I was harangued about my unwillingness to quit downhill skiing and my strong resistance to starting a BP. I was dealing with a number of other chronic health issues, including severe migraines and sleep issues, at the time and could not deal with the thought of adding yet another pill, with the potential for some irritating common side affects including back pain, stomach problems, and increased headaches, to the side affects I was already dealing with from the other drugs. And skiing was (and continues to be) an important part of my winter-time life here in Buffalo.
The harassment to take Fosamax got so bad that I eventually fired my PCP and found another doctor who understood that I was unwilling to put up with additional daily side effects in order to take a drug that at the time was coming under some serious scrutiny for being way over prescribed. (See http://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-t... for NPR's reporting on BPs back in 2009.)
Since then? I've continued to ski downhill and I've had a number of falls, including a few spectacular one, with no harm to my bones. I've concluded that my bones have always been around 1.5-2.0 standard deviations below the mean and that they're healthy enough in terms of the bone matrix and bone flexibility and strength.
The harassment to take Fosamax got so bad that I eventually fired my PCP and found another doctor who understood that I was unwilling to put up with additional daily side effects in order to take a drug that at the time was coming under some serious scrutiny for being way over prescribed. (See http://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-t... for NPR's reporting on BPs back in 2009.)
Since then? I've continued to ski downhill and I've had a number of falls, including a few spectacular one, with no harm to my bones. I've concluded that my bones have always been around 1.5-2.0 standard deviations below the mean and that they're healthy enough in terms of the bone matrix and bone flexibility and strength.
15
while your bone density might be low, the quality of the bone itself is important. Fosamax et al simply preserves brittle bone and does not allow for the bone remodeling process (shedding and growing )to take place. good for you!
9
A few years ago (2007) I was diagnosed with and successfully treated for breast cancer w/ a lumpectomy and 6 enchanting weeks of radiation, daily.
I was premenopause, and given Femara as the anti estrogen pharmaceutical of choice. About 6 months in, I had excruciating bone pain in my coccyx such that every time I sat or stood up, it hurt. I had trigger finger in both thumbs and a couple of other fingers and the diagnosis was osteopenia. My oncologist prescribed Boniva. I took one dose -- and those reading it know the rules -- be vertical, don't lie down or sit for an hour after taking it, wave a hen over your head for 30 minutes facing east, and blah blah blah. I got SO SICK from that single dose that I quit both it and the Femara.
I'm fine. The drugs are killing us worse than what they are supposed to be treating. Really, big pharma. Be ashamed.
I was premenopause, and given Femara as the anti estrogen pharmaceutical of choice. About 6 months in, I had excruciating bone pain in my coccyx such that every time I sat or stood up, it hurt. I had trigger finger in both thumbs and a couple of other fingers and the diagnosis was osteopenia. My oncologist prescribed Boniva. I took one dose -- and those reading it know the rules -- be vertical, don't lie down or sit for an hour after taking it, wave a hen over your head for 30 minutes facing east, and blah blah blah. I got SO SICK from that single dose that I quit both it and the Femara.
I'm fine. The drugs are killing us worse than what they are supposed to be treating. Really, big pharma. Be ashamed.
27
I follow the research on hormone replacement therapy closely.
I think it is high time for a second look at the benefits of low-dose estrogen replacement starting immediately at menopause. Many of the negatives associated with HRT (in the nurses study and others) are seen at much lower levels if HRT is started at menopause, not later. In addition, estrogen is a known osteo-protectant.
I have chosen a low dose HRT patch now, for a number of reasons, one of which is bone density preservation.
I think it is high time for a second look at the benefits of low-dose estrogen replacement starting immediately at menopause. Many of the negatives associated with HRT (in the nurses study and others) are seen at much lower levels if HRT is started at menopause, not later. In addition, estrogen is a known osteo-protectant.
I have chosen a low dose HRT patch now, for a number of reasons, one of which is bone density preservation.
10
I had a femur fracture from these drugs four years ago. The orthopedist who treated me while I was in Maine -- it happened while I was traveling -- said his practice was seeing about one new case a month. So maybe it's not as rare as this article wants people to believe. The pain was beyond any other I had ever experienced and some level of disability remains. The worst is that most studies now say there is no further benefit after five years. I took the stuff for ten years. At a hundred bucks a month to poison myself. I was in a hospital and two rehab places for almost two months. I still get weepy when I think about the whole horrible experience. Almost the worst was that I was never diagnosed with osteoporosis, just osteopenia.
25
My mother had horrible osteoporosis. Once an active person walking 5 miles every day, she was bedridden by the age of 73, in excruciating pain, with several spinal fractures and died not long after. I am now 60 and have had osteoporosis since I was 55. I take a therapeutic dose of Fosamax weekly and I am very physically active. I am not concerned about those rare fractures. Having seen what osteoporosis does to a person, I am willing to take my chances with preventive medication. I think not taking the medication is foolhardy.
5
“You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture,”
So 98% of people given these drugs received no benefit? Sounds like over-prescription. Better diagnostic tools are needed.
So 98% of people given these drugs received no benefit? Sounds like over-prescription. Better diagnostic tools are needed.
5
Not everyone with osteoporosis will develop a fracture. Unfortunately we don't yet have a better way of predicting who will. You could, for example, do a bone biopsy or a CT scan. But then is it worth the risk of those procedures?
1
Yes, Hugh, that's what I think. And since I had terrible side effects from Prolia I think they should be required to figure out who shouldn't use the drug before they hand it out like Haloween candyi.
8
I've skimmed many of the comments.
Here is something else we can all justly blame big Pharma (and its bought-and-paid-for Republican handmaidens) for:
Many Americans now conflate the disgusting, money-gouging, dishonest practices of big Pharma with science in general. As a result, skepticism toward science itself is building. This is a very dangerous trend.
Here is something else we can all justly blame big Pharma (and its bought-and-paid-for Republican handmaidens) for:
Many Americans now conflate the disgusting, money-gouging, dishonest practices of big Pharma with science in general. As a result, skepticism toward science itself is building. This is a very dangerous trend.
31
Well, a lot of us no longer trust standard reassurances about these expensive medications. I happen to be one those who cannot tolerate the statins - I really did try to be a good patient & adjust to them initially when my last PCP said I must take them. But the joint pain & the constant feeling that my head was full of cement were too much. I make my living with my mind so I have to have it in working order. Finally I said, "Well, I'm not taking them, so find a Plan B." He did: the inexpensive over the counter Niacin. He said he'd worried I wouldn't like the flushing effect - which goes away about three days after you start taking Niacin. I now have a PCP who has accepted that I'm not taking any statins, & given how some other nations regulate statins - the UK for instance - I have a sneaking suspicion that statins might have pushed me over the edge into diabetes too, which I miraculously don't have, knock on wood, given my family history. When this many patients won't take a medication, it's time to find a Plan B - NOT to embark on some PR campaign to override their fears.
14
I think that side effects are under-reported. I believe that the dentists & oral surgeons may see more of these debilitating outcomes than other specialists.
The Dexa test is considered the gold standard, we are told but how accurate is it and do the numbers tell the whole story or are there unintended consequences of the medications.
I am also concerned about the long term effects of the injections. Long term effects? This is a tremendously challenging problem of aging but women should be concerned about the risks vs the possible rewards and their fears not be dismissed by physicians.
The Dexa test is considered the gold standard, we are told but how accurate is it and do the numbers tell the whole story or are there unintended consequences of the medications.
I am also concerned about the long term effects of the injections. Long term effects? This is a tremendously challenging problem of aging but women should be concerned about the risks vs the possible rewards and their fears not be dismissed by physicians.
8
Forteo costs at least
$500 a month, even with insurance.
$500 a month, even with insurance.
5
Alendronates were prescribed liberally before their method of operation was understood. They "evidence" that they worked was increased DEXA scans. Well, the bone mineral density on those scans was higher because old non-functional bone had been left in place instead of being removed as it should have been. Alendronates reduce the number of the osteoclasts whose function it is to removed the non-functioning old bone cells. These drugs actually reduce the bones' ability to make new cells even further because osteoclast activity is essential for signaling osteoblasts to create new bone. If you reduce the bone removal activity by reducing the osteoclasts you also reduce the number of functional osteoblasts! These drugs have a long half life and so even those of us who stopped taking the drug almost a decade ago have some still operative. I am so angry that I was prescribed these before anyone knew how they really worked! Higher DEXA readings do not translate to stronger bones! In fact, given that the old bone crystalline structure has degraded to the quality of saltines, it is quite the reverse. For years,I have been telling anyone who will listen to get off these drugs. I will take my chances with low dose estrogen because that is one of the only two known stimulants to bone cell regeneration. (The other is parathyroid hormone as in Forteo). I will take my chances on the slightly elevated chance of cancer that goes along with hormone therapy.
10
Remember all the hysteria about HRT? Bisphoshonates were given out like crazy after that. This is the result.
Interesting that the few/10,000 adverse effects of estrogen were deemed excessively dangerous but, those same risk numbers applied to biaphosphonates are trivial. "Exceeding rare side effects", indeed.
Thanks, I'll take estrogen for my bones.
Interesting that the few/10,000 adverse effects of estrogen were deemed excessively dangerous but, those same risk numbers applied to biaphosphonates are trivial. "Exceeding rare side effects", indeed.
Thanks, I'll take estrogen for my bones.
9
Tell me, please. Does this class of drugs do anybody any good? If so, what are the odds of preventing osteoporosis or at least delaying the progression of this condition. Small odds or not, I wouldn't want to run the risk of losing my jawbone without knowing more about the good things these drugs can do. You did not say anything about that.
2
An 89 year-old got a couple bad fractures and states she is now a cripple. The usual state of health for an 89 year-old is stone dead.
People with never, ever be satisfied with the medical profession.
People with never, ever be satisfied with the medical profession.
8
Are you suggesting that it is preferable to death to lie crippled and diapered in a bed at 89?
How much time have you spent visiting loved ones in nursing homes?
How much time have you spent visiting loved ones in nursing homes?
1
Framed as if the only choices were the drugs or suffering through osteoporosis. False dichotomy.
Yes, some people will need drugs, but lifting weights, getting some sun exposure, and eating a more nutritious diet with adequate protein will go a long ways towards preventing or delaying osteoporosis in many people.
Yes, some people will need drugs, but lifting weights, getting some sun exposure, and eating a more nutritious diet with adequate protein will go a long ways towards preventing or delaying osteoporosis in many people.
9
MDs rarely think this way, in part because the vast majority of patients do not comply with lifestyle advice. Offering it starts to feel like a waste of time.
1
While the overall conclusion may be unchanged, the numbers quoted or referred to in the article simply do not add up. According to Dr Rosen,
“You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture.” But the Romosozumab clinical trial had two adverse jaw events in 3,590 patients who received the treatment. That is not one in 40,000, but is less than one in 2,000 -- and that's just in the first two years of the trial. That is an incidence rate that is more consistent with the anecdotal experiences of dentists who have commented on this article. I understand that reporting on such matters is complicated. But here may be a case in which experts who are rooting for the drugs to improve patients' quality of life may not be looking at the numbers as carefully as they should. And maybe the tradeoff is less clear cut than the reporting implies.
“You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture.” But the Romosozumab clinical trial had two adverse jaw events in 3,590 patients who received the treatment. That is not one in 40,000, but is less than one in 2,000 -- and that's just in the first two years of the trial. That is an incidence rate that is more consistent with the anecdotal experiences of dentists who have commented on this article. I understand that reporting on such matters is complicated. But here may be a case in which experts who are rooting for the drugs to improve patients' quality of life may not be looking at the numbers as carefully as they should. And maybe the tradeoff is less clear cut than the reporting implies.
16
Well played, sir - thank you for taking the time to go into the literature and dig up some pertinent information that was unreported in this article. Very informative.
4
When I read about the possible side effects of bone density drugs, I had been taking one for 5 years. The article I read also said that the positive effects of bone density drugs mostly occurred in the first 3 years. With both of those pieces of information in mind, I stopped taking the drug. What I want to relate is that the effect of the drug was extremely, positive. I had begun taking it, because, after a semi fall - I caught my foot in a rug & fell forward, catching myself with my hand against the wall. I did not hit the floor and yet, the result was that I had a spiral fracture in my upper arm, so the arm (including the hand) was useless for 7 months. A bone density test showed osteopenia. Since quitting the drug (Fozimax) about 10 years ago, I have fallen several times, due to bad night vision, but have not broken any bones. I believe that if I had not taken the drug, I would have had numerous broken bones.
3
As a physician who devoted a sizable part of my career to studying and managing osteoporosis, including my own osteoporosis, I came to regret ever prescribing bisphosphonate drugs for this indication. Not only does bone necrosis occur more often than reported, but these agents interfere with long term maintenance of bone health and integrity. While they confer short term partial protection against fragility fractures, long term effects are less well known and there is evidence and experience to consider their effects adverse. Better would be to use bisphosphonates only in the final few years of life, and as agents to lock up newly formed bone after treatment with teriparatide (Forteo). Unfortunately insurers will only support the opposite: use of teriparatide after treatment with bisphosphonates, and prior use of bisphosphonates is a powerful blocker of teriparatide, confirmed in my large published study.
42
Richard,
Thank you so much for sharing your insight and experience here. You are exactly the kind of physician we need more of in this country, and the type of physician I hope to become. I commend you for devoting much of your work to this issue (which is clearly as much a personal as a professional one), for critically evaluating and interpreting the results you encountered in yourself and your patients, and for publishing the results of your research. Bravo. Please post a link to your study if you have a chance, I would like to read it.
Respectfully,
Jordan
Thank you so much for sharing your insight and experience here. You are exactly the kind of physician we need more of in this country, and the type of physician I hope to become. I commend you for devoting much of your work to this issue (which is clearly as much a personal as a professional one), for critically evaluating and interpreting the results you encountered in yourself and your patients, and for publishing the results of your research. Bravo. Please post a link to your study if you have a chance, I would like to read it.
Respectfully,
Jordan
3
Typically, the issues people are worried about occur with much higher doses then the regularly prescribed doses -- that should be mentioned.
Doctors are handcuffed by high malpractice insurance costs and by insurance companies in general. That they've become timid in the face of that onslaught is not surprising. I think this factors in as much or more for their concern over relatively rare side effects.
Doctors are handcuffed by high malpractice insurance costs and by insurance companies in general. That they've become timid in the face of that onslaught is not surprising. I think this factors in as much or more for their concern over relatively rare side effects.
Osteoporosis is not really understood by most doctors beacuse they get propaganda from the drug companies. Fosamex, a billion dollar sales drug is supposed to reduce fractures 100%. Oh yeah. the fact is 'm normals' have 2 fractures per 100 and with Fosamex they supposedly have 1, so 100%. However, you must not take it too long because of bone damage. Lots of cost, risk and very little improvement. Also 50% of fractures occur in patients with normal bone density. 30% of fractures due to imbalance and poor shoes and slippery rugs.
For a detailed discussion of osteoporosis and the latest bone metabolism studies and how you can effect your weak bones without prescribed drugs see letswakeupfolks.blogspot.com-lets talk about osteoporosis.
For a detailed discussion of osteoporosis and the latest bone metabolism studies and how you can effect your weak bones without prescribed drugs see letswakeupfolks.blogspot.com-lets talk about osteoporosis.
3
Going from 2 to 1 fractures per 100 is a 50% reduction.
2
Just so more people can read this I'm going to quote a very important point about this article mentioned by one of the first commenters:
"It's interesting that, according to Propublica, several of the quoted physicians have received considerable sums from the pharmaceutical companies. Indeed, Drs. Rosen , Harris have received in excess of $60,000 from them. Dr, Siris--over $30,000. Perhaps this fact might "shade," if not taint the article."
To the New York Times: Did your reporter Gina Kolata do due diligence on the backgrounds of these doctors? Physicians in the pay of pharmaceutical companies are not exactly unbiased...
"It's interesting that, according to Propublica, several of the quoted physicians have received considerable sums from the pharmaceutical companies. Indeed, Drs. Rosen , Harris have received in excess of $60,000 from them. Dr, Siris--over $30,000. Perhaps this fact might "shade," if not taint the article."
To the New York Times: Did your reporter Gina Kolata do due diligence on the backgrounds of these doctors? Physicians in the pay of pharmaceutical companies are not exactly unbiased...
27
I recall reading some time ago that osteoporosis was a risk factor for a fracture from a fall --a fragility fracture -- and contributed only about 1/6 toward the total risk. Other risk factors included poor vision, poor lighting, poor muscle tone, trip hazards, lack of railings, etc. It seemed to me that the more effective treatment of osteoporosis to prevent fractures from falls would be to correct vision, improve lighting, increase exercise, remove trip hazards, install railings where needed, etc. I wonder why these other risk factors are not included in articles about osteoporosis -- and why doctors aren't talking to their patients about them.
17
God forbid if I am ever in the position where my choices are taking a drug like Fosamax, Actonel, Boniva, etc. to help prevent my bones from breaking (but possibly losing my teeth/jaw in the process) vs. not taking any of those drugs and possibly ending up with a fractured bone, but still having my teeth and jaw - guess which option will win out? No drugs - PERIOD! I'll take my chances so I can continue to have my teeth, jaw, etc. to enjoy food and eating and everything in between. I've witnessed too many people who are surviving solely on fluids for various reasons and each individual is depressed beyond words. Sometimes the cure truly is worse than the disease.
9
Like the type 2 diabetes (and other obesity-related chronic health conditions), we can expect to see a lot more osteoporosis in the coming decades.
Why? Because American children have never consumed less milk than they do today. In the diets of many children, milk has been replaced to a large extent (or completely) by soda, juice and bottled water.
Milk fortified with vitamin D is a super-rich source of absorbable calcium, the building block for bone density. The critical period for building up bone density is between birth and age 18. After that, calcium can't do nearly as much good.
Unfortunately, alternative sources such as dark green leafy vegetables are unlikely to compensate for the decline in childhood milk consumption. It takes a couple of pounds of dark greens to equal the calcium contained in a couple of glasses of milk.
When's last time you saw a kid chowing down on a bale of kale?
Why? Because American children have never consumed less milk than they do today. In the diets of many children, milk has been replaced to a large extent (or completely) by soda, juice and bottled water.
Milk fortified with vitamin D is a super-rich source of absorbable calcium, the building block for bone density. The critical period for building up bone density is between birth and age 18. After that, calcium can't do nearly as much good.
Unfortunately, alternative sources such as dark green leafy vegetables are unlikely to compensate for the decline in childhood milk consumption. It takes a couple of pounds of dark greens to equal the calcium contained in a couple of glasses of milk.
When's last time you saw a kid chowing down on a bale of kale?
4
My mother was prescribed Coumadin, a blood thinner, a year or two ago, after experiencing a blood clot in the lung. At first she seemed fine, but over the past year she's been to the emergency room four times with gastrointestinal hemorrhaging, for which she was treated with Vitamin K injections. The most recent time, my sister, a deputy district attorney, took photographs of my mother's house, saying there was so much blood it looked like a homicide scene. Mom is still suffering from anemia.
Only after this last episode did the doctor finally acknowledge the drug might be over-treating Mom's condition. A better treatment for her deep-vein thrombosis would be exercise.
My father was put on Risperdal for psychotic episodes and later for dementia. It wasn't until after he died that I discovered the latter was an off-label usage that may very well have expedited his death.
My teenage son refused to continue taking Theraflu after complaining it made him feel weird.
What the pharmaceutical companies and doctors don't seem to appreciate is the power of word-of-mouth. Statistics mean little when someone has a family member, a friend, or even a friend of a friend who has been harmed by a drug.
Anymore, I avoid going to the doctor, as I'm afraid he'll give me a prescription.
Only after this last episode did the doctor finally acknowledge the drug might be over-treating Mom's condition. A better treatment for her deep-vein thrombosis would be exercise.
My father was put on Risperdal for psychotic episodes and later for dementia. It wasn't until after he died that I discovered the latter was an off-label usage that may very well have expedited his death.
My teenage son refused to continue taking Theraflu after complaining it made him feel weird.
What the pharmaceutical companies and doctors don't seem to appreciate is the power of word-of-mouth. Statistics mean little when someone has a family member, a friend, or even a friend of a friend who has been harmed by a drug.
Anymore, I avoid going to the doctor, as I'm afraid he'll give me a prescription.
9
The worst side effects of these drugs may indeed be rare, but the lesser side effects are much more common and can be just as devastating. After taking Fosamax for six months, I developed a gastric ulcer. Unfortunately, my doctor (who was convinced it could not be a stomach problem) diagnosed it as a gallbladder problem. It wasn't until my gallbladder (which contained no stones and seemed otherwise okay) had been removed that the ulcer was finally diagnosed.
Then, last year, I was put on Raloxefene. After three months, I developed severe pain in my back and hands. Another month later, my left hand collapsed into a claw-like position, the result of extreme ligamentous laxity due to Raloxefene's hormone-like action, and my right hand was on the way to doing the same. I took myself off the drug immediately, but months of physical therapy has not fully restored the movement of my left hand and I've developed arthritis in that hand. This is a terrible liability for a professional writer like me.
So, no. Those of us who are taking our chances are not all a bunch of scaredy cats. I would love to be able to take one of these drugs, but my own experience has taught me that the extreme-but-rare side effects are not the only risks involved.
Then, last year, I was put on Raloxefene. After three months, I developed severe pain in my back and hands. Another month later, my left hand collapsed into a claw-like position, the result of extreme ligamentous laxity due to Raloxefene's hormone-like action, and my right hand was on the way to doing the same. I took myself off the drug immediately, but months of physical therapy has not fully restored the movement of my left hand and I've developed arthritis in that hand. This is a terrible liability for a professional writer like me.
So, no. Those of us who are taking our chances are not all a bunch of scaredy cats. I would love to be able to take one of these drugs, but my own experience has taught me that the extreme-but-rare side effects are not the only risks involved.
9
I live in your neck of the woods. If you find a good doctor for treating your osteoporosis in a different manner, please share here. Thanks!
I agree. The "lesser", and yet debilitating side -effects are more common and are often, I believe, what makes a person quit the drug. There is little to no mention of this in the article. I am not irrational or ignorant nor suspicious of science. But selling drugs is not equal to pure science. I started Boniva but had such exhaustion and joint and bone pain that it was difficult to do almost anything. I was in my early fifties but found it hard to walk or open a heavy door or pick something off the floor. And the symptoms don't disappear after the drug seemingly should be out of your system. The next doctor prescribed prolia which is a 6 months injection. I can't afford to lose an indefinite amount of my life in case the same thing happens. When I told him my concerns he told me to "look it up on the internet" and come back with any questions. sigh. And I believe he is basically a good doctor.
People have trouble weighing the risks of osteoporosis on the one hand versus the risks of prescription medication for osteoporosis on the other (in part) because osteoporosis is totally asymptomatic until disaster strikes.
If osteoporosis were a painful condition, patients would more carefully assess the possible benefits versus side effects before making a decision regarding medication therapy.
If osteoporosis were a painful condition, patients would more carefully assess the possible benefits versus side effects before making a decision regarding medication therapy.
2
I respectfully disagree about there being an absence of pain. I have 35% bone loss in my thoracic spine, referred to as compression fractures. Without sustaining any major fall, fracture or injury whatsoever, I nevertheless experience pain in my upper back when I am standing for more than a few minutes. If I pull muscles and strain them as I did during a recent move (but again, no major injury at all), those compression fractures on my upper spine cause me to experience serious breathing issues in my chest cavity, That condition is called Costochondritis and mine is chronic and occurs whenever I've strained or pulled muscles. Lifting an 8-pack of toilet paper off a supermarket shelf becomes unbearable. So my osteoporosis is nearly always painful for me. But that pain pales in comparison to the breathing difficulties. This article even alluded to them in a short paragraph about bone loss in the spine and consequent breathing problems.
It is so frightening to be gasping for breath in a body that has sustained bone loss in the spine. Those of us dealing with osteoporosis find ourselves caught between a rock and a hard place in treating this degenerative disease.
It is so frightening to be gasping for breath in a body that has sustained bone loss in the spine. Those of us dealing with osteoporosis find ourselves caught between a rock and a hard place in treating this degenerative disease.
1
Patients don't trust the pharmaceutical industry and have become aware of the influence Big Pharma has on their doctors. Thus they don't trust their doctors.
NPR recently aired a program showing the correlation between Dollars for Docs (Pro Publica website) and prescriptions.
Only 1% of adverse effects are reported, so how do we know a particular adverse effect is "rare"? Doctors are not required to report "side" effects (adverse effects) to the F.D.A. So where do docs get their "scientific" data?
Is it only from the trials run/paid for by the pharma company. as is often the case?
If this drug is legitimate, then it's a shame that people have grown so distrustful. But it's the fault of Big Pharma and of the doctors who don't stand up to them. Do you see drug sales reps in your doctors' office? Run away!
I'm one of thousands of victims of a drug that 1/4 of America takes: statins. I have a devastating "rare" side effect. So do two other people I know of in my small health club. So does one of the doctors from the group who prescribed statins to us.
Just Google "statin victims" and see how many hundreds of pages you'll find on the Internet. It's tragic, but patients are quite correct to watch out for themselves.
PS. If I'd lowered my so-called "bad" LDL cholesterol by 100, my heart attack risk would be lowered by .1 percent: utterly trivial. You can use the standard Framingham heart risk evaluator. The downside is horrific: statinvictims.weebly.com
NPR recently aired a program showing the correlation between Dollars for Docs (Pro Publica website) and prescriptions.
Only 1% of adverse effects are reported, so how do we know a particular adverse effect is "rare"? Doctors are not required to report "side" effects (adverse effects) to the F.D.A. So where do docs get their "scientific" data?
Is it only from the trials run/paid for by the pharma company. as is often the case?
If this drug is legitimate, then it's a shame that people have grown so distrustful. But it's the fault of Big Pharma and of the doctors who don't stand up to them. Do you see drug sales reps in your doctors' office? Run away!
I'm one of thousands of victims of a drug that 1/4 of America takes: statins. I have a devastating "rare" side effect. So do two other people I know of in my small health club. So does one of the doctors from the group who prescribed statins to us.
Just Google "statin victims" and see how many hundreds of pages you'll find on the Internet. It's tragic, but patients are quite correct to watch out for themselves.
PS. If I'd lowered my so-called "bad" LDL cholesterol by 100, my heart attack risk would be lowered by .1 percent: utterly trivial. You can use the standard Framingham heart risk evaluator. The downside is horrific: statinvictims.weebly.com
8
Docs don't believe their patients when they report side effects. Look, I am a doc and I find most docs are arrogant sons of guns. We are taught nothing in medical school about nutrition, zulch, nada about the role of stress in disease and most importantly in the world of corporate medicine and inane docu dramas for the benefit of the lawyers, we have no time to laugh or joke with our patients or listen to their interesting stories. Most new diseases and emerging infections, would be regarded as confections of the patients' minds if not for the rare doc who actually notes down what patients are saying. Corporate medicine-- it is a medicine that needs bisphosphonates--alendronate--to fracture it to pieces.
3
"You have to stick with the science..." No, you don't. You have to listen to your innermost voice and if it tells you don't take these drugs (which, by the way, have a long list of other side effects besides rotting and cracking bones) you don't. "Diet and exercise don't work" is a knee-jerk response to looking at other ways to deal with osteoporosis. Which diet? What kind of exercise? The defenders of so-called science (let's call it by its real name: Big Pharma) do not examine in detail diet and exercise or even visualization and other "far out" approaches because their minds are made up already: it's all hogwash; only pharmaceuticals work.
So one is left with fear on the one side and closed minds on the other.
So one is left with fear on the one side and closed minds on the other.
13
Bravo and I'm a doc--listen to your gut--it is usually right. There is so much flawed science out there. Recently it was reported that most of our mouse studies may be baloney because the mice are tested in the cold--easier for scientists to handle their smell in the cold and since scientists have to wear layers of protective clothing to do these mice experiments, it is also more comfortable for them to conduct these experiments in the cold--but the mice are stressed out in the cold and that puts up their stress hormones thereby throwing into doubt the results of many mice experiments--not nearly as controlled as scientists thought they were. Modern though we are we still haven't figured out GOOD science--it's all still a lot of gobbledygook, so, yes, listen to your gut.
1
These complications are real. I see 6-8 bisphosponate related femur fractures every year. Still, the risk of not treating profound osteoporosis is worse and the 1 year mortality rate after fragility fracture of the hip is greater than 20%. With proper dosage and monitoring, the risk of complication from bisphosphonates can be minimized. Unfortunately, the ads on daytime TV by lawyers trolling for clients who have unfortunately sustained a complication of bisphosponate therapy have raised the profile of this problem to the point where common sense no longer rules.
http://www.footandankle.md
http://www.footandankle.md
5
and heart disease--congestive heart failure with most bisphosphonates except alendronate and relentless body aches and pains and a doubling of esophageal cancer risk--yes, bisphosphonates are no panacea. Of course Big Pharma ain't promoting them now that they are generic. They are on to the next best gravy. Big Pharma has some wonderful drugs and I am thankful for some of their targeted cancer meds that are keeping my patients going. By the same token they have produced some doozies, expanded the indications for them, not acknowledged their side effects until the patents for these drugs are almost out and Big Pharma has obfuscated and hidden side effects that they have known from the outset about drugs like Avandia or Vioxx--we have to be vigilant. The name of their game is profits. I do believe they worry about safety too, if not out of compassion for patients or a love of the truth, out of fear that a class action suit will drown them. Despite the checks and balances in the system, killer drugs do get out and stay out, because for a set of side effects to emerge and capture the consciousness of users, it may take years. Look up blue green algae also called cyanobacteria and their connection to neurodegenerative disorders like ALS--the man who's making strides in this area, as expected, is being mocked as a pseudoscientist, by the medical establishment. He's nothing short of brilliant to keep forging.
I was recently diagnosed with osteopenia and my doctor recommended fosamax. I have not started it yet partially because of the dead jaw issue which i wanted to talk to my dentist about first as i have had a lot of dental issues over my lifetime.
I found it interesting that so many comments on this article state that they have suffered dead jaw or know someone who has. Seems really odd that if there are around 3,000 people in the USA who have suffered this based on 1 in 100,000 that so many of them would be digital NYT subscribers and write a comment, it does seem to add up. Perhaps the Times should delve into who and how these statistics are gathered.
I found it interesting that so many comments on this article state that they have suffered dead jaw or know someone who has. Seems really odd that if there are around 3,000 people in the USA who have suffered this based on 1 in 100,000 that so many of them would be digital NYT subscribers and write a comment, it does seem to add up. Perhaps the Times should delve into who and how these statistics are gathered.
12
osteonecrosis is not the only side effect that can occur. My ower jaw has resorbed over years & I've lost teeth. I (5 wks ago) had to have a bone graft & implants, that will, after healing, support a denture. The oral surgeon that did the work, debated about caring for me, since I'd been on Fosomax for many years & had only stopped it 1 yr ago this past Nov. He took a chance on me to do the surgery, because I'm in otherwise good health. Also, please read, in this article & online, about how secondary bone is grown & why this is not "good bone", why it is fragile.
The problem is precisely that too many of us are aware of the limitations of scientific research in medicine. We know that there are deep flaws in the reporting system for side-effects, for example.
And that what touted as a wonder drug at one time is later discovered to be no such thing.
And that what touted as a wonder drug at one time is later discovered to be no such thing.
8
I have osteopenia and my doctor would like me to take these drugs, and I did for a year. However, I also have terrible TMJ disorder (my dentists have told me I have one of the worst bites they've ever seen) so I already have issues with eating and the idea of taking a drug that would knock my jaw out the rest of the way does not pass the cost/benefit analysis for me. Sure, it is rare, but I will not take the chance.
6
Within my doctor's very small practice, there's been three patients that I know of, who suffered jaw necrosis from these drugs.
My mother actually died an awful death as a result of severe osteoporosis. She didn't have side effects, but the drugs didn't do much of anything either. Much, much more attention and research is needed, and fast. This class of drugs seems unsuitable for the job.
My mother actually died an awful death as a result of severe osteoporosis. She didn't have side effects, but the drugs didn't do much of anything either. Much, much more attention and research is needed, and fast. This class of drugs seems unsuitable for the job.
5
After ten years on Fosamax and later Boniva, my femur broke as I walked across a parking lot. The orthopedist who believe treated me said his practice was seeing about one case like mine a month. His take was that these drugs helped many people when taken for five years but after that there was no further benefit and a high level of risk.
I was in hospitals and then a nursing home for two months. I will never fully recover. The pain was beyond any other I have ever experienced.
I was in hospitals and then a nursing home for two months. I will never fully recover. The pain was beyond any other I have ever experienced.
12
How can it be that there are so many comments here from people who personally know someone who experienced jaw death as a result of taking Fosamax and similar drugs if the statistical rarity of this side effect is what this article says it is? I too have had direct contact with a jaw death patient in my own dentist's office. I sar in a nearby chair waiting my turn while my dentist delivered the bad news to this woman and her daughter. They two women started crying. The details of jaw death are horrific just to listen to them. The patient and her daughter felt betrayed by the doctor who had prescribed the medicine.
