I recently was put on Gabapentin when I was hospitalized for severe muscle inflammation and a frayed tendon in my hip. At first I had some kind of involuntary muscle spasm (just lasting a night) and slept most of the time. They also gave me Oxycontin and Diclofenec and a muscle relaxer on top of all my other medications. After five weeks in rehab in a nursing home where I was weaned off Oxycontin, my doctor took me off the Diclofenec and told me to take it only when I have pain. I noticed after a while that I wasn't so sleepy and that it was working wonders for my restless legs syndrome and now I can stay awake all day and feel alert. I have very little pain requiring the occasional tylenol.
I was very afraid of taking Gabapentin and all these other medications because I had heard of terrible side effects and addiction. In my case, they did not materialize and so far I am thriving on Gabapentin. I am now glad I am taking it and I wonder why it worked for me.
After years of suffering from severe depression that was always treated, but refused to remain in remission, I allowed myself to become an inpatient for ECT treatments. Three times per week for over 2 months, until I could become an outpatient.
The treating psychiatrist had no bedside manner. Although the treatment may have worked, talk therapy has been more beneficial. And the ECT did irreparable damage to my heart.
I was prescribed a drug by a cardiologist who was too busy (or simply didn't care) to attend to my concerns filtered through the joke of a physician assistant. That doctor is no longer my doctor.
Second opinion from another practice: Get right off the drug. Numerous terrifying symptoms immediately disappeared. But in the meantime, I'd been so scared on vacation that I took myself to a hospital for an MRI, thinking I'd experienced a stroke.
The medicatiom and what I see as cavalier treatment by the first doctor caused unimaginable distress.
1
Don’t take drugs unless you will definitely die without it.
Also don’t take vitamins or supplements which are worthless unless you are a recently released prisoner of war from a third world nation.
Medicine benefits the pharmaceutical industry and the doctors who prescribe the stuff and then prescribe more when you go back to them with your side effects.
1
Those are three of the drugs to which I had life-threatening reactions over the last few years. One of the side effects of prednisone is high blood sugar and was listed as rare - about 10 or so weeks into this treatment, my vision suddenly changed. It was type 2 diabetes and I began taking insulin . The rheumatologist told me that my blood sugar would revert to normal (which it did not, now a Type 2 diabetic). He told me that because of my age, I had probably been prediabetic (which by the way is not a diagnosis). He then prescribed Sulfa for me. I read what I could find about the drug and when in two weeks an itching rash developed, the doc told me to stop it.
My endocrinologist advised me to stop insulin. She prescribed Metformin and I had rapid weight loss. The next idea was to try other oral meds. We decided against theI'mm - similar side effects to Metformin. I am back on insulin and my diabetes is well controlled. I take methotrexate for the arthritis - this summer I had two bouts of cellulitis in one area of one foot, as methotrexate (which is effective 'enough') can suppress the immune system.
Side effects can be life-threatening, and doctors need to be more cautious about informing their patients of possible reactions, including the rare ones.
As I usually say, none of the conditions I have will kill me tomorrow - heart disease included - thanks Mom - except maybe the drugs that seem to help me live life as I wish.
1
Thank you for this article. In 2016, I was literally “bullied” by a doctor to take a heavily advertised “biologics” for a serious flare-up of UC. I became much sicker including leg pain - not usually a UC symptom. After a second doctor and four more biologics, all providing minor relief and chronic exhaustion, I went off the fifth one and within two weeks my serious symptoms had ceased. The opioid crisis is the most dramatic example of Pharmaceutical corruption. I believe it happens regularly with every new drug they try and foist upon the public.
1
My recently diagnosed son( RA)
insists he will not ale his chances of severe illness and death rather than take a biologic which suppressed your immune system. Horrific as these kinds of choices are in life. I think I would wish him to try the biologic if his disease progressed or the older dmard he is on now stops working but either choice is a nightmare.
Grapefruit juice with statins!! Please check that statement. Grapefruit juice is counter indicated
At age 65 I was diagnosed with hypertension 14 months ago despite a very intensive routine exercise program, a healthy diet , normal body weight and zero exposure to tobacco or any other narcotic. Lifestyle choices are not responsible for my hypertension
Since then I have tried around 18 different anti hypertensive drugs. The ones that lower my BP cause extreme side effects such as debilitating headaches, exhaustion, excruciating abdominal pain etc. I have spent a night in the ER thanks to ACEIs. The benign drugs do not seem to lower my BP.
I have a relatively young primary care Dr who has always taken my complaints seriously. I have routinely discontinued many of these drugs and informed the Dr afterwards.
I thought, before reading this column that I was in a tiny minority of patients who are hypersensitive to certain drugs. Apparently this is a somewhat common experience.
In the barrage of information in the public domain about the criticality of treating essential hypertension you will find almost nothing about the routine side effects of these drugs. There may be many options to treat hypertension but there is plenty of room for better drugs with fewer side effects.