When my turn came, I naturally brought up the issue. My dentist told me, amd I quote, "Avoid these osteoporosis meds like the plague. Trust me, you don't ever want to have what that woman has. Jaw Death is a horrible, horrible thing, and it's just not worth the risk."
So, really?? This is a "rare" side effect?? Yet so many readers here have seen it with our own eyes?? Something is wrong with these statistics.
When my turn came, I naturally brought up the issue. My dentist told me, amd I quote, "Avoid these osteoporosis meds like the plague. Trust me, you don't ever want to have what that woman has. Jaw Death is a horrible, horrible thing, and it's just not worth the risk."
So, really?? This is a "rare" side effect?? Yet so many readers here have seen it with our own eyes?? Something is wrong with these statistics.
13
I am the target demographic for the drug companies, and had one injection of Prolia. Following the injection, my exercising, energetic, optimistic self lost 30 pounds due to vomiting, lost patches of hair, couldn't think straight, and could hardly make it through the day due to the crushing fatigue. I have now recovered, and will never have another injection. The tone of this article suggests that the only side effects are the rarest ones, and fails to mention the side effects, while not life-threatening, that impact daily living. We don't need this chastisement, and these drugs are not without their shadow sides.
15
Cost also plays a role. Forteo, at over $500 per month, is prohibitive for many people.
4
As a scientist and current clinical manager of an Osteoporosis Center, I have borne witness to the revolution in the world of osteoporosis. The science is clear: increases in bone mass are real, fractures are prevented. Most clinicians attempt to inform patients of the risks vs. benefits, but fear/anxiety persists.
I hope Ms. Kolata's article will force conversations between patients and physicians, physicians and colleagues as well as between patients. In our consultations, side effects are discussed. After the thousands of the individuals I have seen over 20 years, I know that side effects are very rare, but patients go out of their way to avoid meds if they have any wiggle room. The internet teems with negative articles on osteoporosis meds and no real science is ever discussed.
Osteoporosis is a common disease in our aging population, and its silent nature makes it difficult to understand until the fractures begin. We can manage and treat very few of the diseases of the elderly, but osteoporosis can be treated, the symptoms and future risks of fractures reversed or eliminated when we couple the technology of bone density with our armament of treatments and a bone healthy life-style.
It's too risky not use all the means necessary to eliminate the life threatening outcomes of hip fracture. I hope that Kolata's article will awaken all those involved in the osteoporosis world...which should be everyone with a backbone.
Michael T. DiMuzio, Ph.D.
Bannockburn, IL 60015
I hope Ms. Kolata's article will force conversations between patients and physicians, physicians and colleagues as well as between patients. In our consultations, side effects are discussed. After the thousands of the individuals I have seen over 20 years, I know that side effects are very rare, but patients go out of their way to avoid meds if they have any wiggle room. The internet teems with negative articles on osteoporosis meds and no real science is ever discussed.
Osteoporosis is a common disease in our aging population, and its silent nature makes it difficult to understand until the fractures begin. We can manage and treat very few of the diseases of the elderly, but osteoporosis can be treated, the symptoms and future risks of fractures reversed or eliminated when we couple the technology of bone density with our armament of treatments and a bone healthy life-style.
It's too risky not use all the means necessary to eliminate the life threatening outcomes of hip fracture. I hope that Kolata's article will awaken all those involved in the osteoporosis world...which should be everyone with a backbone.
Michael T. DiMuzio, Ph.D.
Bannockburn, IL 60015
4
I took Fosomax for maybe 7 or 8 years when I was diagnosed with osteopenia. After a long time I literally could no longer "stomach" this medication. My doctor agreed that I could go off of it for a time. I happened to have periodontal work done, and that doctor told me that Fosomax stays in your body for at least 7 years. But the nausea stopped, I have periodic bone scans. But I don't think I will ever go on that medication again. I'm wondering why the on-again, off-again regimen isn't used more with this medication if it does remain in your body for years after you're off of it?
4
I recall seeing data that showed that while these drugs are effective in building bone density, they do not seem to be all that effective in preventing fracture. Bone density is what we know how to measure and bone density is what we know how to treat, but I suspect that there is more to bone health than density.This article discussed the rare but very serious risks to the bone density drugs, but did not address the more common and unpleasant side effects (esophageal irritation, heartburn) that causes many (such as myself) to abandon the oral medications. I really did not want to end up, years later, with esophageal cancer as a result.
6
What is the reason the whole article has been written using generic drug names? Readers would have instantly recognized brand names, especially Fosamax, which shows up in your article only as alendronate, and known that they had heard something about the side effects before reading it. It's a drug, not a copy-cat killer you have to avoid press glare to prevent.
Elsewhere, Thomas Edsall wrote an entire article about psychological reactance, the contrary behavior associated with being told to think, do, or say something by someone whose authority one doesn't acknowledge. Isn't there going to be reactance to an article that is edited to keep patients from making associations the doctors don't want them to make?
Elsewhere, Thomas Edsall wrote an entire article about psychological reactance, the contrary behavior associated with being told to think, do, or say something by someone whose authority one doesn't acknowledge. Isn't there going to be reactance to an article that is edited to keep patients from making associations the doctors don't want them to make?
4
American doctors are more influenced by the pharmaceutical industry than doctors anywhere else in the world. Big Pharma dominates the pages in medical journals, and, for example, has convinced cardiologists that if there is any kind of heart malfunction, to prescribe a trifecta of dangerous drugs--a statin, a blood thinner and a beta blocker--even though there is little evidence that any of the three will do more good than harm.
Doctors are wined and dined by the pharmaceutical industry, "thought leaders" among doctors are identified by their prescription patterns, and rewarded with $thousands to organize luncheons, or other low key meetings where a particular drug may be promoted.
Doctors also tend to ignore patients' reports of adverse side effects from drugs they have prescribed, pooh-poohing them as being insignificant. My own experience with a bone "strengthener" was almost immediate acute abdominal pain. I learned from that experience that I was my own best advocate regarding drugs, so I always google "adverse side effects".
Many sources, including a study published by Harvard University, state that there are about 128,000 deaths annually in the U.S. from prescribed medications. The European Commission estimates "that adverse reactions from prescription drugs cause 200,0000 deaths" every year--"so together, about 328,000 patients in the U.S. and Europe die from prescription drugs each year." Exercise caution when taking any drug.
Doctors are wined and dined by the pharmaceutical industry, "thought leaders" among doctors are identified by their prescription patterns, and rewarded with $thousands to organize luncheons, or other low key meetings where a particular drug may be promoted.
Doctors also tend to ignore patients' reports of adverse side effects from drugs they have prescribed, pooh-poohing them as being insignificant. My own experience with a bone "strengthener" was almost immediate acute abdominal pain. I learned from that experience that I was my own best advocate regarding drugs, so I always google "adverse side effects".
Many sources, including a study published by Harvard University, state that there are about 128,000 deaths annually in the U.S. from prescribed medications. The European Commission estimates "that adverse reactions from prescription drugs cause 200,0000 deaths" every year--"so together, about 328,000 patients in the U.S. and Europe die from prescription drugs each year." Exercise caution when taking any drug.
6
Big pharma only cares about making profits and money not about patients and safety. Most of the drugs advertised by big pharma have potential side effects that are worse than what the symptoms the drugs are supposed to treat.
2
Careful questioning by doctors is essential when making a prescription for osteoporosis drugs. My physician ordered them for me online saying I could pick them up at the pharmacy. She didn't talk to me first and didn't think to explore possible complications, as she didn't know that I had a seriously compromised jaw due to chronic childhood pre-antibiotic infections. For me, it was not worth the risk. I changed docs.
1
I took alendronate for the recommended 5 years, plods calcium and Vitamin D. My treatment ended age 58. My aunt and uncle in rural Ireland were diagnosed in their early 80's went for the shots every month. My bone density insubstantially improved, when I began walking 8 blocks 2 x daily. My osteopenia was diagnosed 5 years after I survived a massive SAH.
1
HOrmone replacement therApy.
3
I hope I am quoting him correctly: My dentist, who has a degree in biochemistry, told me that the doses of bisphosphonates are not carefully adjusted for the individual taking them. Which is true of other medications also. A person six feet tall should not be given the same dosage as someone five feet tall.
I found that Fosamax no longer makes different sized dosages. I tried a generic at half strength and got bad digestive problems (which I did not get years ago when I could modify the dosage of Fosamax.) My choice was to mess up my digestive system by continuing, or to stop, which is what I did.
I have not been prescribed Forteo or Prolia, but again wonder about the dosages.
I found that Fosamax no longer makes different sized dosages. I tried a generic at half strength and got bad digestive problems (which I did not get years ago when I could modify the dosage of Fosamax.) My choice was to mess up my digestive system by continuing, or to stop, which is what I did.
I have not been prescribed Forteo or Prolia, but again wonder about the dosages.
3
All medications should be prescribed and taken after a clear understanding of both the risks of the medication and the benefits. This is no different.
Treatments for cancer - curative treatments - have some awful possible side effects. Rare as these side effects may be, they are real and discussed with patients before starting treatment.
Should that patient at risk of death or severe morbidity from the illness they DO have avoid life saving or morbidity sparing treatment because of the very low potential risk of a side effect they MAY get one day?
It is for the individual to decide. Your doctor's job is to give you advice and explain the science behind a recommendation - nothing else.
Treatments for cancer - curative treatments - have some awful possible side effects. Rare as these side effects may be, they are real and discussed with patients before starting treatment.
Should that patient at risk of death or severe morbidity from the illness they DO have avoid life saving or morbidity sparing treatment because of the very low potential risk of a side effect they MAY get one day?
It is for the individual to decide. Your doctor's job is to give you advice and explain the science behind a recommendation - nothing else.
1
The health care and pharmaceutical industries need to acknowledge that there have significant trust issues with the general public brought on largely by their own behavior. Until they changed their behavior and demonstrate that patient health is a primary concern this will continue.
4
Good god, if I wasn't scared of these drugs before (I don't need them yet), I sure am now after reading these comments! The complications don't sounds so "rare."
12
People with a bad anecdote to share are highly motivated to share that anecdote.
In addition, most people who see a correlation conclude that it must imply causation – – one of the most commonplace and dangerous logical fallacies.
Never use personal anecdotes as a basis for making important medical decisions for yourself. Look at the science.
In addition, most people who see a correlation conclude that it must imply causation – – one of the most commonplace and dangerous logical fallacies.
Never use personal anecdotes as a basis for making important medical decisions for yourself. Look at the science.
2
The plural of anecdote is not data.
1
I wonder how these respected actors who do the commercials for these drugs live with themselves. Sadly, I guess $$$$$ trumps health....
6
As a physican expert in this field, I feel the article overstates the benfits of bisphosphonate therapy. For a more critical view see: Overdiagnosis of Bone Fragility in the Quest to Prevent Hip Fracture in BMJ 2015; 350:h2088. For example, the authors estimate you need to treat 175 women for 3 years to prevent one hip fracture. Physical therapy to prevent falling is undervalued. Forteo is an alternative drug therapy is worth discussion.
14
What is the level of compliance with a physical therapy regimen among seniors?
This is just an anecdote, but the level of compliance for my in-laws was 0%. I couldn't even get them to remove the tripping hazards from their condo, much less attend balance-training PT with me as strongly urged by their caring family doctor. Even offering to take them out for a nice lunch after each session didn't get the job done. My mother in law has also refused any and all osteoporosis medication, although her bone scan now resembles an especially wispy spiderweb. What's left? Prayer, I guess.
You physicians and other caregivers who work with seniors deserve combat pay and shiny medals.
This is just an anecdote, but the level of compliance for my in-laws was 0%. I couldn't even get them to remove the tripping hazards from their condo, much less attend balance-training PT with me as strongly urged by their caring family doctor. Even offering to take them out for a nice lunch after each session didn't get the job done. My mother in law has also refused any and all osteoporosis medication, although her bone scan now resembles an especially wispy spiderweb. What's left? Prayer, I guess.
You physicians and other caregivers who work with seniors deserve combat pay and shiny medals.
2
I'm 50, I HAD osteoporosis, I was prescribed fosamax, actonel and forteo. I had a bad reaction to all 3, so I'm "unprotected" I got angry after dealing with a lot of pain from my reaction to those meds, so I bought a book, the best thing I ever did. I learned that it takes 14 vitamins and minerals to build bones, that when you exercise you have to jar your bones (jumping up[ and down 40 times a week accomplishes that). Soda pop, coffee, meat and dairy acidify your system, that destroys bones. The last dexa scan I had showed that I'd rebuilt half my spine--my bones were see through. I was told that wasn't statistically relevant and that only the drugs will help me. I fired that Dr. I dream of the day when a Dr. will discuss how I can change my life style to improve my health. I know we're all good Americans, it's easier to take a pill. The best thing you can do is educate yourself. It's the best thing I did for myself. Better Bones, Better Body by Susan E. Brown, Russell Jaffe MD and Susan Brown changed my life.
15
Patient resistance to drugs with side effects, even rare ones, is a necessary and one of the few incentives for drug manufacturers to spend more for research, development, and approval of better drugs for the same market. Otherwise, all their incentives are to pocket the profits for the life of the patent and move on to bring other drugs to market for other conditions.
2
At age 60 when I had an x-ray for a shoulder problem, I was diagnosed with osteopenia which I thought I could treat with OTC calcium supplements. Two years later, blood tests discovered that I had hyper-parathyroidism, which causes hypercalcemia, which causes calcium leaching from bone, causing my bone loss. Turns out I had a benign parathyroid tumor, which was removed by surgery. One year after surgery, my bones are starting to rebuild with careful diet, exercise, and nutritional supplements. For anyone who has bone loss, ask your doctor to check your blood calcium levels.
4
I took alendronate once a week dosage for 7 weeks, and in that time developed severe unrelenting abdominal pain (in spite of taking it exactly as ordered) and jaw pain. When I stopped taking it, those problems disappeared. Shortly after that, it was prescribed for my father who had had several broken bones. He quickly developed jaw pain, which then became an infection which broke through the skin and began to drain. Doctors finally took him off the drug. When you know how the drugs work, it is no longer surprising that there are so many problems. These drugs block the osteoclasts from breaking down old bone, but do not boost the osteoblasts to make new bone. Therefore you end up with weak old bone that breaks easily and suddenly. Researchers need to come up with new drugs for prevention of osteoporosis, that work better. Bisphosphonates are awful drugs.
8
I am giving myself daily injections of Forteo. I am on my 57th week, just over half way through the two year maximum. I have had no side effects and I don't drink more often than one glass of wine a month. Dos anyone know anything I should know? Please comment.
1
If you read down the comments, you will see dozens of reflections on the drug you take.
1
When I wrote, there were no comments about Forteo. I should have mentioned that I "flunked" fosomax. I was dizzy within a week and thought I'd had a stroke. I got out of bed and could not make it to the top of the stairs. Thus I "qualified" for Forteo.
10 years ago, one of my teeth broke off while I was eating an apple. I had a bone scan & it showed widespread osteoporosis & osteopenia in my spine, hips & femur. My naturopath recommended a course of treatment that I continue to this day. The results of my most recent bone scan showed a very small area of osteopenia in my lower spine with all other areas are normal. I have had no negative side effects from my regimen & I'm happy to say I didn't have to take any prescribed medications to accomplish this. I definitely would not make recommendations other than to say that there are many pathways to healing.
1
Would love to know details of your regimen - ?
I take Country Life Triple Action Bone Solid 3 capsules in the morning & 3 before bed and Doctor's Best Strontium Bone Maker 2 capsules in the morning. I do not receive financial support from these companies--they're the brands I've continued to take. I buy these products from Amazon because their prices are best.
Before taking the advice of any "professional groups", such as the ones stated in this article, it is always helpful to find out who funds them. Often, the bulk of their support comes from the pharmaceutical industry.
3
Bisphosphonates have been significantly over-prescribed in the time period you write about. In the early enthusiasm for these drugs and the use of DEXA scans identifying people "at risk" probably as many as 50% of people taking BPs are also people for whom the drugs are not indicated. These include people with osteopenia and osteoporosis not involving the hip.
It remains true that there are also people for whom the drugs are indicated who are not taking them. Thus, the true message is more complicated than the "isnt it awful" easy reportage suggested here.
It remains true that there are also people for whom the drugs are indicated who are not taking them. Thus, the true message is more complicated than the "isnt it awful" easy reportage suggested here.
5
Sadly, there is nothing in the article describing any work to determine which patients are at risk, and what the mechanism is. I do hope that work is going on so that screening can take place, and the majority of folks, who are good candidates for the drug, can be given it, while those at risk can be identified and kept safe. If it is totally random, then that should have been stated as well. This way it is just a scare article.
A bit more research by your reporter would have been nice here!!!!!!
A bit more research by your reporter would have been nice here!!!!!!
6
'But to many, it matters little that the drugs’ frightening side effects are extremely rare. Estimates are that 10 to 40 in 100,000 osteoporosis patients taking the drugs — including alendronate, ibandronate, risedronate and zoledronate — have sustained broken thighbones. Fewer than one in 100,000 have had the jawbone problem.'
In most fully civilised western nations, the murder rate is now between 1 and 2 per 100,000. And that's, in effect, the mean arithmetical average rate across the populace of an entire nation that overestimates, therefore, the murder rate in middle-class communities.
Hence, a rate of 10 to 40 per 100,000 is between five and forty times the murder rate in a low-crime, middle-class western community. In other words, not extremely rare at all.
'Extremely rare' in epidemiology is obviously an imprecise and flexible term, but I suggest it ought to be used only to indicate a rate of less than one in a million.
In most fully civilised western nations, the murder rate is now between 1 and 2 per 100,000. And that's, in effect, the mean arithmetical average rate across the populace of an entire nation that overestimates, therefore, the murder rate in middle-class communities.
Hence, a rate of 10 to 40 per 100,000 is between five and forty times the murder rate in a low-crime, middle-class western community. In other words, not extremely rare at all.
'Extremely rare' in epidemiology is obviously an imprecise and flexible term, but I suggest it ought to be used only to indicate a rate of less than one in a million.
5
"A 50-year-old woman has a 50 percent chance of having an osteoporotic fracture in her remaining years. The drugs, meant to be started when bone density falls very low and the chance of a fracture soars, can reduce that risk by half, studies show."
I think those two sentences are about different statistical probabilities.
I think those two sentences are about different statistical probabilities.
1
Oh yes, of course, we should believe this "exceedingly rare" claims for side effects? Since no one keeps track of side effects, the numbers quoted here are made up out of thin air. No one has a vested interest in tracking the information and many have a vested interest in using the drugs.
9
My understanding is that there is not really a good correlation between bone density and fracture risk, but the correlation is between bone matrix strength and fracture risk. When I pointed this out to the PA who was hard selling me on drugs, she said,"Yes, that is true, but we don't have a non invasive way that we can measure bone matrix strength." Also, many of those bone density measuring machines that you see are provided to clinics free of charge by the makers of bone drugs!
7
This is incorrect information.
Reduced bone density -- by itself -- is strongly correlated with increased fracture risk.
There is a consistent doubling of bone fracture risk for every standard deviation of reduction in bone mineral density (BMD). This is true regardless of the site or type of fracture.
Hundreds if not thousands of high-quality studies have established this relationship beyond question.
Reduced bone density -- by itself -- is strongly correlated with increased fracture risk.
There is a consistent doubling of bone fracture risk for every standard deviation of reduction in bone mineral density (BMD). This is true regardless of the site or type of fracture.
Hundreds if not thousands of high-quality studies have established this relationship beyond question.
1
No we will see hundreds of comments containing personal anecdotes people will find more compelling and convincing than all carefully controlled, statistically significant scientific studies put together.
Not to mention comments from people who (understandably) are revolted by the practices of big Pharma and are therefore eager to irrationally reject any prescription medication regardless of the science.
I predict that, taken as a whole, the comments on this article will confirm the point of the article itself:
For most people, evidence and science will never trump a vivid anecdote or pre-existing bias.
Not to mention comments from people who (understandably) are revolted by the practices of big Pharma and are therefore eager to irrationally reject any prescription medication regardless of the science.
I predict that, taken as a whole, the comments on this article will confirm the point of the article itself:
For most people, evidence and science will never trump a vivid anecdote or pre-existing bias.
16
The science of osteoporosis is complex and our interventions of meager benefit. Dr Nortin Hadler, an esteemed physician with the highest credentials, has written extensively about the creation of the disease called osteoporosis. The medicalization of aging is rampant. Fortunately many informed patients are on to the con.
4
anecdotes x N = data
Also as pointed out here, there is no way to report side effects, so they are more common than the industry admits
Also as pointed out here, there is no way to report side effects, so they are more common than the industry admits
Fosamax caused osteonecrosis in my jawbone; I almost lost an implant 10 years ago but my periodontist was able to save it. It was widely reported even then. Merck makes it impossible to report: Would not take a statement from the dentist - only my doctor, who refused because she had no way to verify it. Writers don't understand the pain and confusion they cause by promoting big pharma at the expense of the patient. Exercise and diet are the cure.
22
Studies show beer consumption can create stronger bones due to the silicon content. And IPA, India Pale Ale, has the highest silicon, followed by other ales.
7
For some reason, the article does not mention several alternatives to bisphosphonates that I found last year with some relatively easy google searching. When my most recent bone density test indicated osteoporosis, I finally agreed with my primary care physician that it was time to talk about taking drugs. She gave me an overview of the current medical thinking, although she emphasized the positive effects of diet and exercise more than your article implies. (By the way, the National Osteoporosis Foundation recommends reducing salt intake. I hardly see that mentioned anywhere.) She referred me to a specialist, who I will see later this month, because she said if she prescribes one of the expensive low-side effect alternatives to bisphosphonates, my (private) insurance will deny it, but if a specialist prescribes one, it may be approved. The alternatives that I found online (and my doctor said my list was accurate) are (1) Raloxifene (Evista), a hormone therapy. Side effects include hot flashes and an increase in the risk of blood clots. (2) Denosumab (Prolia), by injection @ six months. Side effects include back and muscle pain. (3) Teriparatide (Forteo), by injection. Side effects include headache, nausea, dizziness, and limb pain. I'll be going to my specialist appointment with all of my insurance fingers and toes crossed.
2
My healthy mother had four infusions of these treatments in her late 70s. They always seemed to make her very ill and did not appear to make her less frail. Her PCP insisted she continue. However, she listened to her body and stopped. She got plenty of exercise and nutrition, calcium, bone-building minerals, etc, in her diet. She then developed a bone marrow malignancy (rare side effects of these osteoporosis treatments that are pushed on too many patients). She thinks she would have been better of never having the infusions that her PCP insisted on as part of his cookie-cutter medical care for older women. NOW she is very frail and very ill. So heads up to patients...and yes every patient's needs are different.
13
You grant that every patient's needs are different yet use your mother's negative experience to generalize to the whole medical profession. Your comment is a great illustration of what the article is about.
If you lived your entire life using the same logic that is used to determine the risk associated with drugs, you would never drive a car, walk across the street, fly in an airplane, take a cruise, climb a ladder; in short, you'd never leave the house, but even there, according to statistics, you are not safe. And, yet millions and millions of us go out every day facing a world of risk. To not take advantage of a drug that can potentially keep your spine from disintegrating little by little because 10-40 women out of 10,000 experience side effects is nothing short of ridiculous. One in 606 people will be injured in a car accident in their lifetime, one in 1,797 will be killed by a fall down stairs, one in 9,737 will be killed in a plane crash. We face bigger odds of death or injury every time we wake up in the morning. We should not allow ourselves to become so afraid of science that we lose perspective.
15
Amen to all you stated!!!!
Well, how about considering how well reported the stats are from auto accidents and airplane crashes. Who says only 10-40 women out of 10,000 reported side effects? How do we know that?
When the reporting of side effects from these serious drugs is completely open and can be done by both doctors and dentists and not controlled by the company that has the most to lose, THEN we'll be able to make well informed choices. I believe in science. I believe in living life without fear. But Big Pharma? Not so much. The docs in their pockets? Not so much.
When the reporting of side effects from these serious drugs is completely open and can be done by both doctors and dentists and not controlled by the company that has the most to lose, THEN we'll be able to make well informed choices. I believe in science. I believe in living life without fear. But Big Pharma? Not so much. The docs in their pockets? Not so much.
6
This is a poor comparison. The immediate benefits of using transportation, crossing streets and climbing stairs are obvious to us every day. Your quality of life would be severely diminished if you shut yourself in a room 24/7 to avoid risks.
The benefits of these drugs remain poorly defined and controversial. The key word in your comment is "potentially." Here's a better comparison: say some shady company invents a strange new machine that they want you the climb inside every day. They tell you it might "potentially" improve your quality of life in the future. (But it might not. The chance of it improving your quality of life is, in fact, an unimpressive 2%.) The machine is uncomfortable and unpleasant, and you keep hearing about people who've had painful, life-altering accidents in the things. You probably wouldn't want to go inside the new machine anymore. But you'd still climb stairs and cross the street, even though the risks might be higher.
There's a difference between being "afraid of science" and blindly following every questionable suggestion that comes along, just because the person making the suggestion claims that "science" backs them up. The medical/ pharmaceutical world has earned the distrust many people have toward them.
The benefits of these drugs remain poorly defined and controversial. The key word in your comment is "potentially." Here's a better comparison: say some shady company invents a strange new machine that they want you the climb inside every day. They tell you it might "potentially" improve your quality of life in the future. (But it might not. The chance of it improving your quality of life is, in fact, an unimpressive 2%.) The machine is uncomfortable and unpleasant, and you keep hearing about people who've had painful, life-altering accidents in the things. You probably wouldn't want to go inside the new machine anymore. But you'd still climb stairs and cross the street, even though the risks might be higher.
There's a difference between being "afraid of science" and blindly following every questionable suggestion that comes along, just because the person making the suggestion claims that "science" backs them up. The medical/ pharmaceutical world has earned the distrust many people have toward them.
8
I wonder whether the organizations referred to in the article are funded by the pharmaceutical industry.
8
Now we will see a string of skeptical comments, each containing one personal anecdote seeming to confirm that avoiding prescription drugs for osteoporosis is a good thing. You know, "I stopped taking it that very day, and I've been just fine!"
The limitations of our human psychology make a few vivid personal anecdotes much more compelling to us than all of the carefully controlled, statistically significant long-term studies put together.
In addition, most of us will never truly internalize the reality that correlation does not prove causation.
We are a brilliant species afflicted with a rich and varied assortment of hardwired, maladaptive stupidities.
The limitations of our human psychology make a few vivid personal anecdotes much more compelling to us than all of the carefully controlled, statistically significant long-term studies put together.
In addition, most of us will never truly internalize the reality that correlation does not prove causation.
We are a brilliant species afflicted with a rich and varied assortment of hardwired, maladaptive stupidities.
7
How does FDA's failure to require that doctors report adverse drug effects fit in with the "carefully controlled, statistically significant long-term studies"?
1
The issue is not the drugs. It the developed distrust taking place between patients and doctors.
Patients, are hammered with adds on TV promoting drugs and feel their care givers are turning into agents for the drug companies.
A five min. visit and take this pill is what most people are dealing with from their care givers. It's not really the doctors fault either, they are paid to assess and solve quickly. But, when media, and anyone with a computer decides to sensationalize a fraction of a percent of problems then we get this end result.
Patients, are hammered with adds on TV promoting drugs and feel their care givers are turning into agents for the drug companies.
A five min. visit and take this pill is what most people are dealing with from their care givers. It's not really the doctors fault either, they are paid to assess and solve quickly. But, when media, and anyone with a computer decides to sensationalize a fraction of a percent of problems then we get this end result.
8
I am a 94 year old women with bad posture due to two spinal fractures caused by catastrophic incidents. I took Fosamox for 14 years because no MD told me to stop. I took nothing for awhile, then Forteo. Then nothing and now Actonel. In all that time my density has not changed. I am a vegan, and eat very healthy food and take lots of supplements and go to gym most days. My MD wants me to take Prolia, but I will not. Read Worst Pills, Best Pills (my bible)!!! I have had a few flops, but no damage. Someday we will get the unadulterated truth about medications. I repeat, read Worst Pills, Best Pills.
5
What I'm waiting for is an explanation for the sudden femur fractures and "jaw rot." It's bad enough to be expected to take a drug to help prevent bone break when one of the possible, if "rare," adverse events can be bone compromise, but to not know why is it happening is just not acceptable. When no one could answer that question, I stopped taking Boniva. I reasoned if it could degrade one bone and cause a nontraumatic break in another, something was going on that was not accounted for, and other things could be happening as well that might not show up for years.
I break bones. Finger, wrist, arm at elbow, both legs, ribs, many toes. I understand the risk I may be running without a BP drug, but I'm waiting for those answers, and better bone strengtheners. In the meantime, I'm hoping that a daily walk on clear, paved walkway to reduce trip risk, fall prevention strategies, and a good diet with supplemental calcium and other nutrients will help prevent more breaks.
Pharma, keep working!
I break bones. Finger, wrist, arm at elbow, both legs, ribs, many toes. I understand the risk I may be running without a BP drug, but I'm waiting for those answers, and better bone strengtheners. In the meantime, I'm hoping that a daily walk on clear, paved walkway to reduce trip risk, fall prevention strategies, and a good diet with supplemental calcium and other nutrients will help prevent more breaks.
Pharma, keep working!
3
Good discussion. A bit too pro-drug. As a fan of the information available at the National Library of Medicine, there is a great discussion of the complex age, diet, exercise and similar issues associated with bone health at: https://www.nlm.nih.gov/medlineplus/osteoporosis.html.
There is much to do before medication, yet medication may be needed and valuable. Read on!
There is much to do before medication, yet medication may be needed and valuable. Read on!
2
I do not know what is happening to everyone in this country. Forty years ago I imagined just how far our society would progress in the future with the advancements of science and knowledge. Everywhere I turn these days I hear more stories of people in deep, deep denial of science and fact. Climate, immunizations, medical, social, economic; the list goes on and on. And it seems to be getting worse by the year.
4
Unfortunately, also Gina Kolata does not know the eistence of Quantum Biophysical Semeiotics Osteoporosis Constitution-Dependent, Inherited Real Risk, bedside diagnosed from birth with a common stethoscope and removed by inexpensive Restructuring Mitochondrial Quantum Therapy. Despite the Primary Prevention is notoriously the best among all other therapy, such a epidemic continues because Primary Prevention is not politically correct.
References at request of Gina Kolata.
References at request of Gina Kolata.
1
Where is the discussion of the measures that are taken for osteoporosis in Japan or Germany? In Japan they take menatetrenone (a version of vitamin K-2) and in Germany strontium ranealate (patented and not available here, but strontium citrate is commonly available). These simple vitamin remedies have been shown to be effective and in the case of strontium, there are longitudinal studies that have been running for at least 8 years. Are we are so dominated by the drug industry that the only solution we can see is to take drugs to subvert the normal processes of the body?
10
I agree with you that we should look across borders more for fresh, effective approaches. And not just in the healthcare area.
But – – "the normal processes of the body" should not be subverted?
This is called the naturalistic fallacy. Sometimes the normal processes of the body are your friend, and other times they're not. The normal processes of my body would have had me dead at least a decade ago but for surgery and medication.
You are subverting the normal processes of your body every time you get a filling, disinfect a wound, or put on your eyeglasses.
But – – "the normal processes of the body" should not be subverted?
This is called the naturalistic fallacy. Sometimes the normal processes of the body are your friend, and other times they're not. The normal processes of my body would have had me dead at least a decade ago but for surgery and medication.
You are subverting the normal processes of your body every time you get a filling, disinfect a wound, or put on your eyeglasses.
1
Good Job America. "“Ninety percent of patients, when you talk to them about starting one of these drugs, won’t go on,” said Dr. Paul D. Miller, medical director of the Colorado Center for Bone Research, a medical practice in Lakewood. “Ninety percent who are on the drugs want to come off. The fear factor is huge.” Direct advertising/marketing of prescription drugs should be banned. It's nothing more than a gigantic profit center for researchers, developers and investors. The side effects of most of these drugs are VERY scary and far outweigh the benefits. Grassroots action to stop using them is the solution until OUR Congress outlaws advertising for prescription drugs.
14
The two points you make don't partner very well.
I do agree with you that prescription drug advertising to consumers should be banned, as it is in every other nation but one (New Zealand, which regulates it far more strictly than we do).
But – – in the case of the osteoporosis drugs, if direct-to-consumer advertising were so effective, the vast majority of patients would not be ignoring medical advice and rejecting the drugs!
I do agree with you that prescription drug advertising to consumers should be banned, as it is in every other nation but one (New Zealand, which regulates it far more strictly than we do).
But – – in the case of the osteoporosis drugs, if direct-to-consumer advertising were so effective, the vast majority of patients would not be ignoring medical advice and rejecting the drugs!
1
I think the problem with the direct to consumer advertising of the BP and other anti-osteoporosis drugs is that it reinforces a doctor's insistence that you absolutely must start taking one of these drugs after one initial bone scan shows even minimal "bone loss."
For all those posting that they too are in that so-called "rare" category, we have an online support group which would welcome you with open arms and broken legs and other parts!! Our support group was found by Dr. Jennifer Schneider, who also sustained the femur fractures. Contact her at: Jennifer P. Schneider, M.D.,Ph.D.