2
I am currently suffering debilitating side effects from Aimovig, a new migraine injection that is advertised on TV constantly with the only listed side effect of constipation. The first six months of the injections I was migraine free and thought it was a miracle. Then I ended up in the ER after I fainted and experienced severe vertigo, crippling anxiety and depression, nausea, blurred vision, tinnitus, digestive issues, severe fatigue, etc. My neurologist was paid $16,000/yr to prescribe Aimovig and told me my side effects were not from the drug (it was the only drug I was taking). After months of suffering, I finally googled and found 12,000 patients suffering severe adverse side effects from Aimovig reported to FDA and still no warnings or label change. The drug has a 28 day half life and will take 5 months or more to leave my bloodstream. I finally found a female internist who is helping me and monitoring all my abnormal bloodwork, but the drug is so new, even she doesn’t have answers. Basically Aimovig blocks CGRP a protein needed in nearly every organ in your body—it cannot be safely blocked long term without severe side effects in your entire body. These new biologics cost $8,000/yr and are huge money makers for big pharma. Sadly, I along with thousands were their guinea pigs and may never recover from these drugs.
5
Ms. Brody, you have done a great public service with this article. While seniors are not a monolithic group by any means, we do have among us older persons who are not accustomed to questioning doctors’ prescriptions, or who don’t have the facility to research deleterious and even dangerous side effects - not to mention contraindications for many drugs. Anyone who has experienced a concussion from a fall, and its lingering side effects that include migraine, has gone through the entire gamut of scrips that include strong anti-depressants, which can precipitate a debilitating slowdown of normal bodily functions such as Ms. Brody experienced, including daytime sleepiness, weight gain, and severe insomnia. At some point, ask the physician: would an over-the-counter painkiller be just as good? That’s what I asked my neurologist earlier this year, after a concussion _two_ years ago had reverberating side effects that were not ameliorated by the usual “suspects” of nortriptelene (sic), gabapentin, and other meds whose original purpose was *not* pain alleviation. Her answer: Excedrin Migraine and an herbal supplement called Migre-Leaf. I immediately stopped the other meds, switched to the OTC remedies, and have felt better ever since - and I rarely get headaches now.
2
Jane Brodie -- you take care of yourself! You are a national treasure and we all need your wisdom and sound counsel.
10
One of the problems is the way that medical care is dispensed these days. We have our primary care physicians (usually nurse practitioners or DOs and not actually MDs) who send people out to see specialists. There is no coordination among the specialists, so random drugs are prescribed to treat just the issue the specialist is treating for. Pharmacists are useless....glorified pill counters. So, we are left to do basically life saving medical research on our own and then make decisions without adequate training. I landed in the ICU twice this past year, and thank God I did, because I found out that I had been on drugs that when taken together might kill me. The medical profession has lost is way, mostly due to the requirements that doctors perform the least amount services for a patient. I do thank the people who work tirelessly in the ICU, who saved my life twice.
8
I got auditory hallucinations from an antimalarial drug that was similar to Larium. I'd had to stop taking the initial drug I was prescribed to to an insanely red and itchy rash covering both my arms. Me and medications don't really mix.
1
95% of all prescriptions are medically unnecessary.
19
@StevieYou have science and stats for this statement? Hyperbole? Many medications save lives. Just ask someone's who can't afford their meds exactly how's unnecessary they are.
9
@Stevie ....Except when there essential.
6
@W.A. Spitzer I would add this: In the 1960s there were 650 drugs, now there are 2500 or so...I would say most doctors prescribe 5 or 6. At least, primarily. I do ask pharmacists for their take.
If you suspect a drug reaction, unless it's so serious that you need to call 911, your first call should probably be to the pharmacist. They are usually much more acquainted with the side effects and interactions of drugs than are doctors. I discovered this when I called our pharmacist after getting a full body rash and fever halfway through a course of sulfa drugs. He said the next time it could be anaphylaxis, and that I should never take such medications again.
9
19 years ago, I had a traumatic brain injury from a serious car accidents.After 2 years of therapy, a lot of help from doctors, therapists and neuropsychiatrist, I was a able to resume my life with some limitations. Last year I saw a specialist to deal with chronic sciatica. Despite a MRI showing a bulging disc in my lower back,many different therapists, the physiatrist decided that my brain was stuck in a pain feedback loop. He prescribed Gabapentin, I expressed concern because of my TBI, he dismissed it and gave me the prescription. I took one pill, had dizziness, was not able to function that day. I called his office reported my symptoms and said I was unable to tolerate the side effect. I was dismissed as a patient because I was non compliant. I later found a wonderful PT therapist who listened to me about how my body worked.
8
I’m surprised that Jane Brody, who writes extensively about health and health care, quit her drug cold turkey and without discussing whether she truly needed it or whether there was an alternative that did not have such severe side effects. This has happened to me many times and I’ve always had a conversation with my physician that resulted in a better understanding of the side effects if only that drug would work, or had an alternative prescribed. I developed double vision after taking Lamictal, and, having a history of eye muscle weakness, freaked out and my Opthalmologist came out of surgery to speak to me, and then I called my psychiatrist. I had no idea that double vision could happen from that drug. Another time, I was taking Cipro for asthmatic bronchitis, and while I was feeling physically better and had no fever, I literally felt delirious. I happened to be at an appointment with my psychiatrist while this was going on and he said that drug caused psychiatric episodes in people that required hospitalization and called my internist right away and they worked out an alternative. We have to advocate for ourselves if we are able : no one will do it for us.