[email protected]
3052 N Palomino Park Loop
Tucson, AZ 85712
520-990-7886 Cell Phone
The casual readers need to know we are far from rare!
[email protected]
3052 N Palomino Park Loop
Tucson, AZ 85712
520-990-7886 Cell Phone
The casual readers need to know we are far from rare!
18
Our people have a problem in judging relative risks. This is a bit like those folks who are afraid to fly to France because they are afraid of ISIS when the greatest time of danger is their drive to an american airport.
4
It's not just "our people."
Giving irrational and disproportionate weight to anecdote and emotional bias to impersonal scientifically derived statistical fact is a well-studied feature of human psychology.
Giving irrational and disproportionate weight to anecdote and emotional bias to impersonal scientifically derived statistical fact is a well-studied feature of human psychology.
1
So, relatively speaking, it would be better to have to sip food through a straw due to non-healing jaw rot in one's 60s or 70s (the typical age for osteo drugs' being prescribed), or to sustain a devastating atypical femoral fracture with little-to-no impact, than to maybe -- if you happen to be among the one in 50 who benefit from these *miracle drugs* -- prevent an osteoporotic fracture in your 80s or 90s?
I took Fosamax for years, and then after the bad news came out about microfractures in some patients I was switched to Actonel. Neither of these drugs slowed the progression of my osteoporosis. I then was put on the two-year regimen of Forteo, which must be kept refrigerated and also must be injected daily in the abdomen or thigh. Something like 95% of patients respond positively to this drug, and in many cases patients complete the regimen with bones as strong as a 30-year old. Because the drug trials for Forteo lasted only two years, the drug cannot be prescribed for more than two years. Forteo is not a bisphosphonate like Fosamax, Actonel, Boniva, etc. Those drugs prevent the body from breaking down old bone so quickly. Forteo, on the other hand, tells the body to add new bone. Forteo also changes bone architecture to make it stronger. While my bone mass did not increase after two years on Forteo, I was considered to be a "positive" responder because I stopped losing bone mass.
After that I was switched to a newer drug, Prolia. It is given by injection in the abdomen every six months. I'm thrilled to say that after 4 years on Prolia I have steadily added new bone for the first time since I was diagnosed with osteoporosis. While my friends are resisting helpful meds - and breaking hips - I've had no bone fractures.
My point is: there are a variety of drug options for osteoporosis patients. The key is finding an expert to help you get the right medications.
After that I was switched to a newer drug, Prolia. It is given by injection in the abdomen every six months. I'm thrilled to say that after 4 years on Prolia I have steadily added new bone for the first time since I was diagnosed with osteoporosis. While my friends are resisting helpful meds - and breaking hips - I've had no bone fractures.
My point is: there are a variety of drug options for osteoporosis patients. The key is finding an expert to help you get the right medications.
78
The most helpful comment I've read.
1
What about hgh human growth hormone?
1
Of course, 30 min per day 5 days per week with light free weights and multiple reps will improve bone density better than any of the drugs. What is the cost of two 5 lb and two 10 lb weights and an exercise ball relative to the cost of the drugs? What are the side-effects of repeated light exercise?
13
It is better to use heavy weights - 10 -12 reps per set - to improve muscle mass and increase bone density..
1
I was thinking this. My 87 year old MIL has osteoporosis and spinal stenosis. She also has had, over the past 20 years, a poor track record of follow-through on any exercise or PT regimen. She does not like to exert herself. It is a pity that exercise isn't the first line of defense against bone loss and muscle atrophy.
Where is the proof of that?
1
What is lost in this discussion is the fact that if you supplement with vitamin D and vitamin K you won't have any problems with your bones. Vitamin K prevents migration of calcium away from bones to other parts of your body (which can be harmful if lodged on soft tissue, especially heart valves), and vitamin D helps build new bone mass. Add to that weight bearing exercises and food with calcium and most people will extremely healthy bones.
Why doctors think they need to put you on a drug for the rest of your life when these simple methods work and cause no side effects? Drug company profits. I would never ever take this class of drug. Consider the fact that a drug you are taking for strong bones can actually cripple you, and doctors seem to think this is an acceptable risk, especially when non harmful methods work. I see the hand of drug company profits driving this.
Why doctors think they need to put you on a drug for the rest of your life when these simple methods work and cause no side effects? Drug company profits. I would never ever take this class of drug. Consider the fact that a drug you are taking for strong bones can actually cripple you, and doctors seem to think this is an acceptable risk, especially when non harmful methods work. I see the hand of drug company profits driving this.
7
I also have refused to take any bisphosphonates even though several doctors recommended it. I have been diagnosed with osteopenia, in particular my lower back. I did chemotherapy for breast cancer in 2003 (age 49), which is definitely a factor for osteopenia/osteoporosis. I have done a lot of research to weigh the pros & cons, & I still won't commit to taking any of these drugs. I had rare side effects from the chemo. I could not tolerate the aromatase inhibitors arimidex & aromasen to block estrogen production (tamoxifen was OK). Based on my personal research & experiences, I will continue to have the DEXA test every 2 years, but I won't take the bone drugs. So far, current doctors are supportive of my decision.
BTW, I run at least 3 days a week (often training for half marathons), walk almost every day, do core/weight resistance/jumping 3-4 days a week (I also bought a weighted vest to help add resistance/weight to my lower back), bike, & hike. I feel fantastic at a soon-to-be 63 years young.
BTW, I run at least 3 days a week (often training for half marathons), walk almost every day, do core/weight resistance/jumping 3-4 days a week (I also bought a weighted vest to help add resistance/weight to my lower back), bike, & hike. I feel fantastic at a soon-to-be 63 years young.
2
My MIL was on these drugs and she is still breaking vertebra.
1
In reply to a recent comment about irrational emotional fears here is my story. I used Fosamax for 5 1/2 years but it did not prevent a fragility fracture of the spine. I stopped it when I read an article in the NYT about atypical femur fractures. Having severe osteoporosis I saw a specialist and used Forteo for 2 years. After that (in 2010) I was told to use the new drug Prolia to retain my gains in bone density. The specialist told me it was "so safe he would have his mother use it". Unfortunately, it wasn't for me. After 2 injections (11 months after the first) I was in a wheel chair unable to walk. An MRI showed stress fractures of my right hip and pelvis. Later I had other problems as the drug can harm your immune system.
3
Osteoporosis drugs are not the only ones suffering the same fate (as well as the patients).
I had a severe issue that required a steroid treatment. But the doctors were "afraid" it would lead to osteoporosis (even though I am still a young healthy woman with no other indications). When I finally got to the right doctor (the boss of one of the earlier doctors & head of the clinic), he carefully explained the extremely low risk & prescribed the drug. OMG! I'm finally starting to heal (after months of agony).
I told the story to a friend who is a doctor & she said, "oh, I agree with the first doctors. I won't ever prescribe steroids for my patients." What? I was losing weight at an alarming weight, suffering immensely, & declining fast. What kind of doctor would allow me to suffer (severely) when there was an incredibly safe drug available? Why were they so concerned with what might happen 30 years from now & not with what was happening right now? Maddening.
I had a severe issue that required a steroid treatment. But the doctors were "afraid" it would lead to osteoporosis (even though I am still a young healthy woman with no other indications). When I finally got to the right doctor (the boss of one of the earlier doctors & head of the clinic), he carefully explained the extremely low risk & prescribed the drug. OMG! I'm finally starting to heal (after months of agony).
I told the story to a friend who is a doctor & she said, "oh, I agree with the first doctors. I won't ever prescribe steroids for my patients." What? I was losing weight at an alarming weight, suffering immensely, & declining fast. What kind of doctor would allow me to suffer (severely) when there was an incredibly safe drug available? Why were they so concerned with what might happen 30 years from now & not with what was happening right now? Maddening.
4
I can't say that I am completely current w/ the efficacy of these meds but the problem often is that we measure the wrong thing to decide if they are beneficial. The knock on these meds was that they increase bone density but didn't necessarily decrease fractures. Bone was dense but just as brittle. The other issue was the supposed Vit D deficiency in the population. Its virtually impossible to avoid Vit D supplements. problem is elderly can ingest it but may not be able to process it to help bones.
This article tends to simplify the issue to "if only people took their meds." Not so sure that's the total picture. As usual in USA we tend to jump the gun and oversell medication for unproven advantage. "Ask your doctor if (blank med) is right for you"...then we get the "if you have taken (blank med) in the last year and have suffered (blank) you should call the law office of Dewy, Cheat'em and How."
This article tends to simplify the issue to "if only people took their meds." Not so sure that's the total picture. As usual in USA we tend to jump the gun and oversell medication for unproven advantage. "Ask your doctor if (blank med) is right for you"...then we get the "if you have taken (blank med) in the last year and have suffered (blank) you should call the law office of Dewy, Cheat'em and How."
6
The tragedy here is that people cannot understand the need to balance information.
The EFFECTS of the disease are real, debilitating and proven. And when people start suffering those effects -- the pain, the stoop, the fractures, the need for long term care . . . The rail against their fate, the demand more expensive medical care, they end their years in pain and suffering. This is not a fairy tale.
The SIDE EFFECTS of thefrogs are RARE. But scary media coverage wins the day just like it does wwith vaccinations and Ebola panic.
Frightening
The EFFECTS of the disease are real, debilitating and proven. And when people start suffering those effects -- the pain, the stoop, the fractures, the need for long term care . . . The rail against their fate, the demand more expensive medical care, they end their years in pain and suffering. This is not a fairy tale.
The SIDE EFFECTS of thefrogs are RARE. But scary media coverage wins the day just like it does wwith vaccinations and Ebola panic.
Frightening
4
A diagnosis of OP doesn't mean you feel any pain at all. The pain comes with the fractures. OP means your risk of experiencing those fractures is greater.
So for some of us who have had a scan that says we are at some risk, but who feel just fine should take drugs that may or may not make us miserable? That's the dilemma that many of us are facing.
So for some of us who have had a scan that says we are at some risk, but who feel just fine should take drugs that may or may not make us miserable? That's the dilemma that many of us are facing.
2
I wouldn't take most of the drugs advertised on TV, because of the incredible lists of side effects, that seem worse than the original affliction. Anything for a buck, eh?
7
Where are the comments from those who have experienced or witnessed the devastation of osteoporosis? I watched my neighbor be reduced to a doubled over, pain-riddled invalid. She said she could not tolerate the medication and chose to "ride it out." Her journey went on for years.
I, too, have been diagnosed with osteopenia. My bone density numbers have decreased despite going to the gym and yoga as well as taking calcium and eating well. At 73 I am back on Fosamax after going off for 5 years. Yes, it (like much of life) is a crap shoot and after much study, I have decided to roll the dice.
I, too, have been diagnosed with osteopenia. My bone density numbers have decreased despite going to the gym and yoga as well as taking calcium and eating well. At 73 I am back on Fosamax after going off for 5 years. Yes, it (like much of life) is a crap shoot and after much study, I have decided to roll the dice.
41
That osteoporosis "science" is based on various studies that were anyone to read and contemplate, show "data" that is relevant to only the group examined. The data ought not be generalized to the entire female population much less the population as a whole.
It is incorrect interpretation of a study; it is generalization of a particular; it is Bad Science.
As well, this opinion piece, which is all it is, is hugely biased; the story of Mr.s Canipe, for example illustrates only that she perhaps has problems with osteoporosis; it does not support the conjecture that osteoporosis drugs are without huge risk *nor* does it support some magic guarantee that were she to take one of those drugs, her problem would without doubt magically disappear. To report in such a manner might call that Bad Journalism.
And to believe propaganda and poorly formed arguments, to not question such opinion qua authoritative voice, is to be at best naive, if not simply a bit ignorant.
It is incorrect interpretation of a study; it is generalization of a particular; it is Bad Science.
As well, this opinion piece, which is all it is, is hugely biased; the story of Mr.s Canipe, for example illustrates only that she perhaps has problems with osteoporosis; it does not support the conjecture that osteoporosis drugs are without huge risk *nor* does it support some magic guarantee that were she to take one of those drugs, her problem would without doubt magically disappear. To report in such a manner might call that Bad Journalism.
And to believe propaganda and poorly formed arguments, to not question such opinion qua authoritative voice, is to be at best naive, if not simply a bit ignorant.
2
I am one of those "Rare" people and let me tell you that until they do a relevant study comparing apples to apples, that word will be used, but we are far from it! We number in the hundreds of thousands! All those that want to criticize those who don't want to take the drugs or stopped the drugs haven't got a clue! How dare you! I feel for those who cannot take certain drugs for whatever reason, however, a Canadian study shows that these fractures are not rare with one in 500—and the number climbing by the day. Other drugs with those statistics are pulled from the market! The US hasn’t done that kind of study yet. I was diagnosed with Osteopenia--not a disease, but drug companies pushed doctors to prescribe their new wonder drug—for life! What they didn't say was that the drug stays in your bones for beyond two decades with a half-life of 10 years! That is nasty stuff for people that never needed it!!! After two fractured femurs, a broken disk, (within 3 months) and most recently five fractures in my foot--there is nothing good I can say about this classification of drugs and that includes all of them. Their base ingredient and the newer drug Prolia all cause the same side effects. Non-healing is also an issue and one of my femurs had to be re-rodded after 15 months with no healing. We are out thousands of dollars with our retirement years ruined. The pain is beyond conception by most people and then there is no recourse??! Seriously? Can me anything but never call me "rare!"
13
My mother suffered terribly for years with osteoporosis. She had many small spine fractures over the years, was all bent over and had terrible pain. It is an excruciating condition that makes old age a horror. My two sisters and I show early signs of the disease. As soon as my bone scans indicate I'm ready, I will start on the drugs. I will take my chances with the slim possibility of any side effect. I've seen first hand the very real way in which osteoporosis devastates quality of life. I plan to do whatever I can to avoid that reality.
5
You had better wait until you have full-blown Osteoporosis, other wise your quality of life will be diminished to worse than what Osteoporosis could do to you! And then, only take the drugs for three years...after that you are in the danger zone.
Got a chuckle about The Times headline and the opening paragraph. When The Times has run stories on equally rare side-effects of psychiatric medications it hasn't framed these as patients suffering because they refuse to take medications that are beneficial but as appropriate fear of adverse events. Patient fears of suicide ideation due to antidepressants resulted in a reduction in prescription of these drugs and a corresponding increase in suicides.
You only need to treat 50 people to prevent one fracture. So, does that mean 98% of the patients aren't helped by taking the drug? It costs money, it has some side effects that are probably more common than rotting jaw and shattered thigh bones and it apparently doesn't benefit most of the people who take it. Why is this presented as a mystery about declining use of these types of drugs?
5
It doesn't say anywhere that the other 49 people are going to have broken bones or aren't helped. It does say that a 50 year old woman has a 50% chance of having an osteoporotic fracture in her remaining years and that the drugs can REDUCE THAT RISK BY HALF if taken properly. Don't pick out which sentences you want to emphasize out of context. That is a big part of the problem.
1
Has everyone forgotten about hormone replacement? Appropriate hormone replacement treatment completely prevents osteoporosis. The fear around HRT is completely unfounded and based on a badly flawed study. Because of these fears, women are being deprived of the huge benefits of hormone replacement therapy.
7
Doctors are very reluctant to discuss any treatment besides fosamax to start. If we want to help women lets give them the best drug that will stop the bone loss regardless of the profits of the drug companies. I believe HRT is the best way to go however, you have to find a doctor who is willing to help you. Best place to start is a university hospital. I will take my chances with HRT versus forteo, etc. By the way you cannot get forteo because I am told it is too expensive ruled by the insurance companies. Can't help women but after you break hips, etc then the money flows to the hospitals, nursing homes, etc. This is just plan madness.
2
Where is the mention of eating dairy - and its negative effects on bone health (in direct opposition to Big Dairy's marketing efforts/aka lies) in this article? Or ANY mention of staying healthy via diet and exercise?
2
Although many people have trouble digesting dairy, dairy has never been demonstrated to have negative effects on bone health. Quite the contrary, for those who can digest it, full-fat dairy is nutrient rich and supports health.
Not mentioned is that the companies no longer provide the original once-a-day pills, which were lower dosage and safer, and now sell only a higher dosage, once-a-week formulation.
1
I took fosamax for 5 years. I added estrogen/progesterone combination after a couple of years. I stopped everything when I got esophagus problems and severe GERD non responsive to nexium and other prescription or over the counter drugs. Not only there was no improvement in my DEXA scans over the 5 years, but my bone density as measured by DEXA continued to decrease linearly in logarithmic scale! Before I started fosamax, I was told I was four standard deviations below the mean and that I had the bones of a 100 year old at age 50! Eighteen years later, I am supposed to be dead, I guess. In any case, the advice then was not to take fosamax for more than five years.
2
My elderly father, a retired physician, took Fosamax, and his esophagus closed entirely. He endured tube feeding and spitting saliva into a cup for several years. It might be that he did not correctly follow the strict instructions for taking the drug, but it was a terrible price to pay.
shamemen -
For GERD, try approximately one teaspoon (or a capful) of organic, raw, unfiltered apple cider vinegar (e.g., Bragg's, Spectrum, Trader Joe's) in about 8 oz of warm water after breakfast, lunch, dinner. I was on nexium for 9 months and hated it. All of the nexium-type of drugs are the absolute wrong thing to take for acid reflux. They kill all the good flora and fauna in your gut that help you digest and to absorb nutrients. I tried the vinegar solution, and after 2 weeks, I had forgotten I had a problem. I now do this only after breakfast (originally, I never did it 3 times a day, only twice a day -- after breakfast and dinner). I have recommended this solution to many friends, and almost all have reported great results. It's natural and inexpensive. A friend who had the same problem recommended it to me. I have been on this regimen since 2009 with no problems.
I found apple cider vinegar capsules for travel this year, and although I prefer liquid, it was much easier to take the capsules on the trip.
Note: I know drinking a vinegar solution sounds counter-intuitive to acid reflux, but the apple cider vinegar becomes alkaline in your body when you drink it, thus helping with the reflux. It's great for your overall digestive system.
For GERD, try approximately one teaspoon (or a capful) of organic, raw, unfiltered apple cider vinegar (e.g., Bragg's, Spectrum, Trader Joe's) in about 8 oz of warm water after breakfast, lunch, dinner. I was on nexium for 9 months and hated it. All of the nexium-type of drugs are the absolute wrong thing to take for acid reflux. They kill all the good flora and fauna in your gut that help you digest and to absorb nutrients. I tried the vinegar solution, and after 2 weeks, I had forgotten I had a problem. I now do this only after breakfast (originally, I never did it 3 times a day, only twice a day -- after breakfast and dinner). I have recommended this solution to many friends, and almost all have reported great results. It's natural and inexpensive. A friend who had the same problem recommended it to me. I have been on this regimen since 2009 with no problems.
I found apple cider vinegar capsules for travel this year, and although I prefer liquid, it was much easier to take the capsules on the trip.
Note: I know drinking a vinegar solution sounds counter-intuitive to acid reflux, but the apple cider vinegar becomes alkaline in your body when you drink it, thus helping with the reflux. It's great for your overall digestive system.
As a 57 year old woman, now diagnosed with osteoporosis who recovering from a broken hip, this is a real dilemma.
I was healthy enough to be hiking in the Himalayas, did strength and weight training regularly and had a healthy weight (not thin) and balanced diet. No alcohol or smoking.
There is not much room to improve on these variables. I was taking D supplements, but will look into K supplements.
As usual, I have learned more from the reader's comments than the article !
I was healthy enough to be hiking in the Himalayas, did strength and weight training regularly and had a healthy weight (not thin) and balanced diet. No alcohol or smoking.
There is not much room to improve on these variables. I was taking D supplements, but will look into K supplements.
As usual, I have learned more from the reader's comments than the article !
8
"As usual, I have learned more from the reader's comments than the article !"
I couldn't agree more. The comments are why I read the Health section.
I couldn't agree more. The comments are why I read the Health section.
5
When bisphosphonates were first introduced, and long before atypical fractures and osteonecrosis of the jaw surfaced, I thought the mechanism made no sense: Retaining old bone defeats the remodeling process that maximizes bone integrity and tensile strength.
It seemed to me "the drug was teaching to the test," i.e., DEXA scans were invented. Big Pharma jumped on it and designed bisphosphonates to maximize DEXA scores, not fracture resistance, the ultimate bottom-line goal. Worse, it appeared to be *at the expense of fracture resistance*.
An on-point study last year:
Jarvinen, Teppo L.N., professor, et al. “Overdiagnosis of bone fragility in the quest to prevent hip fracture.” BMJ. May 27, 2015; 350:h2088. Web. http://www.bmj.com/content/350/bmj.h2088
It seemed to me "the drug was teaching to the test," i.e., DEXA scans were invented. Big Pharma jumped on it and designed bisphosphonates to maximize DEXA scores, not fracture resistance, the ultimate bottom-line goal. Worse, it appeared to be *at the expense of fracture resistance*.
An on-point study last year:
Jarvinen, Teppo L.N., professor, et al. “Overdiagnosis of bone fragility in the quest to prevent hip fracture.” BMJ. May 27, 2015; 350:h2088. Web. http://www.bmj.com/content/350/bmj.h2088
5
It would be great if the doctors would take the time to consider other problems you have which might contradict the medications. For example, having had HyperPARthyroidism twice being left with HypoPARAthyroidism being treated with Calcitriol which will often present with Hypercalcemia and Pseudogout. The medicine prescribed especially that which seems to target the hip, can result in low calcium and myriad of other problems. Which would be fine if doctors took the time to listen the patient.
1
I'm not so sure about how rare the side effects are; it may be that they are under reported. I took a single dose of Boniva and within a week had strong pain in the spine, my head felt like it was being squeezed and my teeth throbbed. This went on for four months. I looked for an alternative and read a research paper by two Canadian doctors (Stephen J Genuis and Thomas P Bouchard) who were able to replicate the results of biphosphonates with a protocol of over the counter supplements that include strontium citrate. I took this protocol for 3 years and had a bone scan done at UCLA this year that showed the osteoporosis I'd had in my spine had been reversed. I still have Osteopenia in the hip but that has also improved. I shared the results with my doctors and they all agreed I should stick with this, given the excellent results. I see no reason to take biphosphonates, particularly given my very bad experience with a single dose. As long as this protocol is working for me, I will not take biphosphonates.
5
Why would you think that just because you had a side effect they are underreported? People just don't get math and statistics in this country. If you and everyone you knew who took it had side effects, then maybe you would be right. But I see no evidence that they are underreported after a multi-year clinical trial involving thousands and thousands of patients who had to report to a doctor at regular intervals. You just had the misfortune of being one of the rare people who did have the side effects. It's as simple as that.
There have been numerous research papers published about doctor's resistance to reporting adverse drug reactions (check the NIH database). I reported my reaction to the drug and asked the physician if he was going to report it; he declined, saying he couldn't be sure after one dose that the drug was responsible for the side effects.
1
Boniva ruined my mother's lower teeth - she had to have them removed by an oral surgeon. Then, she could not have a partial made because her jaw bone continued to chip away. My mother prided herself in taking care of herself, and she was absolutely crushed to have this happen. I still think the whole thing was based on selling selling selling for pharma.
65
I had a bone density test in my late 40s, got a D grade. Doc put me on 2 different medications, then Boniva over 7 yrs. I had reactions no one mentioned, but was sure they came from the meds, and I think I have only recently, after another 10 years off the drugs, gotten the medications and their side effects out of my system.
More than one health care professional told me the studies show that those diagnosed with Osteoperoses who take the medications do not have fewer fractures than those who don't take the medications, and that although the bone desity looks better on the tests, the bone is brittle, that possibly the medication is stopping the bone from naturally sloughing off and thus the bones are just holding onto the old dead cells.
I tend to have diagnoses based on signs, like bone desity tests, with no symptoms, so I wait for symptoms, and avoid medications as much as possible.
I think we should try out medications if we want, but trust our own intuitive knowledge as to how they are affecting us. Muscle testing or AK/Applied Kinesiology can also help determine if a drug will be beneficial or not. Everyone is different. There is no one size fits all.
We get old, we shrink, diseases set in, we die. Eat healthy, find a form of play that gives you exercise, live, laugh, love, and as the sage and the song say, "Don't worry. Be happy."
More than one health care professional told me the studies show that those diagnosed with Osteoperoses who take the medications do not have fewer fractures than those who don't take the medications, and that although the bone desity looks better on the tests, the bone is brittle, that possibly the medication is stopping the bone from naturally sloughing off and thus the bones are just holding onto the old dead cells.
I tend to have diagnoses based on signs, like bone desity tests, with no symptoms, so I wait for symptoms, and avoid medications as much as possible.
I think we should try out medications if we want, but trust our own intuitive knowledge as to how they are affecting us. Muscle testing or AK/Applied Kinesiology can also help determine if a drug will be beneficial or not. Everyone is different. There is no one size fits all.
We get old, we shrink, diseases set in, we die. Eat healthy, find a form of play that gives you exercise, live, laugh, love, and as the sage and the song say, "Don't worry. Be happy."
1
I would direct the reporter's attention to the story from the NY Times' 'Well' section from December 21, 2015. "12 Minutes of Yoga for Bone Health." https://well.blogs.nytimes.com/2015/12/21/12-minutes-of-yoga-for-stronge...
There is research-based evidence that yoga can offer benefits that medication can't offer, like better posture, improved balance, enhanced coordination, greater range of motion, higher strength, reduced levels of anxiety and better gait. The physician's quote in the 06/02/16 article is so disempowering, "One issue, Dr. Harris said, is the relentless promotion of diet and exercise for patients with fragile bones, which, he said, is insufficient to protect them from fractures. It gives people a false sense that they can control their risk." Of course they can control their risk!!
There is research-based evidence that yoga can offer benefits that medication can't offer, like better posture, improved balance, enhanced coordination, greater range of motion, higher strength, reduced levels of anxiety and better gait. The physician's quote in the 06/02/16 article is so disempowering, "One issue, Dr. Harris said, is the relentless promotion of diet and exercise for patients with fragile bones, which, he said, is insufficient to protect them from fractures. It gives people a false sense that they can control their risk." Of course they can control their risk!!
5
Good grief - have we reached a point where "positive" drug company ads are needed to balance the typically extremely negative view you get of any drug by researching it on the internet?
If the only research about a drug you can do is what's on the internet, it's a wonder anyone ever takes ANY drugs. The shrieks by people who have been (or worse, who BELIEVE they have been) harmed by a prescription medication to ban it, while ignoring the protests by people who have benefitted from that same drug, are scary.
It's just the nature of people to go public when something goes wrong, but to stay quiet when it works. Doctors and other health practitioners don't have time to try to undo the damage done by the negative perspective.
Maybe we need to start figuring how to "teach" school children critical thinking, so that they aren't left as adults without the ability to read things dispassionately and make decisions based on facts rather than emotions.
If the only research about a drug you can do is what's on the internet, it's a wonder anyone ever takes ANY drugs. The shrieks by people who have been (or worse, who BELIEVE they have been) harmed by a prescription medication to ban it, while ignoring the protests by people who have benefitted from that same drug, are scary.
It's just the nature of people to go public when something goes wrong, but to stay quiet when it works. Doctors and other health practitioners don't have time to try to undo the damage done by the negative perspective.
Maybe we need to start figuring how to "teach" school children critical thinking, so that they aren't left as adults without the ability to read things dispassionately and make decisions based on facts rather than emotions.
2
There are other concerns with some of these drugs, particularly bisphophonates, that may inhibit potential users, in addition to the relatively rare but dramatic ones. As other commenters have noted, these particular medicines don't rebuild bone, it's still not clear how long it's safe to take them and there are numerous other factors that need to be assessed in predicting a risk of fracture. In other words, while there may be a mass freakout going on, there are also legitimate issues that need to be weighed in the balance. Let's hope researchers are currently trying to come up with more effective therapies. One of my doctors doesn't prescribe osteoporosis medications anymore, in part because the landscape is so confusing, even for a medical professional. All that said, this story is a real eye opener, and very helpful to me as a potential consumer.
3
You are correct in saying that after a few years, continued use of bisphosphonates don't clearly offer substantial additional benefits. With respect to your physician--I was involved in observing patient and physician interviews regarding osteoporosis and available treatments. It was eye-opening to realize how many physicians don't understand osteoporosis and the treatment options. It is such a common disease, that the lack of knowleldge is shameful.
The drug costs 500 twice a year. That's with Medicare doay. That's a lot of money. I feel I won't be able to afford this on a sustained basis. That's a lot of money for me. And there's no help for nonmdicaid patients. They won't hear of reducing costs. I feel trapped and furious.
2
We do have money for wars and illegals but not for women who need the help.
Dr. Harris states that diet and exercise has no effect on diminishing bone fracture occurrence . How does he know that? Is it possible the efficacy of such an approach lies beyond the purview of his expertise indeed his very training which excludes these areas of education. Politically correct medical trade journals are no substitute for knowledge.
5
Hard to know what you mean by a "trade" journal, but scientific and medical journals have a LOT more knowledge and factual information than that found in the latest tabloid. Where did you get your information on diet and exercise if not in a peer reviewed journal?
I am one of those "rare" victims of an atypical femur fracture. I started taking Fosamax in 1996 to "prevent" osteoporosis because I have a family history of the condition and am of slight build. In 2008, I began to feel pain in my right hip and groin but thought I might eventually need a hip replacement. Then, suddenly, stepping out of my car, my femur snapped.
Now, here is the most important part: My fracture was diagnosed as a hip fracture because at that time, no one had ever heard of an atypical femur fracture, and there was no medical code for the condition. In other words, there have certainly been many more than the 40 per 100,000 atypical femur fractures because they have not been correctly recognized and diagnosed. Moreover, I personally know three other people who have suffered these fractures, suggesting that for such a rate among a small group of friends and acquaintances, the statistics must be off as well.
Fosamax and other anti-osteoporosis drugs were originally designed to treat people who already had the disease, not as a preventive measure. As another comment has pointed out, merely increasing bone mass without the osteoclasts and osteoblasts necessary for proper bone turnover and bone building may leave the bones more dense but also more brittle. Think of how easy it is to break a sheet of glass with your bare hands after it has been scored.
Now, here is the most important part: My fracture was diagnosed as a hip fracture because at that time, no one had ever heard of an atypical femur fracture, and there was no medical code for the condition. In other words, there have certainly been many more than the 40 per 100,000 atypical femur fractures because they have not been correctly recognized and diagnosed. Moreover, I personally know three other people who have suffered these fractures, suggesting that for such a rate among a small group of friends and acquaintances, the statistics must be off as well.
Fosamax and other anti-osteoporosis drugs were originally designed to treat people who already had the disease, not as a preventive measure. As another comment has pointed out, merely increasing bone mass without the osteoclasts and osteoblasts necessary for proper bone turnover and bone building may leave the bones more dense but also more brittle. Think of how easy it is to break a sheet of glass with your bare hands after it has been scored.
29
This is a comment worthy of everyone's attention. The first study I'm aware of was published by Cornell Weil Medical Center in New York and reported in The New York Times in 2008. What was interesting about this study was that it was "anecdotal" in nature. The hospital took it upon itself to look back at every "atypical" spontaneous femur fracture patient that had come through their doors as a trauma patient over the course of a number of years (I believe 9 years).
Since femur fractures are rare because the thigh bone is the strongest bone in our body, the hospital found it alarming that so many atypical spontaneous femur fractures were coming through their doors. In contrast, a "typical" femur fracture would occur from a car or motorcycle accident. But these atypical fractures were occurring while the person was merely sitting, standing or walking.
I like this study because it speaks to all of us lay-folk out there who have a modicum of common sense. The study found that virtually every spontaneous atypical femur fracture patient coming through the doors of Cornell Weil had in the past, or currently, been taking Fosamax.
As a middle-aged woman with osteoporosis, I find myself caught between a rock and a hard place. My mom suffered a horrible femur fracture. So I continue to educate myself and hope that I will find a doctor who will respect my informed decision and partner with me in treating this awful degenerative disease.
Since femur fractures are rare because the thigh bone is the strongest bone in our body, the hospital found it alarming that so many atypical spontaneous femur fractures were coming through their doors. In contrast, a "typical" femur fracture would occur from a car or motorcycle accident. But these atypical fractures were occurring while the person was merely sitting, standing or walking.
I like this study because it speaks to all of us lay-folk out there who have a modicum of common sense. The study found that virtually every spontaneous atypical femur fracture patient coming through the doors of Cornell Weil had in the past, or currently, been taking Fosamax.
As a middle-aged woman with osteoporosis, I find myself caught between a rock and a hard place. My mom suffered a horrible femur fracture. So I continue to educate myself and hope that I will find a doctor who will respect my informed decision and partner with me in treating this awful degenerative disease.
I've read many of the comments, and despite the author's statistics, it seems like these side effects are more common than the studies suggest. I know that NY Times comments aren't a controlled study, but is the occurrence of something is 1 out of 40,000, how can so many readers know someone who has had one? I read four or five, which means that at least 160,000 read this article this morning and everyone who had the side effects or knows someone firsthand has written a comment. My calculations could be off, but just anecdotally, it seems far more common than indicated in the article.
17
So Fosamax (or the generic alodendrate) *might* decrease your chance of a hip fracture by 2% over time? And on the other side of the equation we have clearly higher risk of acid reflux/esophogeal cancer and an elevated risk of jaw necrosis and/or femoral fractures? Ms. Kolata comes off as a cheerleader for Big Pharma without clearly articulating the significant downside of these drugs.
14
As I mentioned earlier, hip fracture is associated with an approximately 30% risk of death within a year. Osteoporosis is not an inconvenience, it is a significant health problem in the US and the world.
Number needed to treat to prevent one fracture is about 50. Side effects to the Esophagus are common. these rare side effects are likely less rare than advertised in this article. Everyone benefits from eating a diet high in calcium, quitting smoking and walking. Walking is weight-bearing exercise for your hips and your vertebrae.
If the doctor gives appropriate full disclosure to a patient and discusses potential risk and then says to the patient and by the way I would have to treat 50 patients just like yourself this medication to prevent one fracture over the next 10 years....what is the most logical thing to do? Most patients logically choose to not take the medicine because of the marginal personal benefit. And it is a logical decision. They are not missing out on anything.
When you take the medication out of The equation that patients can actually focus on the best treatments which is weight-bearing exercise by walking, healthy diet and quitting smoking.
Osteoporosis drugs are also not being prescribed as much because most of them are off label now and the pharmaceutical industry is not pushing them as much as they used . Mercks patent on Fosamax ran out on February 5, 2008. this more than anything probably affected sales of the drug since Mark
This more than anything probably affected sales of the drug. I did not find this article to be fair and balanced but rather somewhat alarmist.
If the doctor gives appropriate full disclosure to a patient and discusses potential risk and then says to the patient and by the way I would have to treat 50 patients just like yourself this medication to prevent one fracture over the next 10 years....what is the most logical thing to do? Most patients logically choose to not take the medicine because of the marginal personal benefit. And it is a logical decision. They are not missing out on anything.
When you take the medication out of The equation that patients can actually focus on the best treatments which is weight-bearing exercise by walking, healthy diet and quitting smoking.
Osteoporosis drugs are also not being prescribed as much because most of them are off label now and the pharmaceutical industry is not pushing them as much as they used . Mercks patent on Fosamax ran out on February 5, 2008. this more than anything probably affected sales of the drug since Mark
This more than anything probably affected sales of the drug. I did not find this article to be fair and balanced but rather somewhat alarmist.
7
My mother took Fosamax for many years for osteoporosis and has since lost all but two of her bottom teeth, which are now loose, and the dentist says her bottom jawbone is practically nonexistent.
5
Osteoporosis causes bone loss. It's unfortunate, but it sounds like osteoporosis caused the near total loss of your mother's lower jawbone, not the medicine.
1
My mother died of complications from osteoporosis at age 75. I was diagnosed at age 47 with extreme osteoporosis. Knowing what she went through I went to a specialist at UCLA and gladly began a regimen to do two things: to stop the downward spiral of bone loss I was already experiencing and to strengthen my bones. I also began estrogen. Now, in my 70's I broke two vertebrae in my 50's, but nothing more. I am concerned now because I can no longer take estrogen, having recently had breast cancer. I do, however, have a Prolea shot twice annually and hope this will counterbalance that effect. The odds of breaking bones from any of the "didtronates" are very slim compared to the cancer from estrogen use, and I was willing to try even estrogen to reduce my chances to end up like my sweet mother. The future of a severely osteoporatic patient is very bleak, painful, sad and very expensive )nursiong home care).
2
I took my first dose of monthly alendronate last August. By midnight, I was having severe muscle spasms and had lost bladder control. I ended up in the ER and needed IV Valium to break the spasms. The spasms and weakness lasted about a week. Neither my PCP nor the ER doc made the connection with the drug. Two weeks later, I did. A little bit of research led me to learn that this is an underreported side effect. No lasting effects, but I lost a week of wages and a week of my life. I was a previously healthy nurse practitioner. Now I am working with a personal trainer to build muscle and balance. Theses drugs may help some, but your discussion of side effects was not thorough. I live in fear of future disability but I am reluctant to try another drug at this time.
12
The problem is that there's nothing that doesn't have potentially nasty side effects. Some of us - me included - end up not having a load of choice because our spines are breaking. Some of the medicines are used for chemo and those patients are at even greater risk.
To add to the problem, medicine and dentistry don't seem to be able to work together on this so there's a load of conflicting information and whe one has dental issues that require treatment, it's very scary. Additionally, some dentists are not willing to proceed in a conservative manner, that is, with repairing old crowns and bridges; they thus put their patients at greater risk than need be.
To add to the problem, medicine and dentistry don't seem to be able to work together on this so there's a load of conflicting information and whe one has dental issues that require treatment, it's very scary. Additionally, some dentists are not willing to proceed in a conservative manner, that is, with repairing old crowns and bridges; they thus put their patients at greater risk than need be.
2
I quit Fosamax after internal bleeding, a far more common side effect than the rare ones noted in this article. Furthermore, a year and a half of use had no effect on my bone density.
4
The number one thing a person can do to prevent bone loss is to lift heavy (relative to their strength) weights on a regular basis.
2
I haven't had a single tooth crack since I went off Fosamax. While on the drug, I had two or three per year.
7
Osteonecrosis of the jaw--which is what is associated with bisphosphonates--is NOT a cracked tooth.
For a more comprehensive and balanced view of this issue I, and many others, recommend, "The Myth of Osteoporosis," by Sanson. This well-researched and reader-friendly book explores the controversies about diagnosis and treatment recommendations. For example, despite the fact that it is normal to lose bone density as we age, the DEXA manufacturers, who select their own "normals" for comparisons, compare the data of each patient to that of 20-30 year olds not to same-age peers. Furthermore, results on the same patient can vary from machine to machine. More importantly, perhaps, is the fact that bone density is only one of several risk factors, but other factors, such as bone strength, cannot be measured at present. Sanson recommends life-style changes, such as weight-bearing exercise and practical strategies to help prevent falls.
As I have been researching my newly diagnosed condition, I have found few good studies about effects of frequency and intensity of weight-bearing exercises. Some recommendations are 3 hrs total a week, others have been 30 minutes every day. Dr. Fishman, MD, from Columbia Univ. has studied a 12-minute per day yoga program with positive results. Sadly, it seems we rarely study cost-effective, side-effect-free solutions which will not yield profits for the medical industry.
As I have been researching my newly diagnosed condition, I have found few good studies about effects of frequency and intensity of weight-bearing exercises. Some recommendations are 3 hrs total a week, others have been 30 minutes every day. Dr. Fishman, MD, from Columbia Univ. has studied a 12-minute per day yoga program with positive results. Sadly, it seems we rarely study cost-effective, side-effect-free solutions which will not yield profits for the medical industry.
9
The article failed to address an underlying reason patients refuse to take Osteo drugs: general suspicion of pharma. Although big pharma has developed many effective drugs, we all know how they price gouge. And of course, the relentless promotion of drugs on TV doesn't help either.
1
One problem is that doctors need to be as aggressive in ending a drug regimen as they are in initiating one. A woman I know was put on Fosamax for osteoporosis. After taking it for two years she asked her doctor if her condition had improved, and if she could stop taking it. A bone density scan showed it had improved and she was able to stop taking the drug. A year later we began seeing the reports of side-effects and negative results problems with long-term use.
2
There are always side effects, some worse than others. As one person suggested below, if we can get our kids to eat healthy food and get lots of exercise, then continue an active lifestyle throughout adulthood, we won't need most of the drugs being currently prescribed for a myriad of issues. It's our food and sedentary lifestyle that is the biggest risk to our health.
2
Why do we always look for chemicals to solve these problems? Doctors should strongly strongly STRONGLY encourage women (especially at-risk) to walk/exercise/MOVE to keep their bones strong. Our bodies are designed to move, not sit at desks all day. Prevention is always better than the so-called "cure."
3
Not once does mention that the bisphosphonates have a half-life of up to ten years, meaning that they remain in one's system for a decade. This not only sets them apart from most other classes of drugs; it has important implications for patients who sustain one of the "extremely rare" side effects. Osteonecrosis of the jaw (ONJ) is considered basically untreatable by the dental profession; for some people, it may resolve over time, but for others it will not, rendering their future dental care highly problematic.
Kolata also fails to mention that the FDA has become sufficiently concerned about the "extremely rare" side effects that it now recommends doctors identify patients who are candidates for a "drug holiday" -- reflecting the fact that the rates of those sustaining the "extremely rare" effects become less "rare" after the drugs have been taken for a period currently estimated at only three to five years.
Kolata also fails to mention that the FDA has become sufficiently concerned about the "extremely rare" side effects that it now recommends doctors identify patients who are candidates for a "drug holiday" -- reflecting the fact that the rates of those sustaining the "extremely rare" effects become less "rare" after the drugs have been taken for a period currently estimated at only three to five years.
6
Why don't you simply list, early on, the names of these drugs. Of course I can guess why, but surely you have more responsibility to news and truth than this.
3
Is it any wonder that people, especially women, are reluctant to take a widely prescribed drug, focused on women, after many of us were conned into taking hormone replacement drugs after menopause, with their supposed benefits. Instead many of us are now suffering the possible consequences of this" wonder" drug with breast cancer, heart disease, and other hormonal -related diseases. We question if the advertised benefits of osteoporosis drugs will some day also have ugly outcomes!
2
I don' understand why the article did not mention the names of these drugs, in terms of how they are marketed and advertised to the public. That would be more helpful than only listing their technical or official, scientific names. For the sake of context, please mention what the names of these drugs are that correlate to the TV commercials and other ads that promote them. Then you would get that, "oh, those meds, this is talking about". Between doctor and patient, these drugs are called by the names they are familiar with from the aggressive advertising campaigns the manufacturers gleefully pay for. Thanks!
5
From my perspective, the headline misstates the main reason why women don't take these drugs (they are only mildly effective) and the article goes down hill from there. Ms. Kolata appears to take industry press releases and just fleshes them out a bit. If pharma focuses on fear rather than the lack of efficacy, the industry has managed to reframe the whole issue to make women look silly rather than informed.
9
There is also research in rats showing increased bone healing using CBD, the non-psychoactive component of cannabis. I am sorry this is not mentioned and critiqued as a treatment. Cannabis is certainly not a new drug and the side effects of CBD are minimal. A study was recently published in the Journal of Bone and Mineral Research. The studies on this have been done in Israel. I am glad I live in a state where medical marijuana is legal.
2
My sister and I were both prescribed Fosamax by our doctors many years ago, though there was no history of broken bones in our elderly relatives. We dutifully swallowed the pills for a year or more, but stopped taking them when we heard about the jawbone problems. Like many people, I decided to look around a bit when my friends and I reached ages in our 70's and 80's. It was obvious (to us at least) that the skinny women were breaking bones, but the fat ones? Not so much. My, not so educated, guess is that bones that are deprived of milk products, sunlight and a reason to be strong (weight carrying) break far more often than those of older women who don't follow every food fad that comes along.
2
My husband was given these drugs when his oncologist thought he had metastatic prostrate cancer (which he didn't) and had the osteonecrosis in both sides of his jaw. It took more than two years and several surgeries to take care of the problem. It is a nasty condition. I realize my dose would be much less if I took the same drugs for osteopenia/osteoporosis but no way would I take the risk.
3
This problem likely has a pharmacogenetic solution; whereby the people with adverse effects like ONJ (osteonecrosis of the jaw) probably have a certain type of gene (allele) that predisposes them to the adverse effect. Indeed, there is promising research that has identified candidate alleles (search Pubmed or google scholar). We should hope that in the near future, a simple low-cost (genotyping) test will identify those predisposed to ONJ and other side effects. Bisphosphonates will be contraindicated for those people. Meanwhile, thousands of other non-carriers will be able to take the medication safely. Similar applications/screenings with pharmacogenetics are already occurring with many other drugs. The NYT science/health writers should point this out as a possible explanation in their article. It would prevent some of the non-scientific speculation and fear.
An obvious question is what steps can we take to reduce the chance of having osteopenia or osteoporosis in the first place. In that regard I am surprised there was no mention of the importance of vitamin K2, and specifically MK-7 vitamin K2. This vitamin is necessary for getting the osteocalcin protein in an activated (carboxylated) state, which enables calcium to build strong bones. Unfortunately our modern western diet leaves the vast majority of us highly deficient of K2 (it comes primarily from fermented foods). There are now multiple Pharma-grade studies that demonstrate this fact. Vitamink2.org lists links to many of these papers. As is often the case, the challenge is awareness and education.
I wonder how many of these patients now confronting this awful choice might have been able to avoid it in the first place.
I wonder how many of these patients now confronting this awful choice might have been able to avoid it in the first place.
2
I would add that vitamin K2 is found naturally in pasture-raised butter, cheese, and organ meats, incredibly nutrient dense foods which we have been told to avoid for spurious reasons.
My wife was diagnosed with Osteoporosis after a good friend of hers badgered her for over a year into getting a bone scan "to have a baseline just in case" when she was about 51 or 52. She was diagnosed as positive for O, and became deeply depressed (also discovered after the scan that it ran in her family) for a few months before seeking medical advice from a endocrinologist. Happily she was put on Fosamax which she took for ten years. We moved to another state while the jury was still out on how long to continue taking this medication so she had to switch doctors. Around this time, we read in the NYT that it was not recommended to keep taking this medication for extended periods. At Kaiser, she was advised "not to worry about it," when she asked if she should come off the medication. Eventually she switched MDs, and her new one (also Kaiser) consulted with an Endocrinologist and immediately took her off Fosamax. No ill effects other than her bone growth had improved during the extended timeframe. During the course of medication, she also had some invasive dental work including a bone graft - the dentist never mentioned effects related to Fosamax and happily she didn't experience this rare side effect. All in all, the course of medication was positive for her - although time will tell.
1
I'm a middle-aged male who had severe idiopathic osteoporosis - likely genetic. After two years on Forteo I evaluated the risks of bisphosphonates and ignored my Drs advice and have been self-administering strontium citrate. Forteo reversed my osteoporosis and the strontium has continued to improve my bone density - with no additional fractures. Multiple family members have had issues ranging from mild to severe when taking bisphosphonates - and I tend to believe the comments that bisphosphonate side-effects are under-reported. Strontium is widely used in the rest of the world, but since it is a supplement (without patent protection) apparently no U.S. company has taken on the task of getting FDA approval. At least in my case, it has been a viable alternative treatment to bisphosphonates.
37
Have you checked whether the denser bone achieved on strontium supplements has the normal structure of healthy bone? Bone density does not always mean correct structure.
John Virginia: radioactive strontium has been a useful adjunct for treating painful bony metastases in prostate cancer since strontium is taken up by bone. It has been surpassed by radioactive radium, which is more beneficial.
1
Strontium isn't used in the US because it doesn't work. Other countries have allowed it to be marketed as an anabolic (bone building) agent based on faulty and misleading research. It couldn't pass approval in the US. You need to keep a careful eye on your bones, because you are taking a substantial risk in ignoring your Drs advice. If you can't tolerate bisphosphonates, there are other options out there--in particular Prolia. Like bisphosphonates, Prolia inhibits bone loss, though by a completely different mechanism. And I don't work for Amgen, so I have no skin in the Prolia game.
I used Fossmax for 7 years and now I am on Prolia. So far no broken bones or jaw problems.
3
It's interesting that, according to Propublica, several of the quoted physicians have received considerable sums from the pharmaceutical companies. Indeed, Drs. Rosen , Harris have received in excess of $60,000 from them. Dr, Siris--over $30,000. Perhaps this fact might "shade," if not taint the article.
15
It is about time that patients started taking control of their health care and refusing pharma pushing drugs for every disorder, old and newly conceived. Good for the patients. Pharma has sold us a bill of good way too long.
7
It is sad that the very real sins of big Pharma have led to a backlash that has many angry people irrationally rejecting extraordinarily beneficial medications – – and, often, science itself.
Do the practices of big Pharma disgust me (and, BTW, I know more about them than most people for work-related reasons)?
Absolutely.
Would I reject a prescription medication when the science tells me that I am far more likely to avoid medical disaster with it than without it?
Absolutely not.
Why? Because it is my brain and not my anger that drives my healthcare decisions.
The path to changing the practices of big Pharma is through government regulation and lawmaking, not through the irrational sacrifice of one's own health.
Do the practices of big Pharma disgust me (and, BTW, I know more about them than most people for work-related reasons)?
Absolutely.
Would I reject a prescription medication when the science tells me that I am far more likely to avoid medical disaster with it than without it?
Absolutely not.
Why? Because it is my brain and not my anger that drives my healthcare decisions.
The path to changing the practices of big Pharma is through government regulation and lawmaking, not through the irrational sacrifice of one's own health.
NASA experimented with alendronate in the early 2000s for treating osteoporosis in astronauts returning to Earth, but they never adopted it. I'm following their lead.
1
Several years ago after a bone scan I was encourage to take Fosomax I did not. I asked my doctor if she would take it and she said NO. I am now 75 and in excellent health. I refuse to take a bone scan. My treatment is yoga, walking, and supplements. I take no prescription drugs.
3
You have been lucky.
1
My Mom took alendronate for several years before her thighbone "mysteriously" snapped walking out of her bedroom. She continued taking the drug after surgery for another two years when the same thing happened to her hipbone. She was gone one week later.
"You do have to stick with the science." You should also be aware of the risks.
However low.
"You do have to stick with the science." You should also be aware of the risks.
However low.
9
Are those "rotting jaws" a side effect of the medication? or a side effect of osteoporosis itself?
They are a side effect of the drug.
1
Why do we allow our government to waste our money on meaningless trips to outer space and on more wars and killing INSTEAD of demanding that they use our hard earned money for cures for Osteoporosis, Rheumatoid Arthritis, Cancer and all the other hideous diseases?
1
Osteoporosis isn't as common in men, but both of my parents were afflicted. I developed symptoms decades before most people, and at various times have used four different drugs. In spite of an alarming allergic reaction to a drug called Forteo, I decided the risk of being crippled by fragile bones was worse than the prospect of other side effects. I now use Prolia, with moderate success, and my doctor has told me promising research is underway for better medications to help people like me.
16
I too was taking Prolia, with some bone density improvement. Then after two years of treatment, I developed lung cancer. I am not saying Prolix caused it, but because Prolix is immune suppressant, it may have just tipped the boat for me. I mo longer take it. Just nah my fourth spinal fracture :( I need a better treatment.
I am quite fortunate. I was diagnosed with severe osteoporosis and my physician gave me annual infusions. I have received 4 treatments with astonishing results, even my physician was amazed and I have gone two years without further treatment. I am now diagnosed with osteopenia.
The only side effect I had was flu-like symptoms after the first two treatments. I scheduled the treatments on Friday so I would stay home during the weekend.
My advise is follow the course of treatment prescribed by a physician who specializes in treatment of osteoporosis. I am being treated at the Cleveland Clinic.
The only side effect I had was flu-like symptoms after the first two treatments. I scheduled the treatments on Friday so I would stay home during the weekend.
My advise is follow the course of treatment prescribed by a physician who specializes in treatment of osteoporosis. I am being treated at the Cleveland Clinic.
2
I tried fosamax for a year-had gassiness, skin rashes, and nausea, stopped taking it and all these "rare" symptoms subsided and my bone scans came out well. Just reading about the potential side effects "rare" or otherwise makes me think the drug company has a vested interest in trying to make people think they are at risk for not taking a weekly dose of a drug that no one can honestly say is not harmful in the long run.
5
This is a great example of industry driven message that you can miraculously reverse or stabilize osteoporosis just by pushing drugs. DXA scans are borderline sham tests to green light MDs prescribing costly drugs. With long term use, the side effects eventually catch up, and end up tilting the risks and benefits the wrong way.
The only thing that works is prevention from an early age with an active lifestyle and diet rich in plant foods. Sometimes you can't prevent nature/aging. Then, concentrate on fall prevention. It is foolish to think that we can reverse osteoporosis with pills.
Long term medication is not the answer -- ask any patient that has broken thigh bones from those drugs and had to get major surgeries to put in metal rods to fix the damage.
The only thing that works is prevention from an early age with an active lifestyle and diet rich in plant foods. Sometimes you can't prevent nature/aging. Then, concentrate on fall prevention. It is foolish to think that we can reverse osteoporosis with pills.
Long term medication is not the answer -- ask any patient that has broken thigh bones from those drugs and had to get major surgeries to put in metal rods to fix the damage.
4
A diet rich in plant _and_ animal foods provides the nutrients to build and maintain strong bones.
Insurance companies want Bone density studies on middle age and elderly women every two years. if there is evidence of osteopenia , they want something done. not addressing osteopenia / osteoporosis cost them money. morbidity and mortality are also significantly increased. maybe biphosphonates like alendronate may cause fractures. you have to here or care for a patient with these fractures to have some pause. its more difficult to repair a fracture due to biphosphonates. vitamin D 25 hydroxy levels and intact parathyroid hormone levels should be known and addressed if abnormal. calcium supplements about 1.5 grams or less is recommended. calcitriol may be helpful but not compelling in regards to human studies . but is an alternative to biphosphonates or prolix. if you are really worried about fractures and i do think about this.
Maybe I've been "lucky". I had a complete hysterectomy at age 49 and went on estrogen and testosterone replacement. That was twenty years ago and DEXA scans show my bones are about 35 years younger than my now chronological age of 70. I also have less cartilage loss.
Maybe other life style choices have helped too. I am small boned, so when both my grandmothers and all my aunts had broken hips by age 60, I knew I needed to do something. I started working out with weights, heavy ones, at age 30 along with aerobic exercise. My only female relative not have a broken hip was my mother, who went on hormone replacement therapy after a hysterectomy at age 49. There is no history of breast cancer in my family, so my decision was to follow my mother's therapy with some modification.
These days I hike 12 to 15 miles per week on tough mountain trails, ride a bike 75 miles per week, still have a weight lifting routine, do some yoga type exercises, carry heavy loads in a large garden, do a lot of digging. Yes, this takes time, but I can do all this exercise because I do all this exercise. One more thing: I don't live on "one level". I can't skip up and down the stairs anymore, but I still walk them dozens of times a day.
Maybe other life style choices have helped too. I am small boned, so when both my grandmothers and all my aunts had broken hips by age 60, I knew I needed to do something. I started working out with weights, heavy ones, at age 30 along with aerobic exercise. My only female relative not have a broken hip was my mother, who went on hormone replacement therapy after a hysterectomy at age 49. There is no history of breast cancer in my family, so my decision was to follow my mother's therapy with some modification.
These days I hike 12 to 15 miles per week on tough mountain trails, ride a bike 75 miles per week, still have a weight lifting routine, do some yoga type exercises, carry heavy loads in a large garden, do a lot of digging. Yes, this takes time, but I can do all this exercise because I do all this exercise. One more thing: I don't live on "one level". I can't skip up and down the stairs anymore, but I still walk them dozens of times a day.
11
The not living on "one level" is a prescription that serves to keep one healthy and active in so many different areas, A simple thing like going upstairs throughout the day to use the bathroom can help keep you limber,. It helps the joints, the heart and the lungs. Giving up on stairs is one of the worse decisions you can make.
2
the role of weight bearing and exercising in the maintenance of bone health and prevention of osteoporosis must never be forgotten in the prevention of osteoporosis.
19
But, as the article points out, exercise alone is not sufficient to prevent the disease in many women. There is an inherited tendency to osteoporosis that puts many women at risk. All women should have regular bone scans so risk can be appropriately determined.
1
Nowhere in this article does it mention the effects on the esophagus. I, and three of my friends/family members had esophageal burns and, in discussions about this, all of us followed the cardinal rule; don't bend down and remaining standing for at least an hour. Then my GI physician wanted to prescribe a daily prescription drug for reflux which has problems of its own! Not worth it. Besides the science seems faulty in that the criteria used to measure bone density compares the density of elderly people with the bone density of an 20 year old, according to the book "The Myth of Osteoporosis." Of course there could never be a good result using this comparison.
12
Birth control pills can also have deadly side effects. But you don't see anyone refusing to take them because of possible side effects!
7
Oh, yes, you do.
7
I never used hormonal birth control because I did not want the side effects or the risk of the side effects, and the same is true for many women. A friend of mine died from a blood clot in her brain caused by oral contraceptives. So yes, many of us who do our reading figure out other less dangerous ways of not getting pregnant.
1
These drugs increase the density of bone but not it's strength. They merely prevent the removal of the old bone and new bone is squeezed around it.
The answer is to maintain or rebuild bone through scientific application of resistance exercise. Unfortunately physicians are ignorant of resistance application principles and have left this valuable form of therapy in the hands of the gyms and personal trainers.
The answer is to maintain or rebuild bone through scientific application of resistance exercise. Unfortunately physicians are ignorant of resistance application principles and have left this valuable form of therapy in the hands of the gyms and personal trainers.
23
The side effects are not as rare as the article is leading one to believe. My mother took these bone density drugs for years. Eventually, she suffered very serious bone loss in her jaw. It took months, hundreds of dollars, and a great deal of discomfort to correct the situation-and her jaw and teeth were never really the same. Now I am suffering from osteoporosis and am under pressure to take these drugs and am hearing about how "rare" the side effects are. No consideration that I might have a predisposition to this particular "rare" side effect. Just take the pills!
As serious as bone loss can be, this side effect is also potentially very serious and I don't think it is sound medical advice to insist that it is so rare that it won't happen when it clearly DID happen in my family.
As serious as bone loss can be, this side effect is also potentially very serious and I don't think it is sound medical advice to insist that it is so rare that it won't happen when it clearly DID happen in my family.
36
Never ever take a drug that's supposed to improve quality of life that can kill you. That's sort of an unwritten rule. Statistics are always manipulated by unscrupulous profiteers, trust the science?
18
This article fails to cover less drastic treatments that can slow or stop bone loss early, such as calcium supplements and regular exercise. My wife was on and off Fosamax a couple of times, but her bone density has stabilized on those milder -- and far less expensive -- treatments.
21
I had osteopenia then osteoporosis. I take no meds...I'm a nurse. My doc supports me in my decisions, and we work together to find alternate methods. (Never a statin!) I decided to do the work without meds. Walked and jumped. Ate greens and more greens. Did not take calcium, but do take loads of supplements. No milk. Next test, back to osteopenia. Continued on this track. I now have same risk of fracture and anyone else in my age group. Jumping is good for bones. I run in place on my rug. Walk all over. Sure, I may get a fracture, but getting old comes with lots of risks. Medicine comes with more risks.
60
I believe that exercise is the key to good health. However for jumping you also need good knees which somehow don't continue into "older age".
1
I'm one of the 90% who refuse. Not touching the stuff—while the odds may be slim, for the person who experiences the side effects they're 100%. The answer to this is not that MDs should be more aggressive in pushing these drugs, but rather that pharmaceutical companies should come up with something better, and, beyond that, our health non-system as a whole ought to be investing in all manner of non-drug-reliant approaches to encourage and support prevention. Yes, prevention won't solve everything, but we're not doing nearly enough, and insurance incentives in this area are completely counterproductive. In my case, huge benefit has been provided by the superb and widely respected physical therapist, NYU Professor Marilyn Moffat. What we need to do is invest in the Moffats of the world, help them multiply, and realign insurance coverage to make these health care heroes and heroines accessible to all. http://steinhardt.nyu.edu/faculty/Marilyn_Moffat
20
I'm surprised that neither the article itself nor the Readers' Comments mention the treatment I received for osteoporosis and which, by annual bone density testing, has proved effective. This begins with two years of daily injections, self-administered, of an actual bone-growth inducing agent called Forteo. Then, a bi-annual injection of a bone-hardening agent called Prolia.
The treatment is costly and some people don't like to inject themselves but it works. I believe it is the gold standard for osteoporosis.
I am not a doctor, nor do I have any ulterior motive in writing this note. Maybe other people have other experiences with my treatment. Good luck to all with this problem.
The treatment is costly and some people don't like to inject themselves but it works. I believe it is the gold standard for osteoporosis.
I am not a doctor, nor do I have any ulterior motive in writing this note. Maybe other people have other experiences with my treatment. Good luck to all with this problem.
70
Glad they worked for you. Both drugs have =other side effects which I could not tolerate.
5
This article explains how it works https://en.wikipedia.org/wiki/Teriparatide
5
To mpls: Yes, that's true. Which gets back to what the article is about: extremely rare side effects which the one in a hundred (or fewer) need to be aware of but needlessly scare off the remaining ninety-nine (or more).
We have know for years the important role cannabinoids play in bone health: http://www.ncbi.nlm.nih.gov/pubmed/19634029
http://blog.norml.org/tag/osteoporosis/http://blog.norml.org/tag/osteopo...
But research has been hindered because, by god, it's marijuana. Even though are NO life-threatening side effects from cannabis. Thank you, DEA.
http://blog.norml.org/tag/osteoporosis/http://blog.norml.org/tag/osteopo...
But research has been hindered because, by god, it's marijuana. Even though are NO life-threatening side effects from cannabis. Thank you, DEA.
10
To try to inject a sense of proportion to this article, consider:
In a report published in the journal Bone, Volume 46, Supplement 1, March 2010, Pages S16, Abstracts of the IBMS Davos Workshops: Bone Biology & Therapeutics, Davos, Switzerland (March 14-19, 2010)
"ONJ [osteonecrosis of the jaw; what the author calls “rot”] is characterized by a local inflammatory reaction with increased bone resorption and, in the vast majority of cases, follows the trauma of tooth extraction. Therefore, it is difficult to blame ONJ on bone-weakening anti-resorptive effects of long-term treatment with bisphosphonates. Epidemiologic studies indicate that it occurs in fewer than 1/10,000 patients who use bisphosphonates for osteoporosis."
The author, moreover, unfortunately, uses the term “rot” to sensationalize the pathology and does journalism some disservice in this regard.
In a report published in the journal Bone, Volume 46, Supplement 1, March 2010, Pages S16, Abstracts of the IBMS Davos Workshops: Bone Biology & Therapeutics, Davos, Switzerland (March 14-19, 2010)
"ONJ [osteonecrosis of the jaw; what the author calls “rot”] is characterized by a local inflammatory reaction with increased bone resorption and, in the vast majority of cases, follows the trauma of tooth extraction. Therefore, it is difficult to blame ONJ on bone-weakening anti-resorptive effects of long-term treatment with bisphosphonates. Epidemiologic studies indicate that it occurs in fewer than 1/10,000 patients who use bisphosphonates for osteoporosis."
The author, moreover, unfortunately, uses the term “rot” to sensationalize the pathology and does journalism some disservice in this regard.
6
i have a friend who took fosamax and both femurs sponanteously broke. she was part of a class action suit and has received no compensation. she has been in a wheelchair for 6 years. hoping to.someday be able to walk with a walker.
15
Many years ago, I had an amnio. I don't remember the ratio the doctor mentioned but I was one among the thousands who had an adverse effect. You begin to look at ratios in a very different light even when it's 1:40,000.
3
Let me state in the simplest way: It is not about "this or that" drug or treatment. A section of our society (including me) have simply lost trust into the medical system.
The intersection of economics, legal issues, patient expectation, and morality have all contributed to a bloated system that seems to serve foremost in order: insurances companies, drug companies, providers (hospitals and doctors), and last consumers.
Consequence:
Prices in the US double than average of developed countries,
Drug consumption in the US: double than average of developed countries
Life expectancy: lower than average developed countries,
Quality of life: lower than average developed country
Unnecessary medical test and procedures: Sky high
The intersection of economics, legal issues, patient expectation, and morality have all contributed to a bloated system that seems to serve foremost in order: insurances companies, drug companies, providers (hospitals and doctors), and last consumers.
Consequence:
Prices in the US double than average of developed countries,
Drug consumption in the US: double than average of developed countries
Life expectancy: lower than average developed countries,
Quality of life: lower than average developed country
Unnecessary medical test and procedures: Sky high
26
I agree with what you say. One of the factors that cause me not to risk taking these drugs is that I cannot afford to treat any fractures orother side effects. I live on Social Secuirty. I cannot afford to go to the dentist for a routine cleaning--Medicare does not cover dentists. I certainly can't afford a rotting jaw or a fractured thigh. I cannot afford to have my eyes examined or to get new glasses--Medicare does not cover. In fact, I can't afford the $40 copay to see the endocrinologist my PCP advised me to see about my osteoporosis.
2
But do we even know if osteopenia isn't a normal condition of aging which will not necessarily lead to osteoporosis? Do most older people have less dense, but nevertheless strong bones?
We know that osteoporosis is actually a deterioration of the protein matrix of the bone, not a deficiency of mineral deposition.
The medical industry developed drugs that affect mineral deposition in bone, but not the deterioration of the protein matrix of bone, not the disease, osteoporosis. What to do? Claim that that if you have osteopenia you will develop serious, debilitating osteoporosis, and that their drug will prevent that disease by making your bones denser. Physicians who prescribe it can feel they are "doing something"; patients can think they are being treated and the medical industry can make money.
We know that osteoporosis is actually a deterioration of the protein matrix of the bone, not a deficiency of mineral deposition.