5
@Susan Kaplan
Jane acknowledged what she did was not the right way to do it. BUT on a weekend night she is not going to GET a helpful conversation with her doctor and her symptoms were edging into suicidal.
So waiting till Monday was seemingly the lesser of two evils
4
Recommending that we consult with a pharmacist is a joke. Have you actually been in a Walgreens or CVS recently? The pharmacist is running around like a crazy person trying to do 20 things at once. A quick "do you have any questions" while backing up from window is perfunctory at best. And really, do I want to discuss my concerns in front of 50 people in line? It's a joke.
19
@BA--Try calling. It's always worked for me.
2
An important adverse effect not mentioned is that suddenly stopping a drug can produce withdrawal symptoms. In the case of anticonvulsants like Keppra (generic is levetiracetam), abrupt stoppage can lead to a withdrawal seizure, even in patients without seizure disorders. Anticonvulsants are widely used, usually off label, for other disorders, e.g. lamotrigine (Lamictal), divalproex (Depakote) and carbamazepine (Tegretol) for mood stabilization in bipolar disorder and topiramate (Topamax) for migraine prophylaxis (for which there is actually an FDA indication). Whether epileptic or not, I warn all my patients on these meds to never stop them suddenly.
7
I commented on Tuesday about a family member not being able to find a professional who can offer any real help in her attempt to withdrawal from medications. A psychiatrist prescribed a combination of Lamictal and Klonopin for anxiety and depression. She went off Lamictal and immediately experienced disturbing side effects, including: aphasia, depersonalization, sesensitization, tinnitus, and compromised executive functioning. This is some of the medical advice that she has received: change nothing for the time being, up the dosage of Klonopin, go on Prozac, go off Klonopin. These are not side effects but an altered life.
9
Stop advertising drugs on TV, so that there is less demand for newer medications that can still have unknown side effects, and are more expensive.
26
Anyone that has experience with Cenobamate please comment.
Thank you.
Doctors are not your best friends when it comes to medication side effects. Some years ago, I was put on a blood pressure medication. It caused a side effect called Angioedema. That's a life-threatening swelling which is, essentially an allergic response. In my case, because I'm fat already, no one noticed. However, when I finally got to the hospital, while BOTH my family doctor and the ER KNEW I had Angioedema, no one ever told me this. They simply took me off the medication and sent me home. There was ZERO aftercare provided. For the serious effects. They gaslighted me and left me to recover from MONTHS of serious illness, which had left me seriously weakened and bedridden. ALONE. I realized later, the reason they did this was that my doctor, whom I like quite a bit and generally trust, had almost killed me--wholly by accident--was being protected by the hospital group, at the expense of me, the patient, who's life and health has been COMPLETELY RUINED.
My brother took this same medication 7 years ago, samples he was given by a free clinic (because he was uninsured and couldn't have proper meds or care). Six months later he was dead. The autopsy said "congestive heart failure." Except he did HAVE congestive heart failure. Well... what happens when you have Angioedema and your body swells with water, and your BP remains uncontrolled bc the med isn't working and the clinic isn't monitoring you... you get CHF and you die. And yes, allergies run in families.
2+2 still 4.
5
Support organizations who fight for safer prescribing and access to trial data. RxISK AllTrials, Foundation for Excellence in Mental Health Care, Deprescribing.org. The pharmacist industry funds most drug research in this country and thus are primarily interested in profit not making you safe. Two examples - ie, the opioid crisis and SSRI and suicide. There are countless others. Data hidden in both cases. See the story of Restoring trial 329 and why it was written for the history of GSKs original ghostwritten study that manipulated data about suicide. Excellent article in BMJ this past week about these issues that fundamentally alter how medicine is practiced and your care. It’s serious stuff. For some excellent history read Pharmageddon by Dr. David Healy. An exceptionally well written book on these matters.
3
@JMorris sorry typo - pharmacy industry not pharmacist
Good article.
I'm on one of the drugs mentioned, Keppra.
It's a killer for me and makes me very tired as mentioned in the article.
2
Jane, Jane, how could you agree to a "just in case drug"? That's a "big" one.
Re: A neurologist had put me on the anticonvulsant drug Keppra as a preventive in case a seizure had caused an otherwise unexplained fall on my head and brief memory loss.
4
It is interesting to me
that you recognize the
terrible side effects of
the drugs that affected you
in light of your (years ago)
dismissal of concerns about
bisphosphonates (i.e. Fosomax
and Boniva). Perhaps you could
revisit that issue and examine
Prolia, the current bone drug
that is being prescribed.
Is it a questionable
drug— a bisphosphonate
that is dangerous
to discontinue once started?
Women trust your advice
and need to be informed.
7
Talk to your pharmacist people. They are chemist, have your list of drugs on file, and know and hear things doctors never do. Salespeople approach doctors to prescribe, not druggist. And take no pill without talking to them and doing your own research.
7
I'm a diabetic and my doctor prescribed a weekly shot. it worked great. THEN my insurance company decided that they were not going to cover my medication and they suggested a replacement. About a week or two into using the new med, I started having serious gastric distress. I was afraid to leave the house and the bathroom! At first, I thought it was a virus or perhaps food poisoning... but this kept up for weeks...