The medical industry developed drugs that affect mineral deposition in bone, but not the deterioration of the protein matrix of bone, not the disease, osteoporosis. What to do? Claim that that if you have osteopenia you will develop serious, debilitating osteoporosis, and that their drug will prevent that disease by making your bones denser. Physicians who prescribe it can feel they are "doing something"; patients can think they are being treated and the medical industry can make money.
17
My mother has osteoporosis, and her sisters had it too. My mother has had a knee replacement and several broken bones. Her sisters too. I was diagnosed with osteopenia which has progressed to full blown osteoporosis about 10 years ago. I have a spinal curvature - that complicates things. I have esophageal spasms and GERD too. (I am a mess.) I am 64. Anyway, because of the spasms and GERD, my doctor - who I think is wonderful! -prescribed Prolia injections. So far, so good! I am out of osteoporosis totally! I have 2 Prolia injections per year. Zero side affects so far. And I do one bone density test per year. Prolia is relatively new, so we don't know if I will grow another thumb in a couple of years. But, you take a calculated risk.
Just as an aside...I exercise A LOT. Everyday. About one and a half hours per day. Weights, walking, yoga, swimming - they are not easy. I have pains and do physical therapy too. But I would be in a lot worse shape if I did not do all this stuff, fer sure. Oh, yeah, I have osteoarthritis too. My knee was bothering me some. I went to the orthopedist. He took an MRI. Turns out I am stage 4 - no cartilage under the knee cap. Bone on bone. I asked him why I don't hurt even more?? He says, "You 'fitnessed' your way out of it. Keep up the good work."
Maybe life can be summed up with one question: "how lucky do you feel, Punk?" Thank you, Dirty Harry.
Just as an aside...I exercise A LOT. Everyday. About one and a half hours per day. Weights, walking, yoga, swimming - they are not easy. I have pains and do physical therapy too. But I would be in a lot worse shape if I did not do all this stuff, fer sure. Oh, yeah, I have osteoarthritis too. My knee was bothering me some. I went to the orthopedist. He took an MRI. Turns out I am stage 4 - no cartilage under the knee cap. Bone on bone. I asked him why I don't hurt even more?? He says, "You 'fitnessed' your way out of it. Keep up the good work."
Maybe life can be summed up with one question: "how lucky do you feel, Punk?" Thank you, Dirty Harry.
9
"“You only need to treat 50 people to prevent a fracture."
While this may seem admirable to the treating physician, perhaps not so much to the patient. If people know that there is only a 2% chance that they will benefit from treatment, they may choose not to take advantage of it. And the risk of atypical femur fracture is probably higher than Dr. Rosen states.
While this may seem admirable to the treating physician, perhaps not so much to the patient. If people know that there is only a 2% chance that they will benefit from treatment, they may choose not to take advantage of it. And the risk of atypical femur fracture is probably higher than Dr. Rosen states.
14
Does this mean that 49 people are taking the drug uselessly?
That is exactly what it means!
Even though the side effects are "rare" there is no way I will consider taking these drugs. I'm wondering how many doctors (including those mentioned in the article) get a kick-back for prescribing these drugs. I'm waiting for law firms to advertise their class action law suits against Big Pharma for more of their poisons like these. Wait for it. It's coming. Am I cynical? Damn right I am.
16
Having been in the pharmaceutical industry-at a company that was developing bisphosphonates- when these drugs were being developed, it being abundant clear that although the bisphosphonates may increase bone-it was known 30 years ago that the extra bone formed did not decrease bone fractures and breaks. So if you take a bisphosphonates, there is a 2% chance (maybe) it will prevent a severe bone injury...is it really worth it?
44
I'm glad someone brought this up. I'm a nurse, high risk for osteoporosis but not interested in the drugs, mainly due to the high incidence of GI problems. I heard a while back that the increased bone density hasn't translated into fewer fractures. Is there any newer research that contradicts that finding?
2
Forty years ago, when the drug industry had no interest in these drugs, because they were only approved for the orphan disease Paget's disease of the bone, bisphosphonates were cycled. Simply put, we were taught that osteoblast cells lay down new bone and osteoclasts chew up broken strands and helped remodel bone. These bisphosphonate drugs inhibit the osteoclasts so more bone is being laid down than chewed up, which is what happens to many women when they hit menopause and lose the osteoblast stimulating estrogen. But osteoclasts do housekeeping that is necessary for bone health and we were told to put people on the bisphophonate for 2 months, then off for 1 to allow the osteoclasts to do their job, which is like cleaning loose gravel from potholes, sweeping, and scoring a road before laying down new blacktop. WIthout this you get structurally unsound bone. When the multi-billion dollar osteoporosis market was opened to these drugs, the drug companies only tested continuous use because otherwise they would lose 1/3 of the profit cycling the drug. Of course continuous use is better than nothing, but in the end it causes abnormal bone to form. Make the drug companies test the cycling of these drugs which has not been properly tested for drug company profit reasons.
37
Reading all the material and keeping up with recent reports makes the decision to take or not take a med very difficult. Articles such as this say, basically, trust your doctor. Right, a guy who is so overworked patients now have to track their own records and provide a medication list at every visit and bring along past test results....The doctors go on what the drug companies tell them. The FDA was once a fairly secure guardian (Dr. Kelsey and the FDA kept thalidomide out of the USA when Bayer was selling it everywhere for morning sickness.) But in a mistaken sense of empathy, we neutered the agency by allowing fast tracking of drugs, bypassing trials on compassionate grounds and in other cases allowing poorly designed trials to be submitted. SO patients have to wade through what they can find and dredge up what they can remember from high school chemistry and then cross our fingers that we chose correctly. We don't understand as much as we think we do before we start dumping additional substances into our bodies. I love my allopurinol and my metformin and lisinopril and propranalol (that one they would have to knock me unconscious to take away -it actually prevents my migraines!) I am not so sure about the statin I was recently prescribed but I am giving it a shot.I had a response to the generic that was in no literature and now take the brand (at a significant price difference!) Now I am having typical side effects but are they truly a risk?
6
If your statin side effects include muscle pain, yes, that is truly a risk. Ten percent of statin takers experience this side effect, and it can become permanent and in some cases can cause deterioration of the muscles. Be careful. If you have the pain, ask your doctor about cutting your dose. This worked for my brother. For myself, I am relying on recent studies that show no advantage in taking statins if you haven't had a heart event. That is, using it as a preventative is worthless. Where it is valuable, is for those who have had some kind of event, whether a clogged artery or a heart attack.
1
There's a lot of info about how to build bone through nutritional means and exercise (see Dr. Loren Fishman's research -- there's coverage on in here in the NYT). And YES, it's possible to build it and not just halt loss. I know that not everyone can use these approaches, but doctors should be promoting them more, and people should be researching and implementing them, too. Weight training, balance training (yoga, pilates, etc.) to avoid falls in the first place, wise supplementation and eating ... do it!
9
First, it is every one's absolute right to decide for themselves what chances they wish to take. People should be told the risks and benefits of available drugs, based on the best available information, and make their own decisions. (Vaccination of children against potentially lethal diseases is a more difficult issue, for which government mandates are probably appropriate)
Usually, we will accept low risks of serious complications, if the benefits warrant. After all, virtually all of us are willing to get in automobiles.
But sometimes emotion driven fear triumphs, and even rationale people avoid taking drugs that they probably should take.
Perhaps the most important sentence is this article is "Lawsuits over the rare side effects resulted in large jury awards and drew widespread attention. " The mainstream media, including the Times, very often gives inappropriate attention and to the press releases of the trial lawyers; stirring up hysteria that leads to outrageous and all too often unjustified jury verdicts, and publicity that discourages people from taking drugs that in the vast majority of cases will benefit them.
We should not stop people from making their own choices, even if these choices are sometimes wrong. But the media, including the Times, should be more cautious in considering and reporting the all-too-often self serving hype foisted on the public by a tort bar that is frequently (but not always!) out of control.
Usually, we will accept low risks of serious complications, if the benefits warrant. After all, virtually all of us are willing to get in automobiles.
But sometimes emotion driven fear triumphs, and even rationale people avoid taking drugs that they probably should take.
Perhaps the most important sentence is this article is "Lawsuits over the rare side effects resulted in large jury awards and drew widespread attention. " The mainstream media, including the Times, very often gives inappropriate attention and to the press releases of the trial lawyers; stirring up hysteria that leads to outrageous and all too often unjustified jury verdicts, and publicity that discourages people from taking drugs that in the vast majority of cases will benefit them.
We should not stop people from making their own choices, even if these choices are sometimes wrong. But the media, including the Times, should be more cautious in considering and reporting the all-too-often self serving hype foisted on the public by a tort bar that is frequently (but not always!) out of control.
Whatever happened to diet, weight bearing exercise, and the right combination of nutritional supplements? There have been too many people that we've known with complications or adverse effects from these type of drugs that serve as a cautionary tale. While some of the drugs may effectively build back up bone mass, the strength of that new bone is still questionable.
98
Well. according to one person cited in the article "diet and exercise ... is insufficient to protect them [patients with fragile bones] from fractures."
strength may be questionable for the newer bone. Is its actual structure the same as for healthy bone? That could explain issues with strength.
JeffB Plano, Tx: "the strength of that new bone is still questionable."
Jeff, the proof of the pudding is in the taste. There are fewer fractures with these drugs. The strength of the new bone is adequate provided the vitamin D and calcium levels are therapeutic.
Jeff, the proof of the pudding is in the taste. There are fewer fractures with these drugs. The strength of the new bone is adequate provided the vitamin D and calcium levels are therapeutic.
1
Relentless promotion of diet and exercise? Ah yes -- the bane of a doc's existence.
I promoted my own regimen of the above 40 years ago. And I zealously exclude the bone takers such as smoking, sugar, soft drinks, etc. You don't see osteoporosis in other cultures. I take magnesium and vitamin D and I am on full hormones. My bones are sturdy at 66. My posture is perfect.
Most are not willing to be so high maintenance as me. However, pick your poison. Either lead a very healthy lifestyle or take the medication.
I promoted my own regimen of the above 40 years ago. And I zealously exclude the bone takers such as smoking, sugar, soft drinks, etc. You don't see osteoporosis in other cultures. I take magnesium and vitamin D and I am on full hormones. My bones are sturdy at 66. My posture is perfect.
Most are not willing to be so high maintenance as me. However, pick your poison. Either lead a very healthy lifestyle or take the medication.
16
All osteoporosis drugs carry long lists of side effects that prevent or cause women to not take the drugs-even before you get to the jaw bone death and bone cancer. They can and do cause debilitating joint pain, vertigo, fainting, tinnitus and loose teeth. One (Prolia) even advises no dental work be done while on the drug because of complications.
I have tried and failed to tolerate each and every drug on the market. The Fosomax class of drugs caused such severe joint pain and stiffness that I needed assistance walking (at 50). Genetics "blessed" me with problematic teeth. My dentist and oral surgeon routinely have to extract teeth from women whose teeth have become dangerously loose while on drugs like Reclast. The vertigo, near faints (while driving) and tinnitus from Forteo were an immediate threat to my health and safety. And occurred within an hour of my first injection. I discontinued after a week of "let your body get used to it" which only increased the side effect severity.
I reported the adverse effects to the FDA, manufacturers and physician. The only one who didn't believe me was the physician who immediately tried to put me on yet another drug (Prolia); the one whose medical insert says don't have dental work done while taking the drug.
I read the medical literature. The bone density increases for those who can tolerate these poisons are minimal and not equally distributed (hips much less than femurs, etc.)
I have tried and failed to tolerate each and every drug on the market. The Fosomax class of drugs caused such severe joint pain and stiffness that I needed assistance walking (at 50). Genetics "blessed" me with problematic teeth. My dentist and oral surgeon routinely have to extract teeth from women whose teeth have become dangerously loose while on drugs like Reclast. The vertigo, near faints (while driving) and tinnitus from Forteo were an immediate threat to my health and safety. And occurred within an hour of my first injection. I discontinued after a week of "let your body get used to it" which only increased the side effect severity.
I reported the adverse effects to the FDA, manufacturers and physician. The only one who didn't believe me was the physician who immediately tried to put me on yet another drug (Prolia); the one whose medical insert says don't have dental work done while taking the drug.
I read the medical literature. The bone density increases for those who can tolerate these poisons are minimal and not equally distributed (hips much less than femurs, etc.)
15
No easy answers here
2
I recently had serious reactions to two different drugs to treat atrial fib. In each case, the physician told me that the reactions had nothing to do with the drugs!! I wonder if the published data on bad reactions to drugs to treat Osteoporosis also do not suffer from serious underreporting of side effects.
4
The experts quoted in the article dismiss with a wave of the hand the possibility that exercise and diet may be effective against bone loss. Are there any serious trials or surveys of fracture incidence among women in strenuous occupations? It's easy to blame hormones, but so fewer women than men do physical work or, throughout life, occupy themselves with weight-bearing activities. It is the weight-bearing aspect that is critical, so walking or aerobics may not be of benefit here (although certainly so in cardiovascular and antidepressant effects).
In my 50's I was told by one orthopedist that all women over 50 should be on Fosamax (hideously expensive at the time, so no question of my taking it had I even been so inclined). I took the advice of a second, to have my vitamin D and K levels tested, undergo a bone scan and and add, specifically, "core" exercise to my work routine. My experience is of no statistical use, but surely alternatives to drug therapy should be explored with the same rigor as the drugs themselves? These drugs were aggressively marketed when new, because there was profit in them. But there's money in the alternatives - OUR money.
In my 50's I was told by one orthopedist that all women over 50 should be on Fosamax (hideously expensive at the time, so no question of my taking it had I even been so inclined). I took the advice of a second, to have my vitamin D and K levels tested, undergo a bone scan and and add, specifically, "core" exercise to my work routine. My experience is of no statistical use, but surely alternatives to drug therapy should be explored with the same rigor as the drugs themselves? These drugs were aggressively marketed when new, because there was profit in them. But there's money in the alternatives - OUR money.
7
This is an inspirational story of patients refusing to submit to doctors' orders for prescription drugs that are only made profitable to pharmaceutical companies through HMO rules, and that actually impose a lot of risks to the patient.
Thanks to a venal FDA, the definition of this disease has been gradually broadened to include virtually any living female. Caveat emptor!
Thanks to a venal FDA, the definition of this disease has been gradually broadened to include virtually any living female. Caveat emptor!
11
In med school I was taught to consider osteoporosis as being a pediatric disease that manifests when you're an adult. If we can get young people, particularly women, to build good bone density when they're most likely to lay down good bone matrix then who knows if people would need to take these as much. So if we concentrate on food security (to get calcium and vitamin D) and environmental justice (making sure kids have access to green spaces to play and get sunlight which gives more vitamin D than any supplement), we may be able to do some good prevention. In the meantime for those eligible to take the meds, we should absolutely be highlighting the more common success with the medications than the rarer side effects.
86
As a child and adolescent, I did all that you recommend: drank lots of milk, played outside in the sunshine and was even a bit of an athlete/tomboy. Nevertheless, I still have had osteopenia and then, osteoporosis in middle age and as an elderly woman.
1
Excellent advice.
And meanwhile schools eliminate mandatory Phys Ed to devote time to "core courses" and "career readiness testing" that prepare kids to earn their living sitting in a cubicle for eight+ hours and a vehicle for 3 more, and to get their meals from a driveup window.
If it isn't a conspiracy among the drug industry, the credentialing and college loan industries, it will work out as well for them as if it were.
And meanwhile schools eliminate mandatory Phys Ed to devote time to "core courses" and "career readiness testing" that prepare kids to earn their living sitting in a cubicle for eight+ hours and a vehicle for 3 more, and to get their meals from a driveup window.
If it isn't a conspiracy among the drug industry, the credentialing and college loan industries, it will work out as well for them as if it were.
2
A very important comment. The window of preventive opportunity to increase bone mass is when one is young. It even begins to decrease after around 30, particularly in women. For example, anorexia is an OP medical time-bomb.
When a second tooth was extracted last week, I had to sign off on a lengthy disclaimer regarding the possible dangers related to ever having taken drugs to treat osteoporosis.
I had taken such medication but quit when the pain in my jaw was unendurable. After stopping that once-a-month pill, my jaw stopped hurting. As I read this article, I realized that the severe pain I'd had in my right hand which had been attributed to osteoarthritis hasn't been much of a problem over the past couple of years either.
My last bone scan showed improvement, so I am consistent with calcium and Vitamin D, but have no desire to risk being the 1 in 100,000 with a necrotic jaw.
I had taken such medication but quit when the pain in my jaw was unendurable. After stopping that once-a-month pill, my jaw stopped hurting. As I read this article, I realized that the severe pain I'd had in my right hand which had been attributed to osteoarthritis hasn't been much of a problem over the past couple of years either.
My last bone scan showed improvement, so I am consistent with calcium and Vitamin D, but have no desire to risk being the 1 in 100,000 with a necrotic jaw.
6
I was diagnosed with osteoporosis around 15 years ago (I am now 70) and for reasons stated in many of these comments chose not to take medications. I have had one bad fall that resulted in a dislocated shoulder, but no broken bones. My mother and grandmother lived into their 90s with no fractures, and while they were never tested for osteoporosis, they had the same northern european small-boned build that I have. I will be cautious and maintain my very active lifestyle, including yoga with emphasis on balance, and a lot of walking, plus a good healthy diet (and no caffeine - sorry!). I take no supplements and I have more energy than many people half my age.
8
The NYT has covered the ground-breaking research by Dr. Loren Fishman proving that a simple 15-minute yoga routine three or four times a week is as effective as these meds at halting bone loss and even slightly reversing it in some cases.
Also, the real time to pay attention to bone health and vitality is in adolescence when we are growing the skeleton that will take us into old age. I'm grateful for all those years of cheerleading in junior and high school. At 70, I have robust bone health that was encouraged 55 years ago with all those bounding leaps and routines.
Also, the real time to pay attention to bone health and vitality is in adolescence when we are growing the skeleton that will take us into old age. I'm grateful for all those years of cheerleading in junior and high school. At 70, I have robust bone health that was encouraged 55 years ago with all those bounding leaps and routines.
4
I have a friend who went from osteopenia to osteoporosis in three years despite doing an hour or more of yoga 43 to 5 times a week during that period, so that isn't the answer either.
1
What about addressing the causes of those falls? Weak muscles, poor balance, slumping posture (kyphosis), and mind/body disconnect...
1
opioid usage
As an Oral and Maxillofacial surgeon, I see the terrible problems with these type of drugs in my practice weekly. We were the specialty that raised the red flag when we started to see a rise in these dead bone patients soon after MD's started writing prescriptions and telling their patient's that they need to be on these drugs "forever". Over the past 14 years, intense research has shown that these drugs don't have to be taken longer than 3-5 years, then they can be stopped. The 1/2 life of these drugs is over a 11 years! That is the years it takes for 1/2 of the drug's effects to be gone. These drugs give you "old bone" because they stop the body's natural bone "cleaning osteoclasts" from working. That leaves one with old brittle bone. I've operated on these patients and their bone is like chalk, it might look good on the bone density scan's but it is not stronger bone. We know that eating natural foods (plant based), daily movement with lifting to improve muscle mass will keep your bone's strong. These drugs are dangerous long term for osteoporosis and should only be taken for short periods of time. Physicians need to read the extensive research Oral and Maxillofacial Surgery has done on this subject.
398
Thank you for sharing this information.
2
Excellent comment, very informative.
2
Glad that there is at least this one reference to the patient taking charge, changing diet, using weight bearing exercise. A bit shocking that in 2016 people have not been doing their own research on the faulty metrics used and the life-style changes they must make to lead healthier lives. Our unhealthy bodies are a source of profit to big pharma. Watch over yourselves and do research on healthier bones with sources that do not profit from your poor health. Shattered femurs from these drugs are just not rare. I personally have two close friends who experienced these. And they'd been on the drugs for years. I should not be surprised to see this biased article in the Times, right?
3
Just scanning through the comments here shows the vast misunderstanding of both osteoporosis and the medications prescribed for them. Bisphosphonates are actually fairly safe and effective drugs. GI issues are real, certainly, and some people can't tolerate the drugs. OP is a serious condition: Those little old ladies that keep shrinking? Their spinal column fracturing and compressing. Hip fracture: mortality within one year around 30%. Also, despite the misleading ads, bisphosphonates do not build bone. Bone is constantly being remodeled. Old bone is degraded by osteoclasts and rebuilt by osteoblasts. This is important to keep bone in good condition. BPs inhibit the degradation, which in OP patients has become too active compared to formation. There is only one drug in the US approved that actually builds bone: Forteo, though it is a daily injection and appropriate only for severe osteoporosis. I know a little bit about this because I have spent years in pharma doing drug discovery in attempts to identify new, better treatments. Oh, and the company I work for does not make any bisphosphonate, so I have no incentive to suggest that they are good drugs. Comments about vitamins and collagen below just show that the commentator doesn't understand bone biology. Standard, age-related OP is not a collagen problem. Osteogenesis imperfecta, on the other hand, is.
128
I hope anyone who is being advised to take Forteo will do some research. Read the manufacturer's literature and watch the DVD. Read online comments by people who took/take the drug. Etc.
3
Forteo, however, has been associated with bone cancers in lab rats.
2
Forteo. Yes, I was on it for about two years (the recommendations at the time were that one should not be on it for longer). The daily injections were a pain, but my condition improved from osteoporotic to osteopenic, so I was pleased with the results. I was then put on alendronate for about 5 years, but again at the time the recommendations were that it should not be taken indefinitely and that after 5 years not much additional benefit would be obtained. Bone scans since have been stable.
2
I know it's not always about me, but my company (www.quizzify.com) helps employees select treatment options through education. We have done this exact same analysis on osteoarthritis drugs, and our conclusions align much more with most of the comments than with the essay. The "number needed to treat" to prevent a fracture is something like 50. (We think it's even higher.) But the serious side effects added together -- meaning the number of people who will be harmed significantly with these drugs -- rival that 2% who will benefit.
Further, there needs to be a line drawn people people who are at VERY HIGH risk for a fracture, such as frail elderly who have already had one, vs. women put on this drug because a bone scan (or two or three bone scans) saw evidence of osteoarthritis. The risks far outweigh the benefits in the latter group. My suspicion is that the decline in prescriptions is disproportionately in that latter group, as well it should be.
Further, there needs to be a line drawn people people who are at VERY HIGH risk for a fracture, such as frail elderly who have already had one, vs. women put on this drug because a bone scan (or two or three bone scans) saw evidence of osteoarthritis. The risks far outweigh the benefits in the latter group. My suspicion is that the decline in prescriptions is disproportionately in that latter group, as well it should be.
9
No mention of the myth that dairy is good for your bones? Nothing on the importance of weight-bearing exercise and strength training as you get older? Big Pharma has got to love you.
7
Here in the Home of the Brave we are sheltering millions of the most chicken-hearted people who ever lived.
Don't believe the hype!
Don't believe the hype!
1
I have had many patients decline taking bisphosphanates , because their dentists told them not to.
5
My wife had a spontaneous femur break from fosamax when trying to stand up. She was home alone at the time, but fortunately was able to crawl to a phone for help. What a horror! And unbelievably, her rheumatologist wanted to put her back on a similar drug. Not only that, but the class action for hip fractures is still tied-up in court and is being fought quite heavily by the drug company, so no compensation for this awful side effect. The FDA should do its job and take the stuff off the market.
4
So, the age group and sex that plays state lotteries the MOST doesn't have the best grasp of odds? shocker.
I'm sure that this is how the drug industry would like us to see things. Any reason for only interviewing pro-drug people for this article?
2
This country is definitely prescription drug happy. Doctors quick to prescribe some prescription drug because they think patients want drugs; patients quick to follow doctors orders or who have "no time" (or the job or income) to be incapacitated.
Factor this in: We are only 1 of 2 countries that allows prescription drugs to be directly advertised to the citizenry. The other country is New Zealand.
Now ask why the overwhelming majority of countries do not allow direct-to-consumer prescription drug advertising. Doctors in these countries wholeheartedly support the advertising ban, as do many doctors in this country. They will tell you lots of reasons why.
Want some fun? Compare the drug ads in medical journals with ads for the same drug in the commercial media, then identify the different kinds of associations and appeals made to each audience.
When we did this with nursing and medical students where I taught, they were pretty amazed at the kinds of psychological manipulations employed to get doctors or consumers to be "favorably disposed" to one competitive drug over another.
I never forgot Steve Martin's hilarious article "Side Effects" in the New Yorker (4/13/1998). Here is a reprint I found on the Internet: http://www.dr-bob.org/babble/social/20060324/msgs/626555.html
Factor this in: We are only 1 of 2 countries that allows prescription drugs to be directly advertised to the citizenry. The other country is New Zealand.
Now ask why the overwhelming majority of countries do not allow direct-to-consumer prescription drug advertising. Doctors in these countries wholeheartedly support the advertising ban, as do many doctors in this country. They will tell you lots of reasons why.
Want some fun? Compare the drug ads in medical journals with ads for the same drug in the commercial media, then identify the different kinds of associations and appeals made to each audience.
When we did this with nursing and medical students where I taught, they were pretty amazed at the kinds of psychological manipulations employed to get doctors or consumers to be "favorably disposed" to one competitive drug over another.
I never forgot Steve Martin's hilarious article "Side Effects" in the New Yorker (4/13/1998). Here is a reprint I found on the Internet: http://www.dr-bob.org/babble/social/20060324/msgs/626555.html
8
The problem with this class of drugs is that the original studies only covered usage for 5 years. Doctors tend to keep one on a drug with no exit date. I know women who have been on one of these drugs for more than 10 years. The drug's effect plateau and then decline. And above all, drug effects are on an individual basis; statistics may point to a certain percentage with effects but if it is you, you listen to your body and quit the offending drug, no matter what it is.
3
My physician had me on evista for ostopenia; two years later, she said I could stop taking the drug. Apparently, the statistical standards of diagnosis had changed and I didn't have the disease after all. This was during the 2008-2012 period cited by the article. Could this be a contributing reason that prescriptions are down?
3
Five physicians recommended Fosamax to me and I said no every time. Now several years later at age 67 my osteoporosis scores have improved. Had I been taking the drugs I suppose the benefit would be attributed to the drugs.
12
I have osteopenia. I've had these drugs pushed at me for over a decade and refused. I had a bone scan last month and it was compared to one from 2008. My hips improved. My lumbar spine got a tiny bit worse but the radiologist said the change was "insignificant." I asked to have my Vitamin D level tested after the 2008 results and it was in the "severe deficiency" range. I take large doses of D3 year round to keep me in the normal range. I walk more and try to fit more activity into each day. My endocrinologist checks my D levels twice a year. I know it's only my personal experience but I'm glad I said no to the bone drugs and continue to say no.
1
One can see the problems with personal testimonial and citation of data without adequate referencing reflected in the comments here. Ms. Kolata's column makes a very important point, but it will be an uphill battle with the public. The psychology at play is well-known. There is an expected preponderance of people with negative opinions or experiences on these sorts of discussion boards.
Dr. Rosen is a section editor for UpToDate, and one has free access to the section on bisphosphonates for osteoporosis there: http://www.uptodate.com/contents/the-use-of-bisphosphonates-in-postmenop... .
No consensus statement will be perfect and recommendations will change--that happens for many, perhaps most, medications. That linked summary page also discusses eventually discontinuing the meds in certain people who are at lower risk. Data are also appearing for people to cycle the drug at less frequent intervals before coming off completely.
The problems with fear are not only confined to patients and dentists, and certainly not only for this drug. All it takes is for a newly released drug to cause a rare but severe reaction in the hands of a physician and they also can be prone to disproportionate fear of the medication.
Dr. Rosen is a section editor for UpToDate, and one has free access to the section on bisphosphonates for osteoporosis there: http://www.uptodate.com/contents/the-use-of-bisphosphonates-in-postmenop... .
No consensus statement will be perfect and recommendations will change--that happens for many, perhaps most, medications. That linked summary page also discusses eventually discontinuing the meds in certain people who are at lower risk. Data are also appearing for people to cycle the drug at less frequent intervals before coming off completely.
The problems with fear are not only confined to patients and dentists, and certainly not only for this drug. All it takes is for a newly released drug to cause a rare but severe reaction in the hands of a physician and they also can be prone to disproportionate fear of the medication.
I had a friend that had blackened pieces of jaw bone fall out........and really? That I knew someone was that rare? I urged her to take action against the company - and the company was ready for it. Had a booklet on how to receive compensation for her issues, but like many that are older, she was unable to handle the legal mechanism set up for such things with no transportation to lawyers and in pain so much that her life activity was severely limited. I don't believe the statistics you present in this article, because I believe that numbers can always be interpreted the way it suits ones argument. A doctor from Kaser Permanente would not give her any of the bone fragments that she requested....and also discouraged her from taking legal action. It was a medical nightmare. And I never felt the same about Sally Field after this happened by the way...
162
You bring up valid points. How many broken bones are written off as inevitable because of age?
Here's an example of industry attitude: my 92 year old Mom was prescribed a statin last year and called the drug company to ask about the stroke risk. The woman who answered the phone asked how old Mom was and then quipped "well, you're likely to have a stroke anyway even if you don't take our drug!". Mom hung up the phone and threw away the prescription.
And then doctors have the gall to wonder why people are declining drugs.
Here's an example of industry attitude: my 92 year old Mom was prescribed a statin last year and called the drug company to ask about the stroke risk. The woman who answered the phone asked how old Mom was and then quipped "well, you're likely to have a stroke anyway even if you don't take our drug!". Mom hung up the phone and threw away the prescription.
And then doctors have the gall to wonder why people are declining drugs.
2
Your report sounds very second hand, at best.
It is unethical for any physician to not provide the patient with their record, their tissues if requested for other labs to test, etc.
Sounds like unsubstantiated fear mongering.
It is unethical for any physician to not provide the patient with their record, their tissues if requested for other labs to test, etc.
Sounds like unsubstantiated fear mongering.
1
I am sorry to hear about your friends jaw. Was she given the risks involved in taking that particular medicine? If not , than that is grounds to sue. But all medicine, be it surgeries or drugs, involve risks that need to be discussed before proceeding. Unless a doctor has willingly or out of negligence put a patient at risk, they are not responsible for the chance horrible response. Perhaps if our medical care were more universal and people could get the help they needed, then they wouldn't feel the need to sue.
1
It's amazing. This article sounds more like an ad for these drugs than a discussion of the science or the real risks of these drugs pose. Additionally why should anyone trust "science" generated or publicized by manufacturers whose only goal is to make the most money they can. Patients aren't stupid which is what this article is Really saying. Patients are not stupid or irrationally fearful.
Are patients really supposed to accept FDA rulings on safety after seeing and reading the reports that surface, and I do mean surface, after struggles telling the truth about powerful and expensive drugs or procedures that were supposed to be miracles. The article talks about one set of side effects but carefully avoids many others that themselves require other expensive drugs to deal with. A typical corproate strategy...loudly proclaiming those side effects are rare while carefully and purposefully ignoring a whole host of others!
There is a deep cynicism about the health care industry and that cynicism is well placed. Perhaps doctors who blame their patients should consider cleaning their own house and working toward a more honest health care industry.
Are patients really supposed to accept FDA rulings on safety after seeing and reading the reports that surface, and I do mean surface, after struggles telling the truth about powerful and expensive drugs or procedures that were supposed to be miracles. The article talks about one set of side effects but carefully avoids many others that themselves require other expensive drugs to deal with. A typical corproate strategy...loudly proclaiming those side effects are rare while carefully and purposefully ignoring a whole host of others!
There is a deep cynicism about the health care industry and that cynicism is well placed. Perhaps doctors who blame their patients should consider cleaning their own house and working toward a more honest health care industry.
13
I know two people who have had complications from these drugs. My mother in law suffered the thigh bone snap. When she went to the hospital, they kept saying after you fell and your bone broke and she said no. My bone broke and then I fell. I wonder how many people had their narratives changed by hospitals and doctors. These tend to be elderly people and I bet reporting of this injury is low. The surgeries and anesthesia required for surgery set her back quite a bit. She was never the same afterwards. I have a friend who suffered the bone necrosis and she is relatively young, under 60.
So I'm wondering if there is some under reporting of these incidents. And I feel that if I know people who had these side effects -- I really don't get out much -- they don't seem to be "rare" to me. Maybe instead of moaning about Americans not taking these nasty medicines they should work on designing better drugs. Lately it seems every medicine being pushed on me has ugly and scary side effects. I'm truly reluctant to take almost any med these days.
So I'm wondering if there is some under reporting of these incidents. And I feel that if I know people who had these side effects -- I really don't get out much -- they don't seem to be "rare" to me. Maybe instead of moaning about Americans not taking these nasty medicines they should work on designing better drugs. Lately it seems every medicine being pushed on me has ugly and scary side effects. I'm truly reluctant to take almost any med these days.
14
Enlarged parathyroid will pull calcium from both your bones and your teeth. You can not see an enlarged parathyroid because it is behind your thyroid. My enlarged parathyroid was 20 times larger than the normal sunflower seed size--mine was more olive sized----and yet you could not see anything on my neck.
Earlier this year, I was diagnosed with osteopenia after a bone density test--I was told to take calcium and D supplements after this diagnosis. An ultrasound of my thyroid followed by a 24 hour blood and urine test indicated I had a very enlarged parathyroid and that my blood and urine were teeming with calcium--this calcium had been pulled from my bones and teeth by my enlarged parathyroid. Long term, large volumes of calcium in your blood and urine will destroy your kidney function and result in great bone loss. Six months after the removal of the parathyroid--I will get another bone density test on the same machine with the same technician. If you have been diagnosed with osteopenia or osteoporosis based a bone scan--follow through with the above mentioned tests to see if there is a cause behind the diagnosis.
Earlier this year, I was diagnosed with osteopenia after a bone density test--I was told to take calcium and D supplements after this diagnosis. An ultrasound of my thyroid followed by a 24 hour blood and urine test indicated I had a very enlarged parathyroid and that my blood and urine were teeming with calcium--this calcium had been pulled from my bones and teeth by my enlarged parathyroid. Long term, large volumes of calcium in your blood and urine will destroy your kidney function and result in great bone loss. Six months after the removal of the parathyroid--I will get another bone density test on the same machine with the same technician. If you have been diagnosed with osteopenia or osteoporosis based a bone scan--follow through with the above mentioned tests to see if there is a cause behind the diagnosis.
7
Pharma has zero credibility. That's what unmitigated greed will get you. The medical profession bears great responsibility for this as well. Real health care is not a profit-making enterprise, but a public good. How many more have to suffer and die before we start treating it as such?
9
This article is insulting to patients, implying that they are irrational and blind to science. Give us all a little credit. Given the fact that we are talking about older women here, there is an implied sexism as well. Those fearful old ladies who won't take their medicine!
The public has good reason to doubt the pharmaceutical companies. For too long, doctors have been their puppets, so it is hard to trust them as well. A logical outcome is widespread loss of trust, which is what you have here.
It is naive to think it just comes down to the science-- as if "the science" is ever pure and objective. Patients have to navigate a maze to figure out what is truly in their best interest. We cannot simply listen to our doctors or trust Big Pharma, or take the latest study at face value. This article could have been written from an entirely different perspective, which would have made it interesting rather than insulting.
The public has good reason to doubt the pharmaceutical companies. For too long, doctors have been their puppets, so it is hard to trust them as well. A logical outcome is widespread loss of trust, which is what you have here.
It is naive to think it just comes down to the science-- as if "the science" is ever pure and objective. Patients have to navigate a maze to figure out what is truly in their best interest. We cannot simply listen to our doctors or trust Big Pharma, or take the latest study at face value. This article could have been written from an entirely different perspective, which would have made it interesting rather than insulting.
10
I am among those patients who will not take the drugs. I did when first diagnosed and immediately had untoward effects, nausea, GERD, increased musculoskeletal pain and impaired kidney function. I even had one of the IV treatments. Then I questioned why I had osteoporosis because I certainly did not fit the 'profile' of a typical patient. My internist listened and so did my rheumatologist and I was eventually diagnosed with celiac disease and the associated vitamin and mineral deficiencies due to malabsorbtion. This halted the progression and slowly improved bone density by eliminating gluten and taking (large, prescribed) doses of critical supplements. There is no way I will take any of these drugs; my body cannot tolerate 'simple' meds such as ibuprofen much less these. I would not tell someone else not to; that's up to them for sure, but they must be sure the risks outweigh the benefits.
7
Let's look at how these drugs work and why they eventually will cause everyone who takes them to have "spontaneous" fractures. Your bones are constantly building new bone and breaking down old bone and removing it, everyday. This drug stops the removal of old bone. When you look at a bone density exam it will look like the bone is denser but actually it looks that way because the old bone is still there. At some point, usually around 5 years, there is not enough room for new bone growth because the old bone is in the way. "Spontaneous" fracture! Really? No, it's because instead of building new bone a weak bone is being developed. It's a lousy drug with other well known side effects also.
10
I was put on Actonel right after it came out- It gave me severe flu like symptoms for several days. I stuck it out for one year, then decided quality was better than quantity of life at that point. The meds they are pushing have many side effects, that are not life threatening but life ruining, and that has to be taken into account.
8
I'm sure I'm not alone in saying that even the most minor of medical interventions I and family members have experienced have had a negative side-- enough to write a book. Why shouldn't we be extremely cautious?
3
"You only need to treat 50 people to prevent a fracture." Only 50? ONLY 49 take the drug and its risks for no benefit? That is considered good? By whom? The drug companies?
8
I am among those who refuse those drugs. The reason: I don't trust Big Pharma and I no longer trust Government to oversee Big Pharma.
It's bone broth and a good diet for me.
It's bone broth and a good diet for me.
7
A Dr. Lee, now deceased, has a website, that argues that wild yam cream, which provides transdermal progesterone can help with osteoporosis. He talks about natural hormone therapy for other things, also. I find it rather convincing, and am researching it further.
3
I'd like to know what is involved with a bone density scan... How are the results evaluated? Will different specialists look at the same bone density scan and make different observations from it?
Isn't it true that strong bones are promoted by frequent short exposure of skin to sunlight? Isn't there is an increase in osteoporosis resulting from slender women of Northern European heritage always avoiding the sun? One easy way to get sun without wrinkles is to roll up your pants for 15 to 20 minutes. Or wear clothing that is not SPF 50. I'm not saying to overdue it, but I've also heard that daily sun exposure promotes healthy sleeping and improves attitude.
Why do slender women get osteoporosis more than women who eat more?
Isn't it true that strong bones are promoted by frequent short exposure of skin to sunlight? Isn't there is an increase in osteoporosis resulting from slender women of Northern European heritage always avoiding the sun? One easy way to get sun without wrinkles is to roll up your pants for 15 to 20 minutes. Or wear clothing that is not SPF 50. I'm not saying to overdue it, but I've also heard that daily sun exposure promotes healthy sleeping and improves attitude.
Why do slender women get osteoporosis more than women who eat more?
4
Our son had a rare condition called polyostetic fibrous dysplasia, which caused his bones to break. He was part of the clinical trial testing bisphosphonates for treating this rare disease. While the drug did not prevent his death from other conditions, it got him out of a wheelchair. Sometimes, these drugs are worth the risk.
53
Sometimes they are but your son had a serious disease. These osteoporosis drugs are being protective like candy to almost every woman. Osteopenia is a new diagnosis that results in advice to take drugs tha cause brittle bones! But big profits.
I glad these drugs helped your sone but big Pharma knows that won't fill their pockets so everyone needs to take them. That's the problem!
I glad these drugs helped your sone but big Pharma knows that won't fill their pockets so everyone needs to take them. That's the problem!
1
I feel extremely lucky at the age of 64 to still be able to run, walk up and down 3 flights of steps numerous times daily, bike and attend exercise classes. At age 49, my hip was broken when I fell in a skiing accident. The femoral neck shattered requiring 3 titanium pins. I had no idea I had osteoporosis. Knowing nothing about the condition, and being told by the surgeon that I needed to see an endocrinologist I was put on actonel for 7 years only. I was then put I prolia, which is an injection twice a year. I have had subsequent falls on ice and a mishap walking thru the woods. But, I am a woman, and seemingly the only one speaking up for these drugs. Being part of the statistics and someone who has taken these drugs, I can honestly state that the benefits cannot even begin to be decribed.
7
This is just one of many possible examples of allowing drug manufacturing companies to advertise directly to consumers. The demand for specific drugs increased exponentially once the FCC changed the rules and allowed drug companies to advertise directly to consumers. Even when half the ad or more is a litany of potential problems coming from using the drug being advertised the companies must be making money or they'd stop paying for the ads. BTW, drug companies spend far more money on that advertising than they do on research.
7
I am appalled that the NY Times published such a one-sided, pro-Big Pharma article. It reads like an advertisement- like they paid you to print it. I spent many years as a Big Pharma research scientist until I reached a level of management where some goings-on were visible. Finally I quit and found a new, lower pay, lesser notoriety career, and am proud of it.
I know NYT is well aware of how Big Pharma lies to people, especially Americans. You know most side-effect data is buried. When they need a good result, they keep experimenting until they get what they want, then they throw out the rest of the data. Side effects are given a disease name and another drug sold to treat it, forming an endless chain of prescriptions. And you know there's no way a physician can keep up with all the new drugs they're bombarded with and rely on pharmaceutical sales reps to keep them informed. It goes on and on, and I know you know it all.
I will read the Nee York Times with a skepticism I have never felt before.
I know NYT is well aware of how Big Pharma lies to people, especially Americans. You know most side-effect data is buried. When they need a good result, they keep experimenting until they get what they want, then they throw out the rest of the data. Side effects are given a disease name and another drug sold to treat it, forming an endless chain of prescriptions. And you know there's no way a physician can keep up with all the new drugs they're bombarded with and rely on pharmaceutical sales reps to keep them informed. It goes on and on, and I know you know it all.
I will read the Nee York Times with a skepticism I have never felt before.
25
Good for you for getting out, Ex-BigPharmaSrScientist. I'm sure you are sleeping better at night.
I often wonder how those in the BigPharma executive suites sleep at all.
I often wonder how those in the BigPharma executive suites sleep at all.
1
I'm curious as to why another alternative--denosumab, brand name Prolia--is not mentioned here?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0009849/?report=details#sid...
Read its list of side effects including the warning not to have dental work done while on it.
Read its list of side effects including the warning not to have dental work done while on it.
The same thing is going on with statins, and many of my patients cite "Dr. Oz" as being the source of their misinformation about statins. I've had more than one patient come out of the hospital for their first heart attack still refusing to take a statin.
I have more easily been able to allay patients' fears about bisphosphonates than about statins.
I have more easily been able to allay patients' fears about bisphosphonates than about statins.
1
The benefits of statins have been wildly hyped and the serious side effects under-reported. I would not hesitate to fire a doctor who tried to prescribe statins.
There are countless other reasons not to take Fosamax, guys. This is a scare story. And there are other ways to prevent osteoporosis. Just doing Yoga for one or working out with Dumbbells and ankle weights. Fosamax doesn't create living bone.
It creates stiff, dead bone which is not orthopedic ally useful. Doctors took forever to realize added estrogen causes great cancer and now they're taking forever to realize the truth about Fosamax(cleverly disguised in this article wth abscientif sounding(but probably written by an English major) name. Do not make this like the vaccination controversy. It is not.
It creates stiff, dead bone which is not orthopedic ally useful. Doctors took forever to realize added estrogen causes great cancer and now they're taking forever to realize the truth about Fosamax(cleverly disguised in this article wth abscientif sounding(but probably written by an English major) name. Do not make this like the vaccination controversy. It is not.
9
Your therapies didn't work for me.
Rare side effects? Maybe not so rare. In my 40's I was diagnosed with osteopenia which is a reduction of bone mass that could lead to more severe osteoporosis. My doctor prescribed Fosamax (Alendronate Sodium), and I took it routinely for about 5 years. When my teeth began to loosen I stopped taking the drug. I decided to take my chances rather than continue down that road.
149
My wife had a similar experience. Apparently the NYT doesn't know any of the brand names. FOSAMAX is bad.
2
...or given the large reader base of the NYT and the fact that people who have had negative experiences are generally more likely to comment than those with satisfactory experiences, it is possible that you are indeed one of the small subset of people who do not respond well to these drugs. The quote by Dr. Rosen pretty much sums it up from an epidemiological perspective: “You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture.” I am sorry for your negative experience but it is (a) possible that it stemmed from something other than the drug and (b) inaccurate to state that due to a singular personal experience something is not rare within the larger population. Finally, I would like to note that osteopenia and osteoporosis are both documented causes of tooth instability and tooth loss directly. It is possible that your symptoms were due to the disease and not the medication used to treat it.
1
I had a similar experience and had mysterious periodontal surgery. With proper diet and lot of exercise, there is no further loss of bone for me. Osteoporosis is a disease, while "osteopenia" is an invented term for measuring bone density based upon median readings from young women. The medical community needs to take bone density readings much earlier in women's lives so they know what is normal for these women. Then, we would know who has a risk and who actually needs drug and who doesn't.
1
Your article does not mention that research has shown that the efficacy of bisphosphonates in reducing the incidence of fractures declines to statistical insignificance after five years of use. So a woman who is prescribed these drugs and takes them faithfully will still need different and probably stronger drugs after that period. With bisphosphonates being prescribed for diagnoses of osteopenia (another invented disease), many women may find themselves timed out when they develop actual osteoporosis. Also, the relationship between increases in bone density shown on scans and reduction in fractures is tenuous, as skeletal tissue formed as a result of medications may not have the same properties as original bone.
16
Americans take n more drugs than any other nation yet, they are like 33rd in the world in life expectancy.
Nowhere in the article does it talk about the drug companies profits which are , obviously, lessened when people don't take their 'nasty drugs'; that's the real hidden motive behind the article.
Nowhere in the article does it talk about the drug companies profits which are , obviously, lessened when people don't take their 'nasty drugs'; that's the real hidden motive behind the article.
9
Three people I know took Fosomax or a similar "bone builder": One lost teeth on one side and had jaw surgery; another had teeth falling out (though he'd never had a cavity) and a hip broke while he was walking; the third stopped taking them because of terrible stomach aches.
10
My MIL took it for quite some time, pressured by her physician. Within a year, she could hardly move her jaw, meaning could hardly eat. While it took a few months of not taking Fosomax, her jaw recovered enough to where she can chew.
Note that studies showing negatives often are not published. Sort of that unsaid rule in the world: don't upset a potential funder.
Sad state of "science" these days.
Note that studies showing negatives often are not published. Sort of that unsaid rule in the world: don't upset a potential funder.
Sad state of "science" these days.
1
I'm surprised Forteo, a drug I'm taking for my osteoporosis wasn't mentioned. After multiple fractures, most recently a broken pelvis (way painful) and broken forearm (from the same minor fall), I was prescribed Forteo. I feel Forteo was the miracle drug promoting complete healing of both my fractures. I'm out of the wheel chair, done with the walker and the cane, walking several miles a day, working out in the gym, back to about the same level of activity I enjoyed 20 years ago, in my 50's. Taking Forteo now for 5+ months wondering what my bone scan will show next year, after 17 months.
4
Something interesting that seems to buried here: Doctors do not seem to have the time to tailor drug regimens for people who suffer side effects. They seem to use clinical trial data, from a for-profit company, as a replacement for the experience of the patient in front of them. Clinical trials after have extremely strict protocols where drug administration is monitored by medical professionals. In real life you probably are not taking your medicines at the same times everyday. Sometimes dosages are even tailored for the patient's weight. The trial population might be all men or racially homogenous. Yet the results from that trial are extrapolated onto the population more generally.
Odds are if someone is not following a drug regimen, they probably think the side-effects that they experiencing from drug are worse than thing you're trying to cure. People lose weight more generally as they get older. Odds are their kidneys and liver are not filtering substances out as fast, so serum concentrations of the drug might be higher than expected.
As someone who has been underweight, I find that I have to go out of my way to find "regular" strength medication, low dose meds, or sometimes children style liquid medication to get the dose that is therapeutically sufficient, and that doesn't cause side-effects.
Maybe doctors need to ask themselves one more question when prescribing, does my patient have anything in common with the people who experienced adverse reactions?
Odds are if someone is not following a drug regimen, they probably think the side-effects that they experiencing from drug are worse than thing you're trying to cure. People lose weight more generally as they get older. Odds are their kidneys and liver are not filtering substances out as fast, so serum concentrations of the drug might be higher than expected.
As someone who has been underweight, I find that I have to go out of my way to find "regular" strength medication, low dose meds, or sometimes children style liquid medication to get the dose that is therapeutically sufficient, and that doesn't cause side-effects.
Maybe doctors need to ask themselves one more question when prescribing, does my patient have anything in common with the people who experienced adverse reactions?
12
One of the reasons that many people distrust these drugs is explained by one of the specialists quoted in the article:
"Dr. Ethel S. Siris, an osteoporosis expert at Columbia, [said] that with the drugs off patent, there is no longer an aggressive advertising push to make people aware of them."
There is such a vast advertizing industry devoted to convincing people to take a wide variety of drugs for a wide variety of conditions that intelligent people are apt to distrust both the claims and the statistics. When billions of dollars in profits are at stake there is enormous incentive for companies to "lie with statistics," which is not hard to do. For example, if an industry funds 500 studies and only publishes or promotes the results of the 50 most favorable studies, they can easily mask the magnitude or frequency of side-effects.
The doctor-specialists quoted in the article might be well-meaning and much better informed than the average patient, but even the specialists are dependent for much of their information on a "research" industry that is dominated by the drug company profit machines.
An article that treats patients as ignorant because they weigh the risks differently than the specialists is not necessarily good journalism.
"Dr. Ethel S. Siris, an osteoporosis expert at Columbia, [said] that with the drugs off patent, there is no longer an aggressive advertising push to make people aware of them."
There is such a vast advertizing industry devoted to convincing people to take a wide variety of drugs for a wide variety of conditions that intelligent people are apt to distrust both the claims and the statistics. When billions of dollars in profits are at stake there is enormous incentive for companies to "lie with statistics," which is not hard to do. For example, if an industry funds 500 studies and only publishes or promotes the results of the 50 most favorable studies, they can easily mask the magnitude or frequency of side-effects.
The doctor-specialists quoted in the article might be well-meaning and much better informed than the average patient, but even the specialists are dependent for much of their information on a "research" industry that is dominated by the drug company profit machines.
An article that treats patients as ignorant because they weigh the risks differently than the specialists is not necessarily good journalism.
9
When Dr Siris was treating osteoporosis in the 1990's, her staff were aggressively trying to recruit me for her research. This was done despite the fact that my consult appt was nine months away and I was only seeking a consult for a fracture.
For some doctors it is all about the research ( and the funding that goes along with it).
For some doctors it is all about the research ( and the funding that goes along with it).
Testosterone pellet implants, for women as well as men, increase bone density manifold--without side effects. (No, in the small doses needed, they won't grow facial hair or cause voice deepening in women.) They also offer a host of other health-giving benefits including cardio- and breast cancer protection. (See hormonebalance.org .) But since there long-acting supplements are produced not by Big Pharma, but by compounding pharmacies lacking political clout, they tend to have escaped the attention of the medical establishment.
4
In France and the EU in general, doctors, dentists, pharmacists and mid-wives have a legal obligation to immediately report to the medical authorities any adverse effects to drug treatments in their patients. The protocol is clear and there is nothing voluntary about it. That this is not the case in the US, and forces patients (and doctors) to make decisions about whether to take a drug or not often based on incomplete information, speaks volumes about the power of Big Pharma in the U.S.
25
Bones are in a constant state of renewal—old bone resorbed, new bone formed. The fundamental problem with this class of drugs is its underlying mechanism—slowing the rate of resorption. The result may be denser bone, but it is at the expense of bone quality.
Whether fractures occur likely depends on bother sort and quality, but decisions to treat are based only on density. The reason: only density can be measured. And only density has a drug treatment.
Technician and machine variability, as well as certain artifacts, e.g., scans are 2-D projections of 3-D, render frame size a confounding variable.
The DEXA scan and bisphosphonates created a new disease classification—osteopenia, a new income stream for doctors and an additional rationale for practicing defensive medicine.
An Ivy-educated internist friend told me recently that doctors treating osteoporosis don't know what they are doing.
Whether fractures occur likely depends on bother sort and quality, but decisions to treat are based only on density. The reason: only density can be measured. And only density has a drug treatment.
Technician and machine variability, as well as certain artifacts, e.g., scans are 2-D projections of 3-D, render frame size a confounding variable.
The DEXA scan and bisphosphonates created a new disease classification—osteopenia, a new income stream for doctors and an additional rationale for practicing defensive medicine.
An Ivy-educated internist friend told me recently that doctors treating osteoporosis don't know what they are doing.
17
Sorry for the iPhone spellcheck typo. Should read:
Whether fractures occur likely depends on both density and quality, but decision to treat is based only on density.
Whether fractures occur likely depends on both density and quality, but decision to treat is based only on density.
2
My mother-in-law was one of those so-called "rare" people who had 2 atypical femur fractures. She had been on Fosamax for 5 years when the first one happened (she was getting out of a car and her leg snapped). Her doctors kept her on it for another 4, then her other snapped as she was starting to go up the stairs. There was no reason at all for her to be on the drug in the first place, except that she was getting older. The reason that the headline calls these "rare" is that many go unreported, because, well, I fell and broke my hip, or I fell and broke my leg. What happens is the leg breaks, and then you fall. Her life was completely changed.
18
The American Society for Bone and Mineral Research and the National Osteoporosis Foundation are representatives of the manufacturers of medications for osteoporosis. Their recommendations need to be taken cautiously since they benefit a the companies that make these drugs. Your article is essentially an unpaid endorsement for these drug companies.
Osteoporosis needs to be tackled early on through prevention. More walking, Tai Chi, yoga, more sunlight, and more green leafy vegetables. Just like the people around the world who have some of the lowest rates of osteoporosis.
Osteoporosis needs to be tackled early on through prevention. More walking, Tai Chi, yoga, more sunlight, and more green leafy vegetables. Just like the people around the world who have some of the lowest rates of osteoporosis.
46
Physicians are being taught to treat people based on research demonstrating beneficial outcomes. They are being dissuaded to resort to therapies based on anecdotes.
I find the comment sections on articles on medical therapies contain a litany of anecdotal experiences. If a comment might persuade someone being treated based on evidence to change their therapy to something based on anecdote and suffers a negative effect, it would be a tragedy.
Rather than censor comments on health issues, I think the New York Times consider eliminating comments on health related information.
on health matters discussing matters of
I find the comment sections on articles on medical therapies contain a litany of anecdotal experiences. If a comment might persuade someone being treated based on evidence to change their therapy to something based on anecdote and suffers a negative effect, it would be a tragedy.
Rather than censor comments on health issues, I think the New York Times consider eliminating comments on health related information.
on health matters discussing matters of
5
Indeed, we should simply all do what those Authoritative Voices say. We mere cattle cannot hope to best their infinite wisdom.
What's that? Moo? Did you say "moo"?
Yes, yes you did.
What's that? Moo? Did you say "moo"?
Yes, yes you did.
1
I find commenters' personal anecdotes to be very useful. I've done a great deal of research on health subjects of interest to me using NYT comments as starting points. All a reader must do is be aware of the inevitable bias of the commenters. But readers saying "I, or somebody I know, took this drug and this is what happened" can be helpful.
In this case it's the comments about dentists. I already knew about joint pain (my own anecdote: a friend of mine, diagnosed with osteopenia, took one of these drugs and suffered unbearable joint pain. Her doctor told her to forget the drugs and do Yoga instead. Take that for what it's worth.) Exploring what dentists have discovered in treating patients on these drugs is a valid avenue of research. It makes me wonder, of course, if medical doctors have bothered to do that.
As for me, numbers say it all. Treating fifty people to prevent one fracture is simply not compelling enough for me to take these drugs. Also, although I can accept the small risk of the "frightening" side effects, I cannot put aside the all too common side effects of joint pain and reflux, either of which would impact my fitness regimen. What would the medical community rather I do--take a pill or work out?
Anyway, shoulder on, fellow commenters, my own personal New York Times Research Team! What a deal--you work for free!
In this case it's the comments about dentists. I already knew about joint pain (my own anecdote: a friend of mine, diagnosed with osteopenia, took one of these drugs and suffered unbearable joint pain. Her doctor told her to forget the drugs and do Yoga instead. Take that for what it's worth.) Exploring what dentists have discovered in treating patients on these drugs is a valid avenue of research. It makes me wonder, of course, if medical doctors have bothered to do that.
As for me, numbers say it all. Treating fifty people to prevent one fracture is simply not compelling enough for me to take these drugs. Also, although I can accept the small risk of the "frightening" side effects, I cannot put aside the all too common side effects of joint pain and reflux, either of which would impact my fitness regimen. What would the medical community rather I do--take a pill or work out?
Anyway, shoulder on, fellow commenters, my own personal New York Times Research Team! What a deal--you work for free!
2
90% refusal/rejection of these chemicals is not a small matter. It's a grass roots rejection of the entire science, and in turn a de-facto rejection of an entire medical specialty.
7
"It's a grass roots rejection of the entire science"
No, it is not a rejection of "science". It is a profound distrust of the pharma industry, with good reason.
Pharma companies have paid billions in fines as settlements for fraudulent marketing practices, and apparently treat these fines as a cost of doing business.
http://projects.propublica.org/graphics/bigpharma
No, it is not a rejection of "science". It is a profound distrust of the pharma industry, with good reason.
Pharma companies have paid billions in fines as settlements for fraudulent marketing practices, and apparently treat these fines as a cost of doing business.
http://projects.propublica.org/graphics/bigpharma
3
OK, here is the benefit of biphosphonates based on the published literature:
If you are a post-menopausal female who has never had a fracture, the benefit of taking medication to prevent fracture is zero, as in bupkis, nada, zilch. The results of your bone density test matter not at all
If you are a post-menopausal female who has had at least one previous osteoporosis related fracture, by taking meds, 1 in 17 women will have a fracture prevented over the subsequent 3 years. This means that 16 out of 17 will have no benefit.
The typical cost of an Actonel copay is around $80 a month. Half of all retirees live on less than $1800 a month. The average Medicare recipient already spends $520 a month on medications alone.
After food, rent, and the rest of your medications, who of you will spend the last of your disposable income on a 1 in 17 bet that the medication will do you any good?
If you are a post-menopausal female who has never had a fracture, the benefit of taking medication to prevent fracture is zero, as in bupkis, nada, zilch. The results of your bone density test matter not at all
If you are a post-menopausal female who has had at least one previous osteoporosis related fracture, by taking meds, 1 in 17 women will have a fracture prevented over the subsequent 3 years. This means that 16 out of 17 will have no benefit.
The typical cost of an Actonel copay is around $80 a month. Half of all retirees live on less than $1800 a month. The average Medicare recipient already spends $520 a month on medications alone.
After food, rent, and the rest of your medications, who of you will spend the last of your disposable income on a 1 in 17 bet that the medication will do you any good?
21
To those who are not taking the medication: most probably the RIGHT decision. You just never know what these very strong medications will do to you, especially if you are old and frail and with many systems that are worn down.
Doctors get paid more to prescribe and treat than to monitor. Drug companies make lots of money selling medications, especially new ones under patent. This puts the motivations in exactly the wrong places.
This is not to say that doctors prescribing medicines are evil. They are just trying to help.
Strong modern medicines, however, especially when administered to frail old people, pack quite a wallop.
Side effects are woefully under-reported, in my personal experience and my experience watching my well-insured parents cope with doctors and the many medicines they prescribed. Making a report (which I believe is not compensated) is time consuming. Doctors excuse their failure to report by speculating that maybe the bad reaction was due to something particular with the patient. Even if a report is made, I suspect that many are discounted for this, that or the other reason.
--Big Pharma, ever eager to sell its wares, probably encourages the under-reporting of side effects (they would call it "scrubbing" for scientific accuracy) and sponsors "research" that ends up peppering the scientific literature with all kinds of biased junk.
WHAT A MESS!
Doctors get paid more to prescribe and treat than to monitor. Drug companies make lots of money selling medications, especially new ones under patent. This puts the motivations in exactly the wrong places.
This is not to say that doctors prescribing medicines are evil. They are just trying to help.
Strong modern medicines, however, especially when administered to frail old people, pack quite a wallop.
Side effects are woefully under-reported, in my personal experience and my experience watching my well-insured parents cope with doctors and the many medicines they prescribed. Making a report (which I believe is not compensated) is time consuming. Doctors excuse their failure to report by speculating that maybe the bad reaction was due to something particular with the patient. Even if a report is made, I suspect that many are discounted for this, that or the other reason.
--Big Pharma, ever eager to sell its wares, probably encourages the under-reporting of side effects (they would call it "scrubbing" for scientific accuracy) and sponsors "research" that ends up peppering the scientific literature with all kinds of biased junk.
WHAT A MESS!
12
Unless faced with a catastrophic illness, I won't take any new drugs. Experience has taught me that it's not worth the risk nor the money. I don't know what the pharma industry is thinking, but they are too often callous in marketing (why sell medicine via advertising like corn flakes or crackers) and careless re: efficacy and long term effects. And too often, the reactions of individual patients to medicines differ greatly and are not well understood by doctors (or pharma for that matter). And the cost...which is just plain abusive.
16
My 62 year old mother-in-law's thigh bone broke when she was on this medication in 2012. She went to a rehabilitation facility and in under two weeks contracted C-Difficile at the facility and died suddenly. She had a 4 month old grandson at the time. All so unavoidable and tragic. I am thankful there is more awareness now and the use of these medications has drastically decreased.
10
Here in Boston, after alarming readings of bone density, about a decade ago, many specialists at the bone clinic recommended these medications as prevention. Some years ago, this change into a whisper about how truly terrible diseases such as osteonecrosis were being observed in the clinics --and how lives otherwise normal were destroyed. Now, these same doctors do not recommend these medications, whisper about how osteopenia became abnormal as soon as these medications were marketed.
Now these very same doctors recoil in horror after mentioning these drugs, indicating how some of the most awful diseases (such as rotting of the jaw, observed in the Radium Girls in the 20s) were returning --and how these diseases were much, much terrible than even a fractured spine or hip... life changing, disfiguring, painful without measure, and caused by medicine. And no, they do not think that these are "exceedingly rare" nor worth the risk. Caveat Emptor.
Now these very same doctors recoil in horror after mentioning these drugs, indicating how some of the most awful diseases (such as rotting of the jaw, observed in the Radium Girls in the 20s) were returning --and how these diseases were much, much terrible than even a fractured spine or hip... life changing, disfiguring, painful without measure, and caused by medicine. And no, they do not think that these are "exceedingly rare" nor worth the risk. Caveat Emptor.
14
I was immediately suspicious when thousands (millions?) of women stopped taking estrogen and the drug companies were desperate for a drug that every woman would take for the rest of her life.
21
This is what happens when there is an overreaction against hormone replacement therapy, which protects bones. Yes, HRT has its downside in that it increases risks for venous thrombosis and/or stroke, but these are normal problems that the medical establishment can deal with better than the peculiar effects of bisphosphonates that block bone turnover.
2
Reading through the comments on this article is disheartening. I thought NYT readers would be more enlightened than the public at large, but given the paranoia and multitude of "well my own observations are better than any large scale, double blind, peer reviewed scientific study," what hope does society have?
The kicker is, the rest of us have to pay for the anti-science ignorance when hip fracture rates soar in the future.
The kicker is, the rest of us have to pay for the anti-science ignorance when hip fracture rates soar in the future.
4
Love the comments, although I disagree with some of them, of course. I've been on alendronate for 4 years to prevent bone loss due to continuous prednisone use. Omepazole to protect the stomach. I like the commenters who say hit the gym, as that is what I do. I disagree strongly with the notion that you can't trust your doctor, and that the science is made up, and that it's all a big conspiracy. Osteopoenia is real; you need to make a decision on how to combat it, one based on science and statistics, and not on some phony baloney malpractice suit.
1
Let's rename this article: Fearing Pharmaceutical Companies' Track Record for Hiding Adverse Affects of Blockbuster Medications, Millions Take Bisphosphonate Makers'Assurance of Safety with a Grain of Salt.
That's better.
Now let's discuss the way these drugs work: they disrupt the normal bone remodeling process by preventing old bone from breaking down. They don't do anything to build new bone. They just allow the old bone to accumulate. There must not be any money in building up bone.
That's better.
Now let's discuss the way these drugs work: they disrupt the normal bone remodeling process by preventing old bone from breaking down. They don't do anything to build new bone. They just allow the old bone to accumulate. There must not be any money in building up bone.
17
Every day another Big Pharma drug is revealed by Science to be useless for its intended purpose (See this recent articlehttp://well.blogs.nytimes.com/2016/05/25/opioids-often-ineffective-for-l..., or whose additional/side affects outweigh benefits. So, while I can't say the latter is true of the osteoporosis drug, it IS true that most of the time their other options, such as diet and Chinese Herbal Medicine. Chinese Medicine has been treating osteoporosis as well as broken bones and weak tendons and bones since the dawn of writing. If I myself had Osteoporosis I would look into diet and herb alternatives that might be safer and more effective than pharmaceutical drugs. Let's be honest, no drug is without side effects. www.bodymindwellnesscenter.com
2
Here's my experience with one osteoporosis drug (oral):
When initially prescribing the osteoporosis drug & discussing side-effects, etc. with me, my MALE gyn said flatly: "Your generation [baby boomers] are guinea pigs for all these drugs. We'll know much more about the true risks, benefits, and side effects in 25 years - and it will be from seeing what happens to all of you."
My gyn recommended the drug; I took it for 5 years. Then my gyn said I should stop, so I stopped. Several months after stopping, I fractured my foot in the most innocuous of circumstances - and fractured it badly enough that I could not put weight on it for nearly 5 months.
So: Correlation? Causality? Coincidence? Bad luck? I can't prove anything, but it sure felt like I was paying the price for having messed with the normal process of bone turnover in my body.
The doctors treating the fractured foot ALL asked if I'd been on an osteoporosis drug & none seemed surprised that I'd just finished 5 years of taking one. They'd seen it before.