I went back to my doctor and he ran all kinds of tests and everything came out negative... Then we looked at my chart and realized the only thing that had changed was the medication. I read up on it, only to find many people were reporting similar problems!
The med was supposed to help with blood sugar control and help you lose weight... it was certainly doing that, but not exactly in the way that was intended. I reported the problems to my doctor (the problems finally went away when I stopped the meds) AND I reported it to the pharma company. Is there someone else I should report it to?
5
@Elisa if you reported it to the actual company that manufacturers the drug, they are obligated to follow up on this with you and FDA. Make sure they do. FAERS is the FDAs monitoring system. Reporting to drug company is better as the need to actually follow up.
1
@Elisa What medication / drug was this ?
1
I prescribed prescription drugs for patients throughout my career, with benefit to many but far from all patients. I learned very early on the value of deprescribing. As the cartoon says' "Doctor, I feel so much better since I stopped taking those medicines you prescribed!"
9
My mother just died of a Dress syndrome because of the Depakote ( Depakine). Stay away from it!
4
This article has certainly sparked a lively discussion, but many people are making unsubstantiated claims. "All medicines are bad." "We took my mom off her meds and now she's running marathons." Medicines save lives. But there are often side effects. Often the first thing a doctor will ask a patient when they are unwell, is "what medications are you taking?" Some comments said people were fools to trust their doctors. It is far more dangerous to trust Dr. Google. I am far more concerned with people's propensity to make up "facts". We are in a much worse place to spurn science. Read these comments. Conspiracy th theories are alive and well at the Nytimes.
6
my 21-year-old daughter and her husband were both given antidepressants by his doctor...she for postpartum depression, and he for anxiety...4 years later with 2 young children, my son in law committed suicide , even after complaining to his doctor about constant suicidal thoughts....my daughters personality changed after one year on antidepressants, from happy and sweet to bitter, lashing out and constant negativity....even 22 years later, i believe she has endured permanent brain damage and altering...she even has asked me many times, what's wrong with me, mom!
6
as a redhead, I've heard recently from a doc that I must experience every side effect of a drug. I hadn't heard this before and realized this is true!
1
@LG Redheads seem to have certain elements in their genetic makeup that affect their reactions to medication and other things, and you should certainly watch out for that. But I don't believe that what your doctor said should be taken as the literal truth. I've know redheads who have sensitivities to drugs but none of them has experienced every side effect of any drug. This is a good thing, because some drugs have dozens of side effects.
3
I’m a redhead and I certainly don’t experience every side effect of every medication I’ve ever been on. I have read some of us metabolize pain killers differently and after a surgery I found I have a crazy high tolerance to opiates and needed a lot more than the normal dose.
2
It is true! I am a redhead and cannot tolerate any medications. We also are very sensitive to anesthesia. There is a genetic component that makes us highly sensitive to all medications. I am suffering debilitating side effects from a migraine medication Aimovig that nearly killed me. It takes 5 months to leave my bloodstream. I’m currently on no medications waiting for my body to return to homeostasis and plan to keep it that way after this Aimovig nightmare.
What had been simply sinusitis was misdiagnosed by over-zealous pulmonologists as asthma worthy of bunker-busting asthma drugs. All of these drugs contained steroids which I discovered caused neurological symptoms of brain fog and fatigue bad enough to cause me to stop working.
When I reported these side effects, my very expensive pulmonologists would evince surprise, "After all, we give these to children." "Perhaps, children that were too young to articulate their victimization?" I replied. A Google search showed that indeed these steroids had anticholinergic effects or neurologic harm.
7
Before ever taking a new med, run it past a watchdog group's postings: like Best Pills, Worst Pills, or People's Pharmacy from NPR.
My husband wasn't taking seriously his lips swelling from taking an ACE inhibitor--not an anaphylactic reaction, but a drug reaction. When I finally got him into the ER, they read him the riot act about how the last person with that kind of reaction ended intubated for days to survive.
4
As I read the responses, there are clearly many folks dealing with this sort of issue. But a closer read reveals many complaints of side effects that are, to be polite, medically implausible or likely related to the underlying illness. Plus, in our current culture, claimed hypersensitivity to even inert ingredients must be addressed. How do MDs and pharmacists respond to such complaints? People complain about labels, but if companies don’t put a long list of such side effects on the label they are held liable, and if they list everything then there are complaints the label is too complex. And while I am a fan of your columns, anti-seizure meds should be tapered and not stopped abruptly, and sedation and fatigue are literally the most common (and well described) side effect of the drug you took - it seems a bit dramatic to argue that these were life-changing, don’t you think?
7
@LTJ If a person taking an anti-seizure medication finds after a few days that they can't get out of bed and are becoming comfortable with the idea of ending their life then I think it's entirely appropriate to consider these life-changing. Certainly a person who experienced those symptoms without having taken any medications would be encouraged to seek medical attention immediately. And even when experienced as side effects these symptoms might well warrant medical intervention.
There's nothing about a drug being commonly prescribed or its side effects being well documented that does anything to ameliorate the consequences of those side effects. Approved drugs are required to offer more in the way of benefits than risks but they are not required to be risk free. The side effects are documented precisely because they may be dangerous.
6
My 91 year old mother is bent from osteoporosis like a young sapling in the wind. Deathly afraid of the side effects from the old bone-building drugs, she stopped taking them 10 years ago. Her doctor’s advice that the benefits outweighed the risks was no match to the horror stories of fractured jaws and femurs that popped up across the internet. Had there been a nurse practitioner with the patience and time to walk her through those fears, she probably would likely be able to walk unassisted today and still live in her home. Instead, she prattles through her senior living complex on a rollator, knowing that the next fall (there have been over 15 in the last 6 years) could end her independence completely.
6
@Susan
My mother is 87 and took Fosamax for years. She has shrunk 6 inches and has compression fractures of her spine in addition to osteoarthritis of her knees and shoulders with significant pain and disability.
I am curious about the long term outcomes of women who took these osteoporosis drugs in the hopes of standing taller and maintaining bone density...
We should have a big enough cohort now to see what really happened long-term...
Until I see that type of study - I won't take them...
6
An interesting article. I always tell my GPs that I do my own research and the female GPs I've had always appreciated it. In Australia all prescribed drugs have an insert in the box listing the side effects but as someone on a lot of medications and who suffers a multitude of allergies & intolerances I have read those inserts. I can say that every oral medication lists the same minor & major side effects. That is ridiculous, it is not helping the patient it's only assisting the medical company in the event a patient sues.
I have taken myself off anti-cholesterol medication 4 times because of severe side effects, the worst was not listed at all, so I refuse to take any ever again.
I also took myself off a muscle relaxant when I realised it caused my sleep apnoea - it was relaxing my throat muscles too much. My GP hadn't read of that side effect but she believed me and looked for an alternative.
A drug I was on for a short time for osteoporosis did the opposite of what it was intended to do and caused a broken ankle; so I asked my Endo to put me back on Fosamax - and in time my bones thickened. My Endo apologised for believing what the drug rep had told him.
We all really need to know what it is we are taking and keep notes when placed on a new drug.
6
Life is complicated enough for doctors. Especially teachers ask lots of questions, but don't understand the answers. Just the word side-effects by itself causes confusion and doubts. By listening attentively, I have gained my doctor's trust - and he cares to explain. I had serious side-effects from a medicine I definitely want to to continue. It took 3 doctors to accept I was one of 50.000 who react in that way. So I just needed a very benign supplement to counter the side-effect. The matter of side-effects, in my opinion, is complicated. Then I got a medicine which most doctors have discontinued because of prevalent, serious side-effects. But it works better for me than the alternatives. Since I only use it occasionally, we continue it.
Maybe doctors should develop strategies for discussing the matter with patients?
1
Can we please talk about birth control pills? I've been prescribed them a few times like it's not a big deal. Each time, the effects were awful. The first time, it was fatigue, depression, loss of libido, and heart palpitations. The third and last time I tried them, I experienced extreme paranoia. I have some anxiety, but this was off the charts. I was convinced I was dying. I had to go to the doctor, where a patient NP had to convince me I probably was not... After a week of this, my husband begged me to get off the medication. Thank goodness, I did. I immediately felt fine and went on with my life.
I was raised (by doctors) to be skeptical of and careful with all medication, as it all entails some risk. When I lived in the US, I was surprised by the casual attitude to serious drugs, birth control included. It can't just have been me having these "side" effects that made my life much worse. I wonder how many women have a reduced quality of life and go through unnecessary suffering because they're taking these supposedly innocuous pills.
I wonder if hormonal birth control has become so politicised that women on the left, like me, are reluctant to criticise it and admit how bad it can be for us. There are excellent forms of birth control (condoms!) that don't require meds. Real empowerment means listening to how we feel, not what doctors or others are telling us is supposed to be right.
15
@Ani I had a complete personality change when I went on birth control pills. I turned from a serious, bookish, shy person to a giggly girly-girl in one month. Boyfriend loved it. I got off them right away and for life, even though it made not getting pregnant a much bigger hassle.
1
This article raises an important ingredient in the patient Doctor relationship.
The opinion and wishes of the patient are at least as important as the doctors.
More patients should speak up for themselves and do extensive research on medical web sites like Mayo Clinic.
After becoming an American expat in France seventeen years ago, I noticed that some of the male physicians were very sensitive to a male patient being assertive in questioning the doctor. One was very direct in challenging my right to question him.
I solved this problem by switching to female doctors, some of which are from other countries like Belgium, The Netherlands, or England.
I encourage all patients to speak up for themselves and remember that it is your life that is at stake.
8
@Michael Kittle: I totally agree. For their own sakes, patients need to educate themselves and speak up for themselves. In doing research on medications or other medical topics it is possible now to access much original medical literature. Articles that you may find on reliable medical sites that are intended for the general public often include links to papers that provide the supporting research. As a patient or caregiver you can go to the source. Most articles will have their main results stated clearly and concisely in an abstract or summary. In many cases it is not necessary to have medical training to appreciate the essence of what the authors are reporting. If you are interested in a particular topic (drug, disease, etc.) and are willing to look things up you can substantially enhance your understanding of a topic. You can learn enough to ask informed questions and follow more substantive answers. Your doctors may appreciate that and may be willing to listen to you more closely.