That said, I have enough training in human physiology and pathology to know that it is IMPOSSIBLE to interfere with ONE major bodily function (like bone formation) without ALSO affecting a lot of other things. (And similarly with statins: You mess with cholesterol regulation at your own risk, because cholesterol is critical to many body functions.)
Every woman who is recommended this category of drug has to make her own decision.
When initially prescribing the osteoporosis drug & discussing side-effects, etc. with me, my MALE gyn said flatly: "Your generation [baby boomers] are guinea pigs for all these drugs. We'll know much more about the true risks, benefits, and side effects in 25 years - and it will be from seeing what happens to all of you."
My gyn recommended the drug; I took it for 5 years. Then my gyn said I should stop, so I stopped. Several months after stopping, I fractured my foot in the most innocuous of circumstances - and fractured it badly enough that I could not put weight on it for nearly 5 months.
So: Correlation? Causality? Coincidence? Bad luck? I can't prove anything, but it sure felt like I was paying the price for having messed with the normal process of bone turnover in my body.
The doctors treating the fractured foot ALL asked if I'd been on an osteoporosis drug & none seemed surprised that I'd just finished 5 years of taking one. They'd seen it before.
That said, I have enough training in human physiology and pathology to know that it is IMPOSSIBLE to interfere with ONE major bodily function (like bone formation) without ALSO affecting a lot of other things. (And similarly with statins: You mess with cholesterol regulation at your own risk, because cholesterol is critical to many body functions.)
Every woman who is recommended this category of drug has to make her own decision.
17
In the article, immediately after the statement, "Estimates are that 10 to 40 in 100,000 osteoporosis patients taking the drugs...have sustained broken thighbone.", which means that as many as one in 2500 suffer this side effect, comes this whopper from Dr. Clifford J. Rosen, "...you need to treat 40,000 people to see an atypical fracture."
Gee, I wonder why so many patients assume they are being lied to? With physicians pushing the drugs by stating that the risk of side effects are less than one-sixteenth what they are estimated to be, I will also refuse to trust our pharmaceutical-medical-industrial complex.
Gee, I wonder why so many patients assume they are being lied to? With physicians pushing the drugs by stating that the risk of side effects are less than one-sixteenth what they are estimated to be, I will also refuse to trust our pharmaceutical-medical-industrial complex.
5
There are alternatives to these drugs, including strontium (ranelate salt approved in Europe but is chosen for patentability and high-price-ability; Sr-citrate available here cheap, OTC), GuSuiBu (Drynaria, a Chinese herb), avoiding an acidifying diet or taking an alkalinizing supplement such as potassium citrate. There's more. And this article doesn't mention the G.I. side-effects.
3
I expect a better written, more informative, article than this from the NYTs. The study mentioned was from 2012 and was only about Oral Bisphosphonates- like Fosamax, Boniva, Actonel, and Reclast. What about writing about the different types of drug treatments for osteoporosis to include SERMS and well as parathyroid hormones, calcitonin, and HRT. How about explaining how some drug therapies build up bones while others do not. More interestingly, maybe touch on the massive profits that market watchers were expecting from Amgen and UCB with Romosozumab (an anti-sclerostin).
I'd like to see more informative, in depth, well researched articles in health. With shallow articles like this one, comments tend towards personal stories and end up sounding like gossip. Please bring back the Science to the Health pages, do some research, dig into the facts, return to journalism.
I'd like to see more informative, in depth, well researched articles in health. With shallow articles like this one, comments tend towards personal stories and end up sounding like gossip. Please bring back the Science to the Health pages, do some research, dig into the facts, return to journalism.
30
This is one of those diseases where you're really better off being plus-size. Osteoporosis likes victims who are birdlike.
95
Not true. My mother was always chubby (a wonderful, soft mama to hug!) and she was diagnosed with osteoporosis. So, don't think you can be protected that way.
2
Yes, having a larger frame, and carrying a few extra pounds will help shield a person from osteoporosis. Medium and lighter boned people, those with lower overall extra body fat (as opposed to 'birdlike') to muscle ratio are more prone to developing the condition. From all I've read, one of the most important things parents can do is to educate their teen and young adult children about the importance of including calcium rich food in their diets. Unless I've misunderstood the most recent data, females are able to build new bone until the age of 24 and males until 26. Laying down a good foundation of bone through diet and physical activity at those ages can help protect people in later life. http://childrensmd.org/browse-by-age-group/teens-and-calcium-8-things-to...
1
Makes me appreciate my solid thighs and squishy spare tire!
I have to say, I admire the current crop of people over 65 for their willingness to try so many new drugs.
Invent a new drug and this co-hort will take it, at least until the side effects become widely known.
It's very pioneering of them and I am thankful for how their experiences--good and bad--will inform the creation of new drugs and new treatments.
We owe a debt to people like Mrs. Canipe who are willing to try new things and to share their experiences.
Thank you, Mrs. Canipe!
Invent a new drug and this co-hort will take it, at least until the side effects become widely known.
It's very pioneering of them and I am thankful for how their experiences--good and bad--will inform the creation of new drugs and new treatments.
We owe a debt to people like Mrs. Canipe who are willing to try new things and to share their experiences.
Thank you, Mrs. Canipe!
3
Sometimes you just have to go for it. Any drugs, even your normal over the counter pain pills can have side effects. I know a broken jaw and especially a thigh must be awful to deal with but go with the odds. I had a knee replacement 2 years ago and still can't walk without a walker. I would have been better off going to Kevorkian, but whatcha gonna do?
1
No wonder people are avoiding those drugs. Learning to eat the Japanese superfood natto is less alarming by far. It's the major source of K7 that one can eat and studies suggest it has a role in the better bone density of older Japanese. Available in the frozen food section of your Asian grocer; eat with rice, soy sauce, dijon and green onions. I sometimes have mine with a small glass of beer. Do not stir it *ever*, contrary to popular practise over there. And of course, do some basic weight lifting.
1
What they doctors aren't telling you, and this is really important, is that these drugs do indeed grow bone, but the kind of bone they grow is defective and not solid. Although it looks substantial on the x-rays, it's quite fragile, and basically these drugs destroys healthy bone.
2
Here is a link to an article giving overview of side effects. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704135/
It also discusses that no-one really knows how long one even needs to take these meds. As typically prescribed continuously for 5 yrs or more, it's striking to know that the drugs bind tightly to bone matrix for years and perhaps indefinitely, so it's likely that much more limited dosing would give equivalent result (for much less profit). Most dentists and oral surgeons will not perform extractions or other procedures on patients on these drugs, because injury is a well-known trigger of osteonecrosis of the jaw in these patients; careful dental care should be undertaken before beginning these drugs. Also, the increased bone induced by these drugs is not architecturally the same as normal bone, so it's unclear how much benefit is derived in terms of fracture reduction. Individual patients should make their own decisions.
It also discusses that no-one really knows how long one even needs to take these meds. As typically prescribed continuously for 5 yrs or more, it's striking to know that the drugs bind tightly to bone matrix for years and perhaps indefinitely, so it's likely that much more limited dosing would give equivalent result (for much less profit). Most dentists and oral surgeons will not perform extractions or other procedures on patients on these drugs, because injury is a well-known trigger of osteonecrosis of the jaw in these patients; careful dental care should be undertaken before beginning these drugs. Also, the increased bone induced by these drugs is not architecturally the same as normal bone, so it's unclear how much benefit is derived in terms of fracture reduction. Individual patients should make their own decisions.
42
So much ignorance is reflected in the comments as well as the occasional anecdote of bad advice. The risk:benefit ratio with these drugs greatly favors the benefits. Some caveats do apply and physicians must be aware of them and discuss potential adverse effects with patients. People die of anaphylactic reactions to common antibiotics. If you don't want to use them, it's your choice. Exercise, diet and vitamins are fine supplements but will not suffice for those with advanced osteoporosis. Osteopenia is not a made-up condition looking for a drug. It is a real precursor to osteoporosis.
I am a physician in practice for forty years and the fight against ignorance is ongoing. Patients will often wish they had followed the advice of a physician after irreversible damage is done and that is a shame.
I am a physician in practice for forty years and the fight against ignorance is ongoing. Patients will often wish they had followed the advice of a physician after irreversible damage is done and that is a shame.
18
Help us out here doctor, so we can understand your logic.
If the article correctly states the statistics, then only 1 in 50 patients taking the drug will benefit (ie avoid a fracture), while the other 49 will expose themselves to both common and rare side effects with no benefit. The absolute benefit ratio is far far less than that of antibiotics, so your comparison to the risk of taking the antibiotics seems inappropriate.
To me there is a very large ethical question for doctors in prescribing these low benefit ratio drugs. Are you"doing no harm" to the 49 people who won't benefit?
But perhaps there are other benefits to these drugs that are not mentioned in the article. If so could you tell us what they are?
If the article correctly states the statistics, then only 1 in 50 patients taking the drug will benefit (ie avoid a fracture), while the other 49 will expose themselves to both common and rare side effects with no benefit. The absolute benefit ratio is far far less than that of antibiotics, so your comparison to the risk of taking the antibiotics seems inappropriate.
To me there is a very large ethical question for doctors in prescribing these low benefit ratio drugs. Are you"doing no harm" to the 49 people who won't benefit?
But perhaps there are other benefits to these drugs that are not mentioned in the article. If so could you tell us what they are?
I wonder if you could tell me if these drugs have better results than adequate vitamin D levels, K2 supplementation and exercise...and by what percentages?
I have used three of the drugs mentioned and have had no problems with side-effects. They did increase my bone density to the point that I did not feel further medication was warranted. Calcium pills plus vitamin D have been sufficient to contain the tiger.
The dental side effects are broader than the article suggests. When I attended osteoporosis class at a hospital's physio department, one of the attendees had experienced failure of all her tooth implants.
The dental side effects are broader than the article suggests. When I attended osteoporosis class at a hospital's physio department, one of the attendees had experienced failure of all her tooth implants.
16
Yes. The dental side effects are much broader than suggested. Just ask the oral surgeons and dental practitioners at larger clinics and you will discover that they frequently (near daily basis) are forced to extract teeth so loosened by these drugs that they are near falling out.
1
I teach various art classes to around 200 mostly older retired women in my area. A very large percentage have been on the anti osteo drugs and yes their bones are now denser, but over a dozen have reported unexpected, very serious shattering fractures because their bones have also become become glass brittle. These are not rare cases. Any more than the large number also reporting tendon and nerve damage after taking the common antibiotic CIPRO.
It's not that the cases from either drugs are rare. It's because their doctors treating these patients don't associate the symptoms with drugs that they have been told are safe and so repeatedly seek and diagnose other causes. Hence massive under reporting of the statistics and tragic lowering of the published risks.
It's not that the cases from either drugs are rare. It's because their doctors treating these patients don't associate the symptoms with drugs that they have been told are safe and so repeatedly seek and diagnose other causes. Hence massive under reporting of the statistics and tragic lowering of the published risks.
131
It's the mechanics of how the bone is grown. Their 'denser' bones are made of weaker stuff. So the scan just shows the density but doesn't show the quality. The result is more brittle bone. Period.
1
I fractured my femur and a density scan showed lower bond density than was desirable. I took the drug for a year, after that time I mentioned it to my GP, asking what to do now, he pointed out the difference in density achieved by the drug was tiny, and the lit confirmed that. My answer is calcium, weight loss and regular exercise.
20
If you can, exercize, exercize, exercize. Start young while you can. Don't wait until you're already feeble. But, even then, do something, anything to move. Our society is, by and large, the most physically inert group of people in history.
Assessing the magnitude of a risk should take into account both its frequency and seriousness. In the case of drugs, I can tolerate a 1 in 10 to 1 in 100 risk of a minor side effect, but I think twice about a 1 in 100,00 risk of serious damage to my jawbone causing severe pain and interfering with eating. I'm a retired physician with osteoporosis and have chosen not to take these drugs. I have accepted the risk of bone fractures, and tread carefully.
Let's hope reduced demand will stimulate research into safer drugs.
Let's hope reduced demand will stimulate research into safer drugs.
75
Not mentioned is that dentists have taken part in this this fear mongering. I have seen over and over again dentists who blame any failed implant or dental procedure on these medications. They have frightened many of my patients from starting osteoporosis treatments or from continuing the treatments. The dentists, at least in my community, overwhelmingly do not agree with the literature that osteonecrosis is a rare side effect. They apparently base this entirely on their own anecdotal experiences. Yet they appear to completely disregard the risks of osteoporosis and the potential risk reduction that these medications offer.
9
As a retired periodontist who has seen the results of ONJ (osteonecrosis of the jaw), you should be commending those Dentists who have taken a proper medical history and had the good sense to contact you ( the physician) prior to initiating treatment.
All patients who are considering drug treatment for Osteoporosis should seek a consultation and treatment with a PERIODONTIST before taking any class of Osteoporosis medication. Physicians should be explaining the ONJ risks to their patients and initiating these referrals to Periodontists
All patients who are considering drug treatment for Osteoporosis should seek a consultation and treatment with a PERIODONTIST before taking any class of Osteoporosis medication. Physicians should be explaining the ONJ risks to their patients and initiating these referrals to Periodontists
4
My wife has taken Alendronate weekly for five years. The routine is always the same on "bone pill" day: no coffee, food or meds prior to taking the capsule with two full glasses of water; then a 30 minute wait afterwards and no lying down. It requires discipline to forgo that first cup of coffee or tea while waiting for the kitchen timer. However, her last three bone density exams have shown no osteoporosis progression. With her Zumba classes, hiking and gardening interests unimpeded into her seventies, the risk of losing all of that to osteoporosis versus the minuscule risk of taking Alendronate is an easy decision.
22
I am very confused and conflicted about these drugs. I've been diagnosed with osteopenia, and have been on and off bone building meds for years. Always skeptical, I went off the last med because it gave me heartburn. I was also on HRT (going to the lowest dose) for debilitating hot flashes that never ended (despite finishing menopause) until I received a diagnosis of breast cancer- DCIS, stage 0. (Don't get me started on that diagnosis--or is it a diagnosis? The new findings came out just as I was undergoing my lumpectomy and radiation. A discussion for another day).
My oncologist gave me the choice of Tamoxofin or Anestrozole. I chose Anestrozole but a side effect is brittle bones. So, my internist put me back on a bone building med. I took Atelvia for a year with no side effects (up side is it is taken after eating). However, it is not covered by my insurance and I was paying a hefty sum. My doctor changed my prescription to Boniva which I have not taken yet.
Six weeks ago I fell and broke my wrist requiring surgery. In falling the way I did, I'm sure my wrist would have broken regardless of my taking the Ned's. Did it help lessen the break? I really doubt it. I would love to not take the Boniva (or any bone building meds) but not taking it scares me since the cancer drug affects the bones. I feel caught in a situation that has no satisfactory solution, and I'm sure I'm not the only one.
O
My oncologist gave me the choice of Tamoxofin or Anestrozole. I chose Anestrozole but a side effect is brittle bones. So, my internist put me back on a bone building med. I took Atelvia for a year with no side effects (up side is it is taken after eating). However, it is not covered by my insurance and I was paying a hefty sum. My doctor changed my prescription to Boniva which I have not taken yet.
Six weeks ago I fell and broke my wrist requiring surgery. In falling the way I did, I'm sure my wrist would have broken regardless of my taking the Ned's. Did it help lessen the break? I really doubt it. I would love to not take the Boniva (or any bone building meds) but not taking it scares me since the cancer drug affects the bones. I feel caught in a situation that has no satisfactory solution, and I'm sure I'm not the only one.
O
22
Whether osteopenia needs treatment is questionable. Read up on it--it's hype by the pharmaceutical industry is part of the reason people are suspicious of the drugs used to treat osteoporosis.
2
This article leaves out the most important data: what exactly is the increase in osteoporosis related injuries/fractures? It's deftly implied, but there's no data! Have they gone up at all? Perhaps they've actually gone down and this is a non-issue. Perhaps the people choosing to not take the drugs are finding better non-drug alternatives (vitamin d, k2, boron, magnesium, etc).
Just because the percentage of people taking pharmaceutical drugs for a condition goes down doesn't mean the condition it treats goes up. Unless that data is there, this is meaningless. Of course the drug industry is in a panic and calling for "urgent" action, they've lost 50% of their profits on these drugs. That's the only real data this article presents, other than attempting to scare women into buying these drugs despite the horrifying side effects.
Until pharmaceutical drugs can prove that they're more effective than alternative safe options (where is that data?), no one in their right mind would take the risks that these drugs present. Bravo to women finding better alternatives, I know they make up at least part of that 50%.
Just because the percentage of people taking pharmaceutical drugs for a condition goes down doesn't mean the condition it treats goes up. Unless that data is there, this is meaningless. Of course the drug industry is in a panic and calling for "urgent" action, they've lost 50% of their profits on these drugs. That's the only real data this article presents, other than attempting to scare women into buying these drugs despite the horrifying side effects.
Until pharmaceutical drugs can prove that they're more effective than alternative safe options (where is that data?), no one in their right mind would take the risks that these drugs present. Bravo to women finding better alternatives, I know they make up at least part of that 50%.
92
In my family of three sisters with osteoporosis, two of whom were treated with bisphosphonates, one sister's jaw was so rotted from the drug that her teeth loosened. She needed dental implants, though first she had to have a slurry of cadaver bone injected into her jaw, as her own bone would not hold the anchors, and she also needed cadaver tissue for gum grafts, as her palate was also affected. The other sister got off with just the pain in her femur that women suffering atypical fractures report before their femurs snap. After the drug was stopped, the pain stopped too. So, while catastrophic side effects may be "exceedingly rare," less-than-catastrophic effects, judging from my sisters' experience, are not.
122
I don't understand the numbers they gave here. My oncologist told me the risk was in the 1% range for this class of drugs. This was a couple of years ago, but I remember the advertisements at the time called these problems "rare". In no way is 1% "rare"
1
My dentist told me that among dental patients taking bisphosphonates, the incidence of complications with any procedure involving bone is 1 in 8. That's about 12 percent, and that's even LESS "rare." Dentists hate bisphosphonates but feel they have to keep quiet, as osteonecrosis of the jaw is not considered life-threatening, but a broken hip is.
1
Note that "you need to treat 50 to prevent one fracture" compares favorably to the 1:40,000 odds of developing an atypical fracture. So one could argue that the rational choice is to take them.
However, if the number needed to treat to prevent one fracture is 50, then 1 benefitted and 49/50 gained no benefit. I am not sure I would take a drug with only a 2% chance of helping me, but 100% chance of having the side effects.
However, if the number needed to treat to prevent one fracture is 50, then 1 benefitted and 49/50 gained no benefit. I am not sure I would take a drug with only a 2% chance of helping me, but 100% chance of having the side effects.
37
Of course we don't trust the drug companies. They pushed hormone replacement therapy down our throats, and it did quite a bit of harm. They pushed fen-phen, the diet drug combination, until it was discovered that the combo caused a lot of people to need their heart valves replaced, and others to die of primary pulmonary hypertension (not the same as ordinary hypertension, and always fatal). They charge thousands of dollars for a few lifesaving pills that cost pennies to make, and where the research was paid for by the taxpayer, not the pharmaceutical company. They have a history of misreporting the data to make their product look better than it is. I was prescribed an allergy drug which started cataracts growing in my eyes; as soon as I stopped the drug, the cataracts stopped growing. I'd rather put up with an occasional stuffy nose, thank you very much.
189
This is a downside of regulation. FDA governance and the Fair Balance Doctrine means that, in effect, patients are by mandate required to hear a disproportionate amount of information on adverse events. Bear with me.
Drugs that work with a downside in thousandths of a percent have to have that thousandth percent front and center. You can take a greater risk eating from an out-of-date can. People gamble on far lesser odds than many drugs with minimal side effects.
Couple this with a litigious bent in our culture - where a patient has been fully informed of risks - that feeds off the thousandth chance of an adverse event, and we have an industry that is on tiptoe over sometimes unrelated events.
People need to have all the information, but the vagaries of our marketing, litigation, and regulation effectively keep people ill. What's more, the intellectual gridlock means that real, true, useful and life-giving information is not disseminated.
The average Alzheimer's disease sufferer goes undiagnosed for 2 years. But who is responsible for telling people this? Where is the App that tests our cognition?
Hijacked between a regulatory body that perceives an outreach effort as a method of getting people on AD drugs, a politically hamstrung national health education body, and an industry where taking a risk to educate people carries a true financial burden, all while some shark sits around the corner ready to sweat the courts.
But hey, as long as you have your health.
Drugs that work with a downside in thousandths of a percent have to have that thousandth percent front and center. You can take a greater risk eating from an out-of-date can. People gamble on far lesser odds than many drugs with minimal side effects.
Couple this with a litigious bent in our culture - where a patient has been fully informed of risks - that feeds off the thousandth chance of an adverse event, and we have an industry that is on tiptoe over sometimes unrelated events.
People need to have all the information, but the vagaries of our marketing, litigation, and regulation effectively keep people ill. What's more, the intellectual gridlock means that real, true, useful and life-giving information is not disseminated.
The average Alzheimer's disease sufferer goes undiagnosed for 2 years. But who is responsible for telling people this? Where is the App that tests our cognition?
Hijacked between a regulatory body that perceives an outreach effort as a method of getting people on AD drugs, a politically hamstrung national health education body, and an industry where taking a risk to educate people carries a true financial burden, all while some shark sits around the corner ready to sweat the courts.
But hey, as long as you have your health.
5
Dr. Rosen's estimate of incidence of atypical fracture at one in 40,000 is VERY different than the trial listed which was about one in 2,400 (three in a 7180 person trial, half of whom skipped the first year on the med as a control), or with the article's estimate of 10-40 per 100K (which on the higher side is one in 2,500).
Another way to look at the same numbers is if one in fifty avoids a fracture that's 2000 out of 100,000 people, but as many as 40 have atypical fractures. So of people with a drug-impacted outcome one in 50 is dramatically negative. It would have been nice to see that statistic (which paints a rather different picture of the drug's risks). And that's ignoring both the medication's cost and other potential side effects.
Another way to look at the same numbers is if one in fifty avoids a fracture that's 2000 out of 100,000 people, but as many as 40 have atypical fractures. So of people with a drug-impacted outcome one in 50 is dramatically negative. It would have been nice to see that statistic (which paints a rather different picture of the drug's risks). And that's ignoring both the medication's cost and other potential side effects.
46
How nice that so many people have a choice whether or not to take anti osteoporosis drugs. I am told I can't take these drugs due to kidney damage...my doctors refuse to prescribe them even though my medical condition indicates a great risk for osteoporosis.
I'm tired of stories about people who make decisions based on irrational, emotional fears rather than actual research on risk, lacking even a simplistic understanding of statistics and probability. I have a relative whom I'm told may have just had a small stroke, but refuses to see a doctor because, well, you know they're all quacks, and they may want her to take Coumadin, the main ingredient in rat poison, and doctors only prescribe it because they're all getting kickbacks from big pharma. Wow. Hard to argue with such stunning logic.
But what should we expect in a world where people willfully and even proudly shun critical thinking, conflate facts and anecdotes, can easily find something on the internet to reinforce their worldview, and dismiss out of hand all information that might invalidate their preconceptions.
To those who are refusing to take these drugs because of low probability events, I hope you never fall (like I did) and crack a bone in your spine (like I did), because even 5 years later I am still suffering pain and horrible spasms on a regular basis from that event.
I'm tired of stories about people who make decisions based on irrational, emotional fears rather than actual research on risk, lacking even a simplistic understanding of statistics and probability. I have a relative whom I'm told may have just had a small stroke, but refuses to see a doctor because, well, you know they're all quacks, and they may want her to take Coumadin, the main ingredient in rat poison, and doctors only prescribe it because they're all getting kickbacks from big pharma. Wow. Hard to argue with such stunning logic.
But what should we expect in a world where people willfully and even proudly shun critical thinking, conflate facts and anecdotes, can easily find something on the internet to reinforce their worldview, and dismiss out of hand all information that might invalidate their preconceptions.
To those who are refusing to take these drugs because of low probability events, I hope you never fall (like I did) and crack a bone in your spine (like I did), because even 5 years later I am still suffering pain and horrible spasms on a regular basis from that event.
167
You aren't a doctor, and you are 100% incorrect.
1
Read the book "White Coat, Black Hat—Adventures on the Dark Side of Medicine"....then get back to me.
2
I am so sorry for your situation but there is little evidence that the drugs being discussed would have solved your problems.
1
Why is there no mention of vitamin K2 supplements? I believe it was a Japanese study that first showed high doses of Vitamin K2 (MK4) prevented fracture. Like vitamin D studies, there was not a significant amount of bone density increase, but a very significant reduction in fractures. One theory is that the high doses of Vitamin K2 makes the bone more flexible and thus, less likely to fracture. There are several other clinical trials currently in progress. When searching for articles or research, be sure to specify Vitamin K2.
I have had several fractures starting at age 46, two that required surgery My bone density went from osteopenia to osteoporosis in a very short time. I started taking vitamin D and high doses of vitamin K2 (45 mg daily) three years ago and have not suffered a fracture since. During that time I experienced three high-impact falls with no fracture. I have a bone density test next week, but regardless, I feel the Vitamin D and K2 regimen has served me well with no side effects.
http://onlinelibrary.wiley.com/doi/10.1359/jbmr.2000.15.3.515/full
http://www.medscape.com/viewarticle/509074_4
I have had several fractures starting at age 46, two that required surgery My bone density went from osteopenia to osteoporosis in a very short time. I started taking vitamin D and high doses of vitamin K2 (45 mg daily) three years ago and have not suffered a fracture since. During that time I experienced three high-impact falls with no fracture. I have a bone density test next week, but regardless, I feel the Vitamin D and K2 regimen has served me well with no side effects.
http://onlinelibrary.wiley.com/doi/10.1359/jbmr.2000.15.3.515/full
http://www.medscape.com/viewarticle/509074_4
63
No money in it?
1
Thanks Susan Lewis, just what I needed to read. Good luck with your next bone density test, I hope it is perfect. I have targeted proline and K2 because of your info and will add to the rest of my nutritional regimen which has served me well for 62 years. That is the way to go for me, thanks again.
2
Note to NYT - this is a good topic to pursue in depth.
2
It really is mind boggling to me that the physicians promoting these bone building drugs seem to be laboring under the false assumption that these drugs are a a great first-line treatment for osteoporosis, when the vast majority of studies show that the benefits are modest, if any, and they take an extremely long time to work, if they do at all. In many cases, the "new bone" being generated is still of poor quality, so there may be more of it, but it's even more likely to break. Bone is actually a collagen matrix to which minerals adhere, so trying to manipulate the mineral building process in an older person who doesn't make much collagen simply doesn't work because the collagen matrix isn't strong enough and is still full of holes. You have to start repairing the collagen matrix and address minerals at the same time, not with a drug, but by providing ample amounts of glycine, proline, vitamin c and copper to support collagen production along with abundant calcium, vitamin D, vitamin K, magnesium and zinc. This isn't some sort of alternative medicine; it's just the basic nutritional facts of building bone. If physicians don't start with that, then there's really no hope of any therapy building better bone.
434
Wow! Common sense. What is the real problem with using vitamins and minerals? Answer: you can't patent them, and if people get well they won't need the drugs. Now that's a huge, huge problem for the drug maker who has spent all this money making sure the right studies go into the right publications and the right doctors are "educated."
4
Right on! People need to determine why they have osteoporosis. I'm alive because of good medical care and some lifesaving medications but I strongly believe that the drug industry and at least some of the health-care industry is tuned to treating disease rather than curing it and that doctors are to some extent at the 'mercy' of those industries. The practice of medicine (and nursing) is very much led and sometimes stifled by the arenas in which they practice.
3
Great comment! How can you be sure you're getting enough glycine? From what I just read, the body synthesizes it, but doesn't make enough to support sufficient collagen production. Just thinking preventively here ...
1
I had one or other of this class of drugs recommended to me after a bone scan which showed mild osteoporis on one side. Since this was assumed to be the result of taking an unrelated drug, I was reluctant to add a second nasty substance to the already nasty substance which I will have to take for around 3 years total, so I did a good deal of research on the subject. 2 weeks later, I had come to the conclusion that most of the data was bogus, including the bone scan figures. Maybe when you've had 3 bone scans on the same (recently calibrated) machine, at the same time of day and with the same tech, you can rely on the results, but not till then. As for the drugs, well, yes, your bones get denser, but no data I saw supported the conclusion that there are fewer fractures except for one class of patient: over 85 year olds who have already had a fracture and are in a nursing home. For the rest of us the dangers definitely outweigh the possible benefits -- at least that was my conclusion.
130
Your comment on scan results interests me because when I asked for a comparison of a first and second scan, I was told comparisons couldn't be done unless--as you say--the scans were done on the same machine, etc. That certainly made me question the validity of results.
1
You're right in pointing out that bone scans can be problematic. Both positioning and the fact that the technician 'eyeballs' where to draw the measurement boundaries are critical issues.
2
Sorry but your comment about the scanning machines and data being bogus are simply wrong. The data the DXA machine captures and resulting information it provides is the patient data...nothing bogus about it. I have been in this field as a scientist from the very beginning, nearly 35 years now. The main issue is 1). Reimbursement is lacking for this procedure and thus, physicians are not properly following up their patients who are on these medications. DXA machines absolutely have the ability, are are approved (Hologic Inc., being the only one to my knowledge), to detect the very early stages of what are known as atypical femor fractures (AFF).
1
One key issue is that fosamax and similiar bisphosphonates rarely cause side effects if they are not used for more than several years. Then they are life-saving because hip fractures kill due to inevitable complications of immobilization.
But if the patient falls through the cracks and stays on the bisphosphonate too long, they can get brittle bones.
Another key issue is that Americans truly fail to understand math in the following way. They cannot seem to grasp numerators, denominators, and ratios. They do not understand that 3 in 100,000 airbags exploding spontaneously should not really be all that worrisome to the average person. I think this problem comes from lawyers trying to get $50 million for a life harmed by a freak event in a generally responsibly manufactured item or generally well maintained sidewalk or an airplane that is deemed to have a highly safe track record by the industry. The rule of law that the Federal Government embraces has huge limitations on normal societal functioning when we are paralyzed by the unreasonable liability for rare events.
If the American public cannot understand numerators and denominators, and has unreasonable fear about highly unlikely events, we know where it probably comes from.
But if the patient falls through the cracks and stays on the bisphosphonate too long, they can get brittle bones.
Another key issue is that Americans truly fail to understand math in the following way. They cannot seem to grasp numerators, denominators, and ratios. They do not understand that 3 in 100,000 airbags exploding spontaneously should not really be all that worrisome to the average person. I think this problem comes from lawyers trying to get $50 million for a life harmed by a freak event in a generally responsibly manufactured item or generally well maintained sidewalk or an airplane that is deemed to have a highly safe track record by the industry. The rule of law that the Federal Government embraces has huge limitations on normal societal functioning when we are paralyzed by the unreasonable liability for rare events.
If the American public cannot understand numerators and denominators, and has unreasonable fear about highly unlikely events, we know where it probably comes from.
21
Okay, maybe it's okay to take after knee or hip surgery for just a few years. At an older age!
My mother developed acid reflux some time after beginning Fosomax and after a few months of increasing misery, became so ill she ended up in the hospital for over a week. A dedicated reader of drug inserts, she had suspected early on the drug was the problem, but her doctor disagreed and urged her to keep taking it. I doubt her "adverse reaction" was ever reported anywhere because, first, her doctor still doubted Fosomax was at fault although she recovered within a few weeks after she refused to continue using it. Furthermore, in this country "Reporting of adverse events and medication errors by healthcare professionals and consumers is voluntary...." (from http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveil... Few consumers know they can file their own reports and most health care professionals don't seem to bother when the reactions are not as dire as broken thighbones. The same lack of reporting is true with the kind of adverse reaction my mother-in-law had to a statin. I believe we are severely lacking in any idea of the true prevalence of any but the most severe adverse reactions for many frequently prescribed drugs. And even then--Vioxx was approved in February 1999 and was not taken off the market until September 2004 by which time an estimated 20 million Americans had taken it. Later research estimated 88,000 Americans had heart attacks from taking it and 38,000 of them died.
192
The FDA link does not work for me. I think an alternate may be http://www.fda.gov/Safety/MedWatch/default.htm
3
This article fails to mention another reason people stop taking this type of medicine. A group of people taking these drugs experience intense joint pain and arthritis-like symptoms which make it very difficult to tolerate. I tried multiple times to take Actonel (risedronate) but experienced debilitating pain in my spine and a major increase in pain and swelling in the joints of my fingers where I already had some osteoarthritis. These joints hurt so badly I could barely turn my head or use my hands. And I understand that these symptoms can last for months if one takes the long-lasting version of theses types of drugs. These side-effects were so bad that I discontinued them depite real problems with osteoporosis.
152
I had the same experience with Fosamax, which I took for inly one week. I was so enfeebled that I couldn't even make it to the phone fast enough to answer before it stopped ringing. I quit the drug immediately, and felt MUCH better right away!