2
@Michael Kittle I have had doctors ask me, "Who went to medical school, you or me?" I feel like saying, "Who has to live with this decision, you or me?"
11
Most drugs are developed to target just one receptor, but nearly all have actions on at least one or two other receptors. Even if a drug could be developed that acted on only the target receptor, that receptor acts in a complex living system, and blocking the function of that one receptor (most drugs are antagonists) will have cascading effects in the system that are barely understood. Drug development is part science and part luck, hoping to find the molecule among many similar molecules that has the right combination of potency and safety.
Every person's body functions differently. An approved drug is at best a compromise, developed to work for most people with minimal side effects, and may not be tolerated by a (usually) small percentage of people. If you are taking a drug that has intolerable side effects, by all means, stop taking it, especially if there are other options.
7
Taking Ambien, I rewired TV,DVD,VCR, and Cable--middle of night, no memory.
Obviously nothing worked in am.
And I doubt my cat did it.
Weirdly enough I matched a lot of the colors.
13
@Ivy I took Ambien twice. Both times I found I had made phone calls in the early morning of which I had no memory. Same amnesia occurred with benzos. Cleaned the kitchen, vacuumed and did the laundry - no memory. Paid my mortgage twice one month because I didn't remember the first payment due to sleep aids.
I have resigned myself to melatonin and twice a month episodes of 36-48 hours without sleep, rather than risk driving or online shopping with no memory.
2
@T. Sullivan
At least you were productive! Maybe not so much the mortgage.
I have found a light box quite helpful.
Have been taking omeprazole for GERD for years and Lipitor (atorvastatin) for about a year.
I’ve just been notified that the results of my recent bloodwork shows that my liver enzymes are quite elevated. I was surprised as I’ve experienced no symptoms of liver damage.
Word if caution: looked up possible drug reactions and found that taking both omeprazole and Lipitor can increase blood levels and possible liver damage. My doctor never notified me of possible side effects, nor recommended the need to monitor blood levels.
7
@CWilmot. I suppose its a weird blessing I am allergic to all statins -- because another pernicious side effect of Omeprazole is that I developed iron deficiency anemia. I had been taking 2-3 a day (prescription) for several years and didn't understand that my symptoms -- extreme debilitating worsening fatigue, nearly daily migraines -- and a weird craving for ice was due to anemia. Other causes for my anemia, such as internal bleeding, or underlying blood disorder have been ruled out. GERD patients on PPIs should have their iron levels regularly checked. Don't assume the doctor is ordering it with your routine blood work. Mine sure wasn't. I ended up having to get six hospital based iron infusions -- a ton of invasive, unpleasant, expensive tests and am now anticipating surgery so I can be done with GERD and off Omeprazole.
3
Jane Brody’s advice to continue taking a medication even though you are convinced it is harmful to you is most unwise. I have learned through sad experience that in contemporary health care, when so many doctors have been forced by economic reality to join corporations that severely limit their face time with patients, my own intuition is often my best friend. And even so, I recently fell victim to a series of bad calls by practitioners who failed to take into account my age and health history, or were just plain wrong, and would never admit it. And try to reach your doctor after office hours or on a weekend!
12
@Janet van sickle Considering her admission that the side effect was so extreme she contemplated ending it all, the advice NOT to stop the drug in question immediately is insane. And you are living in the real world like the rest of us who know attempts to reach your doctor even during office hours can go nowhere but endless voicemail messages.
3
Fluroquinolones such as Cipro and levofloxacin are antibiotics frequently prescribed for infections that cause sometimes permanent side effects and disability. Worse mistake of my life was listening to my doctor who prescribed them for a simple UTI, but at the time I didn’t know any better, and thought my doctor did. I only took it for 4 days until a different doctor told me to stop immediately, he said the risk of continuing the full course was greater than stopping early. He was right, my infection cleared up almost immediately, but I still have side effects 4 months after taking the Cipro, including torn cartilage and leg pains that are at times disabling. There is a Facebook group with 10 thousand members who are looking for answers after being harmed by fluroquinolones. First do no harm, indeed.
18
@SAB On a runner's group, people who tore their hamstrings unexpectedly were discussing how many of them had been given Cipro or an equivalent. So often with these meds, we think that those huge side effects must be rare. . .but it's surprising to hear how many of these "worst case" scenarios happen.
Why is it again, we allow those big pharma reps and TV ads such leeway?
5
SAB. IV Levaquin and Twenty days of pills at home and some days my legs are so bad I struggle to make a flight of stairs
2
What's almost never discussed is the side effect of taking legitimate pain patients off of opioids because recreational drug users are abusing them and/or overdosing. This can destroy one's ability to function and thus their quality of life, but the brave new centurions of pain management have bought into the one-size-fits-all mentality of opioid madness -- particularly now that the lies about reefer madness have been widely debunked and it's being increasingly legalized.
18
They say there is a delay of 17 years between when research comes to an important conclusion and when that conclusion actually reaches the practice of medicine. So I try to find out what’s happening in terms of the research. For example, they know that inflammation is more destructive than high cholesterol, with the exception of hypercholesterolemia. The conclusion being that it is the anti-inflammatory action of statins that is preventing heart attacks. So don’t bother taking lipitor because it has no anti-inflammatory action. There is always so much they don’t really understand. And so therefore what we think has been “proven”, often hasn’t been proven at all. And how many doctors are reading the research to keep themselves up to date? I think they are kept “up to date” by pharmaceutical salesmen more often than not. Research paid for by pharmaceutical companies is of course biased. How could it not be? You don’t turn research over to companies who have a conflict of interest! But that is the situation. So it makes no sense to have blind trust in a medication prescribed to us. I was recently disabled, severely, by a low dose of statin. I took myself off of it and bingo, that muscle pain was gone and I could cook again. I didn’t wait to find a doctor who would believe me. It is my life choice! We need to study up on everything that ails us and also do the best we can on our own to heal ourselves with our lifestyle and the many wonderful harmless alternative practices.
13
Hypercholesterolemia = high cholesterol in the blood
And Lipitor is a statin
Sorry you had muscle aches on a statin, you could try a different one
My doctor put me on an antacid for months and I developed Candida (a yeast infection) throughout my gut from it. It took me a long time to figure out what was going on since the condition isn’t something many doctors know about or understand. Some of them will even say Candida in the gut isn’t a thing. (I’m general, I think microbiome science is in the dark ages compared to most medicine.)
But once I had that diagnosis and worked to get rid of it, I gradually got better and better and didn’t have any of the disgusting (and harmful) side effects of having a fungal infection growing out of control on my digestive tract. But it is absolutely horrifying to me that a doctor gave me that condition and never even mentioned it was a possibility I might develop it.
4
@L
was it an antacid or PPI or zantac which is over the counter but recalled because of where it was made.
Sure, you can remind people to notify their doctors when they experience serious side effects from prescriptions. But you don’t mention that those doctors will likely shrug off the reaction, or offer you another drug to counteract it. That has always been my experience.
I seem to be especially drug sensitive, and will more often that it experience side effects in the third tier of possibles (the group of symptoms listed under, “Notify your doctor immediately if you experience any of these symptoms”). After my primary care physician suggested that I take a drug to counteract the horrible side effects of another drug, I stopped accepting all of her suggestions for new prescriptions. I research it first.
Both my neurologist and rheumatologist have also been dismissive, regarding drug side effects. Very disrespectful and insulting. So, through all this, I have become quite the skeptic. I used to fill any prescription I was issued, and give it a fair chance. Now I tend to go home and research the drug before picking it up at the pharmacy. Often, I decide to not pick it up.
Earlier this year I was prescribed, by a physician filling in for my primary care doctor, a drug that was dangerously inappropriate for me (based on my medical history). I now trust no one when it comes to prescriptions. I think doctors are often too distracted and rushed to get it right.
26
@Passion for Peaches
Yes I do not bother to ask about side effects to doctor, I just look them up online on vetted sites and decide for myself.
Doctors do not recognize or know most, and as a Ph.D. with a great deal of chemistry and biologyI trust myself more than them.
4
@Passion for Peaches
I'm like this. Name a WEIRD side effect. It's hard to even find out about this stuff. You have to look it up yourself!
The funny thing about statistics is that even though MOST people fall in the middle of the bell curve, there will be those folks who are extreme outliers. You can be in the 2nd and 3rd standard deviation (and on over) where the med doesn't work at all. Or you can be on the other side of the distribution in the 5th standard deviation where you get WEIRD side effects.
Just because a side effect is rare, doesn't mean it doesn't happen. When you multiply 0.001% by the millions of people who take a med, that's LOTS of people who are going to experience something REALLY WEIRD. For your doctor to discount the weirdness or "not believe" you is just bad doctoring. It's a fundamental flaw in their understanding of the human body and how it works. Not to mention statistics. Doctors don't become doctors because they math all THAT well. If they did, they'd be engineers.
On the bright side, this article has made me look up the medication side effects of the meds I'm taking. They aren't pleasant.
2
Buyer beware. Always research the new Rx's side effects and how to take it. Drugs.com does an adequate job, I think, in that.
You can most always start with a quarter to a half a pill to see how bad the side effects are going to be.
I prefer to take generic drugs because they've been out on the market for years and most side effects are known. When a new drug is released, after Stage 3 clinical trials, you get the hype and you are the guinea pig (sometimes). It's only after Stage 4 (post -marketing stage) that the real side efffect profile is known.
Report all serious side effects or strange side effects to the FDA. You can do this as a consumer.
15
I strongly suggest you do your own research about drugs prescribed to you. I am suffering terribly for years now trying to heal my brain from the effects of benzodiazepines that were prescribed to me for decades. Doc kept increasing dosage when I complained of side effects that I didn’t even know were side effects. These anti-anxiety drugs should only be used short term. I had blind trust in my doctor which was a devastating mistake!
25
Me too, Mowgli. I took a benzodiazepine for decades, eventually becoming more and more anxious and ill. My doctors all wanted to up my dose, and add other medications. It was never suggested that my medication itself be the problem. I have been struggling with tapering off the medication for almost two years. It’s the hardest thing I’ve ever done.