4
I take raloxifene (generic form of Evista) for my osteopenia, which is in a different class from the drugs discussed here. Both of my parents had osteoporosis, and I am a slight person of northern European ancestry. I chose not to take the drugs discussed in this article because I am already at risk for jaw problems. Five years ago I had radiation for throat cancer, and one side effect can be osteoradionecrosis (bone death caused by radiation) of the jaw. I know a number of folks online who have suffered the effects of this horrible condition. But if you are not already predisposed to have jaw necrosis, drugs in the Fosamax class seem to be a help. My mother, who took it with no ill effects, never broke a bone, but my dad, who didn't take anything for his bones, was eventually crippled when he broke his hip.
11
I know it's not legal for the makers of raloxifene to market it as preventing breast cancer, but apparently it can protect against some forms.
1
Atrial fibrillation is also suspected as a result of at least one of these drugs.
21
With what percentage of occurrence? Without statistics, this suspicion is meaningless. The chance of bone breakage is also highly associated with NOT taking the drugs.
It seems to me that the psychological phenomenon of loss aversion is taking place here. In financial psychology experiments, people are much more afraid of a small chance of losing something they have than they are enticed by a greater chance of winning something the don't yet own. So, in this case, the tiny chance of experiencing a negative symptom outweighs the much greater chance of avoiding osteoporosis-caused fractures.
Essentially, the psychological experiments reveal that humans are wired to make mistakes in this type of thinking. It is a sad fact, but perhaps it is evolution's way of getting rid of non-reproductive individuals that can't pass on their genes any more.
It seems to me that the psychological phenomenon of loss aversion is taking place here. In financial psychology experiments, people are much more afraid of a small chance of losing something they have than they are enticed by a greater chance of winning something the don't yet own. So, in this case, the tiny chance of experiencing a negative symptom outweighs the much greater chance of avoiding osteoporosis-caused fractures.
Essentially, the psychological experiments reveal that humans are wired to make mistakes in this type of thinking. It is a sad fact, but perhaps it is evolution's way of getting rid of non-reproductive individuals that can't pass on their genes any more.
2
Sad fact, the link between the medical practitioner and the Drug Industry mates patients beware of doctors’ advise. Wisely. The big names pushing new miracle drugs likely have an investment in them, and the local practitioner may have a new set of golf clubs in the closet thanks to the Drug merchant. If doctors recommended a daily dose of yogurt bones likely stronger but no money in dietary advise, says an 81 year old man with finger nails requiring bi-weekly trimming.
51
Is there any research looking into some genetic mutation or other commonality among the women who have suffered atypical fractures?
22
I'm sure the drug companies will "find" it.
1
I have had severe osteoporosis for many years, despite courses of 2 different medications. My doctor ordered blood tests prior to trying a new drug and surprise: we found that one of my parathyroid glands was producing so much PTH that the calcium was being sucked out of my bones. My surgeon removed the adenoma (benign) that he estimated had been there for 8-10 years and my bone density was already improved just 8 months later. This may not be the cause of osteoporosis for everyone, but a simple blood test can find out and perhaps spare a broken hip or thigh.
75
I am a periodontist and have treated the "rotting jaw" (osteonecrosis-BRONJ) problem for a patient of one of my referring doctors after he did a simple extraction. It is one nasty problem and hard to cure. The risk of a lawsuit by a rare patient that got osteonecrosis after a dental procedure because of these meds makes me describe in detail to every patient of mine the possible negative oral sequelae of using these drugs. Many quit the drug after talking to me and then talking their MD. I am not alone. Perhaps the medical problems of osteoporosis may be worse or more common, but in a malpractice action there is no balancing of risks, only the attack on the one doctor. Until we get rid of the malpractice attorneys and our bizarre system, I have to protect my dental patients and my family first. Under a different legal system, we could find a better way to present statistically the good and the bad of each drug and feel safe from attack from attorneys if our patient became the rare case that got the "rotting jaw".
234
All patients who are prescribed anti-Osteoporosis medication should be seen for an evaluation and possible treatment with a Periodontist prior to and during treatment.
1
I have a blood cancer and have received Zometa (zoleronic acie) for five years, first monthly and now every two or three months. From the beginning, I was warned by my oncologist to have any major dental work, essentially anything more than cleaning and filling, done before receiving Zometa or to take a break from the Zometa before having work done. I make sure my dentist knows the situation and he fully understands the protocol.
As a medical oncologist who has seen this happen to several patients, I agree with you 100%. Osteonecrosis is wretched.
It is important to educate patients about these drugs. While most oncology patients take them for metastatic disease, even those patients stay on the drug for a long time . I reduce the frequency of administration to every 3 months from monthly for those patients. I wonder if we should be re-evaluating the dose schedule in non-oncology cases. You may get the benefit with less of the rare but devastating side effects.
It is important to educate patients about these drugs. While most oncology patients take them for metastatic disease, even those patients stay on the drug for a long time . I reduce the frequency of administration to every 3 months from monthly for those patients. I wonder if we should be re-evaluating the dose schedule in non-oncology cases. You may get the benefit with less of the rare but devastating side effects.
As a small-boned white woman, every doctor for the past 15 years wanted me to go on one of these drugs for no real reason. Neither I nor any of my now-deceased female relatives have broken a bone or become hunch-backed. Why should I take a drug for a non-existent condition?
192
You don't need to be hunchbacked or have a broken bone to have osteoporosis.
7
Have you had any bone density scans or calcium blood work ups? it's sneaky. I was diagnosed at age 38 with osteopenia after a spinal injury riding a horse. 15 more years on birth control held back the bone loss. But after I had to go off it, boom, osteoporosis kicked it. have had a good turnaround on alenfronate after 2 years.
1
Because your observations are limited to your family, whereas the scientific studies backing the use of these now generic medications looked at many thousands of people.
1
And if diet and exercise were adhered to, would so many pills be necessary? And what about genetics; personal knowledge of health risks or not? The fact is people 'manage' their health in many ways. At least those who want (and often need) a way to maintain health can do so with medications if they so choose. Certainly, there are risks with prescription drugs but the informed consumer can choose... diet and exercise or a pill that may maintain health and mobility, along with a potential risk for side effects.
9
I believe a common side effect of these drugs is acid reflux. A common treatment for acid reflux is Prilosec, a drug that may weaken bones.
103
And I have met persons taking calcium carbonate per their MD while taking prilosec or similar. You can't absorb calcium carbonate without stomach acid. This is high school chemistry, apparently forgotten or never mastered.
1
There is no mandatory reporting of adverse effects in America, so how is anyone sure of the statistics? I would love to see what data they're using - and have the folks who review studies - and find all sorts of methodological problems - do so too.
I took these meds for the invented disease of osteopenia and was fine. I also took Hormone Replacement Therapy which was pushed as a panacea. Until the cancer data came out. I'm tired of being lied to by Pharma.
And don't stop at these meds. There is a whole group of statin doubters - there are huge issues with reporting of results and NO statistically significant data for primary prevention in women. Statins are known to cause plaque. Yet the uncritical drug pushing goes on.
If Pharma and doctors were trustworthy, we would trust.
I took these meds for the invented disease of osteopenia and was fine. I also took Hormone Replacement Therapy which was pushed as a panacea. Until the cancer data came out. I'm tired of being lied to by Pharma.
And don't stop at these meds. There is a whole group of statin doubters - there are huge issues with reporting of results and NO statistically significant data for primary prevention in women. Statins are known to cause plaque. Yet the uncritical drug pushing goes on.
If Pharma and doctors were trustworthy, we would trust.
177
The results of statistics have a lot to do with who did the trials and who paid for them; I never believe stats unless I know that information.
3
Google the Therapeutics Initiative website from the University of British Columbia in Canada for the problems of both the Bisphosphonates (osteoporosis) and the statins.
It's very interesting indeed. And very persuasive.
For those who don't look it up, suffice it to say that they come out against - in a big way - especially for the Bisphosphonates.
It's very interesting indeed. And very persuasive.
For those who don't look it up, suffice it to say that they come out against - in a big way - especially for the Bisphosphonates.
1
Gee, I thought it was because we were taught that the drugs don't really work. Who wants to be an uniformed guinea pig?
13
Boy this topic hits home. I used to take Actonel, but stopped because my bone density scores were stable. Since then I've have had numerous fractures in falls over the past five years, including a horrific one on a cobblestone street that left me with a broken sternum, three neck breaks, and two in my upper spine. I 'be also had an insufficiency fracture, which means a spontaneous bone break without my knowing.
My endocrinologist has told me I have poor bone quality, independent of bone density scores. She put me on Forteo, a biologic drug that's very expensive and annoying, because of the need for daily injections. It carries a black box warning for bone cancer that surfaced in studies of lab rats. However if you have had multiple fractures and spent 3 months in a body brace, you will do anything to avoid another fracture.
Today I have chronic pain from all these fractures and I'm only in my late 60s. I understand the fear of women about necrosis of the bone from bisphosphonates. I have similar fears of bone cancer from Forteo. Frankly there are no easy answers: osteoporosis runs in my family and even though medications can help, they are no guarantee against future fractures.
If I had a daughter today I would counsel daily glasses of milk and lots of weight bearing exercises starting at an early age. In my case, I believe it was lack of milk that caused early onset osteopenia.
My endocrinologist has told me I have poor bone quality, independent of bone density scores. She put me on Forteo, a biologic drug that's very expensive and annoying, because of the need for daily injections. It carries a black box warning for bone cancer that surfaced in studies of lab rats. However if you have had multiple fractures and spent 3 months in a body brace, you will do anything to avoid another fracture.
Today I have chronic pain from all these fractures and I'm only in my late 60s. I understand the fear of women about necrosis of the bone from bisphosphonates. I have similar fears of bone cancer from Forteo. Frankly there are no easy answers: osteoporosis runs in my family and even though medications can help, they are no guarantee against future fractures.
If I had a daughter today I would counsel daily glasses of milk and lots of weight bearing exercises starting at an early age. In my case, I believe it was lack of milk that caused early onset osteopenia.
32
Not enough milk is not your problem. Where do cows and horses and elephants great their great bones? From lots of natural grass and leaves. A diet high in minerals from vegetables plus good protein and healthful fat will contributed to strong bones. But exercise is a must. Also, thin bones, which usually slender older women have, can be excellent quality and strong.
2
I did Forteo after a fall resulting in mutiple breaks of long bones. I gave up on it after half a year, though, because my pharmacy had trouble obtaining it every month, and I hated the injections. I am supposed to be taking Fosamax, but have had some side effects that make me wonder whether I will continue. But it is your statement about telling a theoretical daughter to drink milk and do weight bearing exercises that I want to address. The fact is, one's genes count for as much or more as diet and physical activity (assuming no prolonged steroid use, alcoholism, or other risk factors). I was always a healthy eater, consumed loads of calcium (from many sources, not just dairy), never smoked, drank little alcohol, and was very fit and athletic. And yet, with all that, I had developed severe osteoporosis by my mid-50s. It runs in my mother's family. So, yes, it is good to advise the young to build bone while they can, but it won't stop the decline if that is in their genetic code. Better advice would be to work on staying active, nimble, flexible -- to develop and keep up excellent reflexes and balance skills -- so that you are less likely to fall as you age.
2
Be careful about depending on milk to save your bones: "........drinking large amounts of milk did not protect men or women from bone fractures......."
webmd.com
webmd.com
1
This article reads like a pharmaceutical advertisement. I'm surprised it didn't end with "Ask your doctor about Fosamax."
Osteonecrosis of the jaw is a horrific thing. Rare or not, people are right to be scared of it. It's a modern reappearance of what used to be called "phossy jaw" -- a nightmare malady that afflicted girls working in matchstick factories around the turn of the 20th century. At that time it was considered an acceptable risk to go along with a newly industrialized society, just like now it's considered an acceptable risk to go along with our medicalized society.
How about an article about the significant diet and lifestyle factors involved in osteoporosis?
Osteonecrosis of the jaw is a horrific thing. Rare or not, people are right to be scared of it. It's a modern reappearance of what used to be called "phossy jaw" -- a nightmare malady that afflicted girls working in matchstick factories around the turn of the 20th century. At that time it was considered an acceptable risk to go along with a newly industrialized society, just like now it's considered an acceptable risk to go along with our medicalized society.
How about an article about the significant diet and lifestyle factors involved in osteoporosis?
176
In order to build "bone" the drug makes the body borrow from where ever it can to increase bone mass where it's less dense. The bones it forms are of inferior quality, and it causes things like osteonecrosis of the jaw (among other maladies). There is not one time I visited my GP after I turned 50 when he didn't recommend me to take Fosamax. There must be some really good kickback.
1
I do think it is not an ant- science reaction, but a response to having had pharmaceutical companies mis-inform the public - or simply the lack of enough information on cost/benefit to individuals, and, as noted here, the really horrific ways that the atypical fracture occurs. On the other hand, - as for many other women - my mother's shattered hip, solely do to 'natural 'osteoporosis, was just as horrific. Another woman who was nearby told me that she heard the bone break . . .
For purely selfish reasons - and to save Medicare - I hope scientists can create more effective ways of countering osteoporosis (which most likely will be about preserving bone earlier). This lands too many women in nursing homes: finding effective and tolerated means of keeping bones healthy for life would save misery and millions of dollars.
For purely selfish reasons - and to save Medicare - I hope scientists can create more effective ways of countering osteoporosis (which most likely will be about preserving bone earlier). This lands too many women in nursing homes: finding effective and tolerated means of keeping bones healthy for life would save misery and millions of dollars.
20
These drugs cause damage to the esphogas as well. I took them. I stopped. My bone density never improved.
47
Your bone density doesn't improve, it just doesn't get worse.
26
Actually bone density can improve. Mine has.
1
@elleng: False. I stopped taking a bisphosphonate, and my bone density DID improve, as indicated by results of my DEXA scans (which go back 16 years at this point).
Also I have been helped by supplementing Vitamin D3, magnesium, eating a lot more dark green leafy veggies, and doing weight-bearing/weight-training exercise.
Also I have been helped by supplementing Vitamin D3, magnesium, eating a lot more dark green leafy veggies, and doing weight-bearing/weight-training exercise.
3
I agree with the comments so far. 10 years ago my GP prescribed one of these drugs for me because I was menopausal and because it was the next big thing. No osteoporosis test. "It's good for you. It will keep you from breaking a hip."
It also caused my stomach to ache constantly beginning the third time I took a pill. I immediately stopped and the next time I saw her I said no way to that stuff.
Next she wanted me to take hormones because it would..... well you know blah blah blah.
Is it no wonder that we go to the internet for medical advice and try to get by with junk from the health food store.
This random prescribing of pills just to boost the medical complex's bottom line has to stop.
It also caused my stomach to ache constantly beginning the third time I took a pill. I immediately stopped and the next time I saw her I said no way to that stuff.
Next she wanted me to take hormones because it would..... well you know blah blah blah.
Is it no wonder that we go to the internet for medical advice and try to get by with junk from the health food store.
This random prescribing of pills just to boost the medical complex's bottom line has to stop.
278
So well said; thank you.
3
There's a lot of "junk" at the health food store that will actually keep you healthy.
Exactly. When the docs have the time to actually read the lit - the real literature - not just the marketing materials given to them by the pharmaceutical reps, maybe then we women will be able to trust them more.
I was told after a dexascan, that I have a 25% chance of breaking a bone in the next 10 years. Then I was given one choice = Prolia. Taking it means you can't have any major dental surgery along with the other potential side effects. So here I am, 67, had an implant last year and planning to have a cap redone in the near future. Certainly the odds of me needing dental work and the odds of breaking my femur in the next 10 years need to be balanced. I'll take the dentist thank you very much.
We women have been the unwitting test subjects for too long. I said no to hormone therapy and I'm so glad I did. Said no to statins before the data came out. Again, glad I did. My first line: lifestyle changes - diet, exercise and nutrients.
Post script: I can read statistics and I shun the anecdotal but I found it very interesting that the number of people who dropped out of the trials were almost 50%. No reason was given.
I was told after a dexascan, that I have a 25% chance of breaking a bone in the next 10 years. Then I was given one choice = Prolia. Taking it means you can't have any major dental surgery along with the other potential side effects. So here I am, 67, had an implant last year and planning to have a cap redone in the near future. Certainly the odds of me needing dental work and the odds of breaking my femur in the next 10 years need to be balanced. I'll take the dentist thank you very much.
We women have been the unwitting test subjects for too long. I said no to hormone therapy and I'm so glad I did. Said no to statins before the data came out. Again, glad I did. My first line: lifestyle changes - diet, exercise and nutrients.
Post script: I can read statistics and I shun the anecdotal but I found it very interesting that the number of people who dropped out of the trials were almost 50%. No reason was given.
1
Look, we women have been experimented on for decades by drug companies first turning menopause into a "disease" needing treatment with estrogen. Then, the Women's Health Initiative quickly stopped its Estrogen trials after seeing that the hormone caused problems. After that, many people, as soon as they learned about bad side effects to drugs they'd been told to take to prevent osteoporosis, quickly dropped that as well!
People, men and women alike, are getting tired of drug companies ranmming expensive drugs with bad side effects down our throats. They should be banned from advertising drugs on TV!
Eat well. Do your exercise - particularly strength training.
People, men and women alike, are getting tired of drug companies ranmming expensive drugs with bad side effects down our throats. They should be banned from advertising drugs on TV!
Eat well. Do your exercise - particularly strength training.
320
Those conclusions (assumptions, really) from the WHI study have since been rethought. You might want to revisit the subject. And your advice to do strength training for bone health is misinformed. The theory (myth?) that the force of opposing muscles pulling against bone will somehow increase density has not stood up to study. Bone must be partly broken down in order to rebuild -- stronger, denser -- and that means the repetative trauma of running, jumping, or similar, pounding exercise. Not strength training or swimming. And it is not clear whether any substantial mass of new bone can be built in later life. Behind a certain age, one can only hope to achieve stasis, it seems.
1
Yes, TheraP, my older sister, her best friend and my best friend from high school in the 60s all have had estrogen-related cancer caused by hormone-producing drugs they took. Fortunately, I refused to take them.
2
@Passion for Peaches:
Strength training will help you stay on your feet. And staying on your feet will make a fall with broken hip less likely.
Also protects the knees, if you strengthen the muscles of your upper legs.
Strength training will help you stay on your feet. And staying on your feet will make a fall with broken hip less likely.
Also protects the knees, if you strengthen the muscles of your upper legs.
2
“You do have to stick with the science,”
Yes, but how can you stick with the science when you have little or no sense of probabilities or how to properly weigh risk and benefit? Are people being treated for cancer with drugs or radiation (both are carcinogenic) refusing treatment in the same numbers? I doubt it but maybe that should be an option.
I am not surprised to read about patients making statistically unsound decisions. They do so all the time.
Yes, but how can you stick with the science when you have little or no sense of probabilities or how to properly weigh risk and benefit? Are people being treated for cancer with drugs or radiation (both are carcinogenic) refusing treatment in the same numbers? I doubt it but maybe that should be an option.
I am not surprised to read about patients making statistically unsound decisions. They do so all the time.
22
@A Goldstein: I don't think patients are making statistically unsound decisions; I think the science simply is not there. Frankly, most doctors are abysmal at understanding & interpreting statistics, so don't go patting yourselves on the back about that either.
In my own circle of neighbors & friends, TWO have had necrosis of the jaw after taking an osteoporosis drug. Not a statistically significant sample, except in MY world! And I saw what hell those women went through.
Further, very few retired people have dental coverage, so the cost of treating the jaw necrosis was enormous - to say nothing of the pain, stress, suffering and anxiety these women endured, and the tremendous amount of time it took for them to recover.
In my own circle of neighbors & friends, TWO have had necrosis of the jaw after taking an osteoporosis drug. Not a statistically significant sample, except in MY world! And I saw what hell those women went through.
Further, very few retired people have dental coverage, so the cost of treating the jaw necrosis was enormous - to say nothing of the pain, stress, suffering and anxiety these women endured, and the tremendous amount of time it took for them to recover.
3
It's knowing that scientists are never wrong and never obfuscate facts that allow me to sleep peacefully each night. Just knowing that their are so many studies never submitted for publication because of their undesired outcomes is enough to know that science is rigged.
3
I have seen the effects of dental extractions in a patient on Zometa with an entirely rotting mandible. Nightmarish.
If you are a patient needing these drugs for osteoporosis or metastatic cancer to the bone, please first see a periodontist for an exam prior to beginning the drug for an exam.
If you are a patient needing these drugs for osteoporosis or metastatic cancer to the bone, please first see a periodontist for an exam prior to beginning the drug for an exam.
104
As a retired Periodontist, I could not agree with you more.
It is the responsibility of the Physician to make sure that their patients are in good Periodontal and Dental health before prescribing any Osteoporosis meds. A consultation with a Periodontist should be part of the Medical Standard of Care for Osteoporosis.
It is the responsibility of the Physician to make sure that their patients are in good Periodontal and Dental health before prescribing any Osteoporosis meds. A consultation with a Periodontist should be part of the Medical Standard of Care for Osteoporosis.
5
I have tremendous bone loss in my mouth and participated in a University of Washington 2-year study to see if their osteoporosis drug prevented jaw bone loss. It did not. My bone loss is due to dental allergies to metals and other materials used to "fix" my teeth.
These poor women already have osteoporosis. Remember all the doctors pulling women off HRT immediately after the initial study results? How many of these women could have had their osteoporosis prevented? Perhaps prevention, where reasonable with HRT makes more sense.
20
That echoes my own suspicions. HRT turned out not to be a dreadful mistake - nor a panacea that preserved youth - but another drug regimen that needed to be evaluated individually.
5
As I understand it, you are at less risk if you take a vacation from the drug after 5 years of use. Not sure how long the recommended hiatus is.
6
Not exactly. The current recommendation for Fosamax is five years not to lessen risk, but because data suggests there is little or no benefit to be gained by using the drug for longer. Apparently, measurable improvement in bone density plateaus, or something. That is what my doc told me.
2
I am very surprised to find the NY Times taking this strong a position in favor of these controversial drugs. I was really struck by another article with a similar position published on April 1, "Exercise is not the path to strong bones."
http://www.nytimes.com/2016/04/02/health/exercise-is-not-the-path-to-str...
I have osteoporosis and know there are many doctors who would argue a bit differently. I think the NY Times should be giving more background on why people DO advocate exercise and nutrition. Why so pro-drug?
http://www.nytimes.com/2016/04/02/health/exercise-is-not-the-path-to-str...
I have osteoporosis and know there are many doctors who would argue a bit differently. I think the NY Times should be giving more background on why people DO advocate exercise and nutrition. Why so pro-drug?
255
Isn't pharmacology the largest lobby of them all?
4
simple , its advertising money.
2
I followed your link to the April article which denigrated exercise as a means to improve bone strength. I then went into the MedLine database and crossed "exercise" with "bone mass" and limited to review articles only and got about 365 hits. I went through the first twenty abstracts, and none agree with the NYT article. To quote from a review by physicians at Yale Medical School:
"A well-balanced diet, exercise, and smoking cessation are key to maintaining bone health as women age. Pharmacologic agents should be recommended in patients at high risk for fracture." Lupsa and Ignosa, Endocrinology & Metabolism Clinics of North America. 44(3):517-30, 2015
That pretty well sums up the review literature on exercise and maintaining bones and where drugs fit in. And that means the April article in the NYT was crock.
"A well-balanced diet, exercise, and smoking cessation are key to maintaining bone health as women age. Pharmacologic agents should be recommended in patients at high risk for fracture." Lupsa and Ignosa, Endocrinology & Metabolism Clinics of North America. 44(3):517-30, 2015
That pretty well sums up the review literature on exercise and maintaining bones and where drugs fit in. And that means the April article in the NYT was crock.
2
The article makes it appear that one has two options: take the drugs or become an invalid from bone breaks. That's really not the case at all. I've had multiple disk degenerations but I"m not living "in constant pain" because I go to the gym twice weekly and do resistance training for my core muscles. I've even regained 1 1/2" of the 3 I lost! I also do endurance workouts at pulmonary rehab and I know to always stand with good posture and yes, it IS possible.
I was first prescribed an oral med for "osteopenia" which I believe is a drug looking for a disease. I have GERD and this made it significantly worse so I stopped the meds. It was suggested that I consider one of the infusion drugs but as I am the poster child for adverse reactions and already take a pharmacy of pills for my bronchiectasis and asthma (and GERD!), I chose not to add yet another drug to my "witches brew". My doctors don't disagree with my choice an agree it IS my choice.
My mother was very frail an took lots of steroids for her Lupus the last 10 years of her life (she died at age 85) and she never had a fall or a break. My father, seriously overweight, fell constantly the last 5 years of his life and never broke a bone. I'm counting on my genes and will never take one of these drugs unless I have a very serious break.
I was first prescribed an oral med for "osteopenia" which I believe is a drug looking for a disease. I have GERD and this made it significantly worse so I stopped the meds. It was suggested that I consider one of the infusion drugs but as I am the poster child for adverse reactions and already take a pharmacy of pills for my bronchiectasis and asthma (and GERD!), I chose not to add yet another drug to my "witches brew". My doctors don't disagree with my choice an agree it IS my choice.
My mother was very frail an took lots of steroids for her Lupus the last 10 years of her life (she died at age 85) and she never had a fall or a break. My father, seriously overweight, fell constantly the last 5 years of his life and never broke a bone. I'm counting on my genes and will never take one of these drugs unless I have a very serious break.
52
I agree about the genes. There is no osteoporosis in my family. Both of my sisters, who were prescribed bone-building drugs, temporarily for different reasons, got off them as soon as possible because of the gastro-intestinal side effects (dismissed by their doctors as impossible). And guess what? The problems went away as soon as the drugs were stopped. As for myself, at 75 I take no drugs for any reason, have exercised all my life and have lost no more than an inch in height. I think I'll stick with what I'm doing.
12
I just love reading comments about how exercise and proper diet are all one needs to solve one's health problems.
I have lupus. On a good day, I just feel tired and weak. On a bad day, just lifting one arm above my head feels like a 300 pound weight is attached to it. A minor fall 5 years ago caused a T11 fracture. But sure, let me just run out to the gym a few times a week, risk catching every virus in the vicinity, and simply ignore the fatigue and pain from severe spinal stenosis and systemic arthritis. No problem, take that, medications.
IMHO anecdotes serve no purpose except to justify the experience of the tellers, and frighten or lay guilt trips on the listeners.
I have lupus. On a good day, I just feel tired and weak. On a bad day, just lifting one arm above my head feels like a 300 pound weight is attached to it. A minor fall 5 years ago caused a T11 fracture. But sure, let me just run out to the gym a few times a week, risk catching every virus in the vicinity, and simply ignore the fatigue and pain from severe spinal stenosis and systemic arthritis. No problem, take that, medications.
IMHO anecdotes serve no purpose except to justify the experience of the tellers, and frighten or lay guilt trips on the listeners.
5
With all due respect, merely stating one has lupus (in so doing repeating an anecdote by the way), doesn't tell us very much.
There are four main types of lupus, and within each main type there are many subtypes, each with different effects depending upon a host of factors.
The four main types of lupus are:
* systemic lupus erythematosus (SLE)
* discoid lupus erythematosus (DLE)
* drug-induced lupus
* neonatal lupus
If one has SLE, for example, the condition can vary from mild, which is the most common expression of SLE, to life threatening, depending on the subtype of SLE and which organs are affected.
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/lupus
There are four main types of lupus, and within each main type there are many subtypes, each with different effects depending upon a host of factors.
The four main types of lupus are:
* systemic lupus erythematosus (SLE)
* discoid lupus erythematosus (DLE)
* drug-induced lupus
* neonatal lupus
If one has SLE, for example, the condition can vary from mild, which is the most common expression of SLE, to life threatening, depending on the subtype of SLE and which organs are affected.
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/lupus
2
Beside the potential side effects: How beneficial are these drugs quantitatively ? My impression was the benefit was marginal. Some data on that would be helpful.-
111
My family has a history of osteoporosis as well as a history of not being able to tolerate popular drugs like Fosomax and Boniva meant to combat osteoporosis.
Especially when clotting is an issue anyway, lots of milk, yogurt, and walking will have to suffice.
Especially when clotting is an issue anyway, lots of milk, yogurt, and walking will have to suffice.
20
How many times have we been assured by drug companies in the past 10 years that certain very bad side effects were "rare," only to find out that those side effects were actually not so rare? People are right to distrust doctors and drug companies. Corruption in western medicine today is rampant. It is the direct result of profit-driven healthcare. The current nationwide opioid epidemic is the direct result of a single drug company spreading lies about how safe opioids were, and how minimal the risk of addiction would be for those who took them long term. I have yet to hear of any repercussions for that drug company. They made billions selling what they claimed was a very safe solution for pain. People are dying every day across the U.S. now as a direct result of their blatant lies, which doctors bought hook, line and sinker. Very few doctors actually take the time to read the studies. If they did, they would see how deliberately rigged so many drug studies are, to play up the benefits and play down the risks.
158
I get the once a year IV drip of Zoledronic Acid Monohydrate 5mg/100ml. Absolutely no stomach upsets or acid reflux.
16
It's not just the bone fracture risk. I got terrible flu-like symptoms from one drug and felt sick to my stomach from another one which I gamely took weekly for several months. I take many other pills with absolutely no noticeable averse effects. These osteoporosis drugs are poison.
61
As someone who was trained as a scientist and actually worked as a professional statistician in the medical field, let me tell you something about scientific paradigms...
Group data are one thing, individuals another.
From the doctor's perspective, if group odds favor a particular protocol, that is likely to be the recommendation for each individual patient, other things being equal.
Unfortunately, group data will not necessarily bear on the experience of individual patients who do not fit a given norm. Nuances of this nature are frequently glossed over, if they're noted at all.
If 7 of 10 people benefit from a drug and 3 are not helped or even harmed, money is to be made and pills will get sold. Unfortunately, if you are 1 of the 3, you better be alert to the dangers or else.
Seriously, every diagnosis and prescription needs a second opinion, i.e., the patient's own well-informed experience/opinion.
My intuitive guess is a low level of patient compliance is telling a tale of rampant side effects and borderline medical malpractice. If the drugs were safe and effective and the physicians were prudent and competent, there would be better compliance.
Ordinary people are simply not as stupid as some of you might like to think.
Trust but verify...
Group data are one thing, individuals another.
From the doctor's perspective, if group odds favor a particular protocol, that is likely to be the recommendation for each individual patient, other things being equal.
Unfortunately, group data will not necessarily bear on the experience of individual patients who do not fit a given norm. Nuances of this nature are frequently glossed over, if they're noted at all.
If 7 of 10 people benefit from a drug and 3 are not helped or even harmed, money is to be made and pills will get sold. Unfortunately, if you are 1 of the 3, you better be alert to the dangers or else.
Seriously, every diagnosis and prescription needs a second opinion, i.e., the patient's own well-informed experience/opinion.
My intuitive guess is a low level of patient compliance is telling a tale of rampant side effects and borderline medical malpractice. If the drugs were safe and effective and the physicians were prudent and competent, there would be better compliance.
Ordinary people are simply not as stupid as some of you might like to think.
Trust but verify...
347
Strange to provide the example: "If 7 of 10 people benefit from a drug..." when the report states: “You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture,” said Dr. Clifford J. Rosen, a professor of medicine at Tufts University who has no association with the makers of the drugs." An argument about 7 in 10 is totally unrelated to numbers like 50 and 40,000.
16
“You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture,”
8
So let's extrapolate as I believe taopraxis was simply citing a hypothetical, not related to the stats in this article. So, if 1 in 50 people benefit from this class of osteoporosis drugs, and 1 in 40,000 have an almost catastrophic side effect, that means that out of 40,000 people, 800 or 2% will be helped, and 98% will not be helped at best, or will experience only minor inconsequential side effects. That's if we trust the after market nonmandatory adverse effect reporting is correct. So going in, a person at risk for osteoporosis has a 98% chance that it will not help them. Is that a good gamble? A 2% chance of winning?
4
I won't take it because I feel I have been lied to. Remember those poor women who were told to take this for the fake disease "osteopenia"? Women have suffered horrible stomach problems, why isn't that highlighted? The drug companies have lied and withheld information. Why should I trust them now?
262
There is also Evista (ralexifene), which is not mentioned and is not one of the drugs which causes fractures. It's main side effect is an increased risk of blood clots.
44
My doctor recommended that I take Evista, even though my mother died of a clot-related stroke. She took Fosamax, and developed aortic stenosis - no one in our family had ever had that happen - probably causing the stroke. Yes, she lived to age 90 - but her brother lived to age 96 and her sister, age 92, is going strong. Her grandmother lived to 102. All had - and my aunt has - osteoporosis.
My aunt refused drugs after seeing what happened to my mother, and so have I. I took estrogen at one point - assured it was fine - another bit of science that was debunked. (I stopped cold turkey after developing a benign breast cyst.) I do yoga and upper body exercises, run and eat calcium-rich vegetables. And keep my fingers crossed. No drugs.
My aunt refused drugs after seeing what happened to my mother, and so have I. I took estrogen at one point - assured it was fine - another bit of science that was debunked. (I stopped cold turkey after developing a benign breast cyst.) I do yoga and upper body exercises, run and eat calcium-rich vegetables. And keep my fingers crossed. No drugs.
45
Could you please describe numbers on the risk of blood clots. Thank you.
1