6
Ann Green,
Thank you for your comment. You hang in there. We are living in a nightmare right now and just living one day at a time is the best we can do. Have faith we will recover. The body has an amazing healing capacity.
1
@Mowgli
I have been on benzos for years after getting hit by a car crossing the street in broad daylight along with my daughter. I have severe PTSD.
1
I have familial l hypercholesterolemia. After 1.5 months of injectable Repatha, I have essentially the same pain and fatigue that made me dysfunctional on steroids. Cholesterol! Which we create in our own bodies, and which in turn produces testosterone, estrogen, vitamin D, cortisol, and bile salts (to name a few). Messing with it is bound to put our well-being at risk. But hey! These meds reduce death, stroke, and heart attacks, all of which you can count. And you can't count quality of life. I do have a good doctor, however, who will allow me to choose without shame.
3
You might mention side effects arising from the “inactive” ingredients.
A huge number of pills contain corn starch and/or microcrystalline cellulose (also from corn). My wife has an acute corn intolerance, even a tiny amount of any corn product causes vomiting and stomach/intestinal pain. This is a fairly rare intolerance, maybe 1 person in 10,000.
The big problem is antibiotics. The govt in its wisdom has banned sale of pure antibiotics to compounding pharmacies (to prevent use in livestock?). This potentially a life-threatening problem for my wife.
4
@XBrit
the problem with antibs is that they are freely given to cows, pigs and chickens. that has caused resistance. and compounding pharmacies can also be bad. remember all of the people who died in MA.
Almost all medications that are seriously effective cause seriously unacceptable side effects. I took myself off antidepressants because I couldn't stand the lethargy and mood swings, not to mention the sexual side effects. This is frankly the nature of the beast, and looking for a miracle cure in pill form is a fool's errand. When you ingest a chemical you are causing a series of cascading changes to your brain and body chemistry that cannot be easily isolated.
14
Seizure drugs are the worst. They are designed to fundamentally change your brain chemistry and the side effects are so traumatizing that is really rather just have a seizure.
12
Without Keppra I would have focal and focal generalized seizures every 2 to 3 weeks. Two minutes of losing consciousness and falling no matter where I am and how I will be hurt or two minutes of being aware that I can’t breathe and panicky waiting for it to pass to gulp air. Always worrying the seizure will disturb my heart rhythm and my heart will fail. I prefer taking Keppra.
2
Most prescriptions are medically unnecessary; and their side effects are worse than the problem they supposedly treat.
9
@Stevie Sometimes, also, you end up with polypharmacy--what I call Whack-A-Mole. You get a side effect, need a drug to counter that, which also may have a side effect in your case, then you need...
Please read the book Deadly Medicines and Organized Crime: How big pharma corrupted health care by Peter Gotzsche.
It will make you think twice about taking any medicines at all.
7
@cathy ...From antibiotics, to blood pressure lowering medication, to the drugs that effectively treat HIV, compounds discovered and developed by pharmaceutical companies save millions of lives every year. And if you think any of it is easy, why don't you try and do it?
4
Americans, many, many Americans, are both enchanted and enslaved by drugs. They are advertised ad nauseam, creating demanding patients who saw X on TV or read about Y in a magazine and are urged to "ask your Dr." Costco sells Advil in 2 joined 500 tablet bottles... Many years ago I arrived in the Netherlands to start a job... On the first day there I had a terrible headache. With some difficulty, I found a "drogist". It was a shabby store that wasn't much bigger then a large walk-in closet. I asked the pharmacist for a bottle of aspirin. He politely informed me that aspirin was only sold in cardboard tubes of ten. I told to give me 10 tubes. He politely handed me a sack with the aspirin tube. I thanked him, he smiled politely and suggested that I take no more than two tablets and see a doctor if my headache didn't go away. It was good advice.
6
The instance of dementia is rapidly increasing in elderly Americans - exactly the same population which is constantly being fed a steadily increasing diet of pills. Is it just cynicism to feel maybe there's a connection?
19
The connection is old age. Dementia rates are actually declining when you adjust for the fact that people are living longer.
5
@Jane
Although PPIs have had an encouraging safety profile, recent studies regarding the long-term use of PPI medications have noted potential adverse effects, including risk of fractures, pneumonia, Clostridium difficile diarrhea, hypomagnesemia, vitamin B12 deficiency, chronic kidney disease, and dementia. I'd rather have Acid reflux.
2
@ExPatMX
PPIs are different and are not used for simple acid reflux. antacids can be used for acid reflux. I have been on a PPI for over 20 yrs since I have a history of stomach ulcers. three of them at once.
Dear Jane, you are a national treasure and I’m so sorry to hear about what you went through. I’m glad that you are OK. Thank you for sharing this and so many other lessons with your readers. We adore you
12
I struggle with and talk about this subject constantly. I am 75, and when I see a new doctor, I say my goal is to not do or take anything that will make me worse. Does that sound pessimistic? Believe me, I know what I am saying. I realize not everyone gets a side effect, much less every side effect on the list. If you have a bad bacterial (not viral) infection, you want the side effect of antibiotics--the infection going away (hopefully). But all these fancy new, spendy drugs are not that clearcut. Recently my three blood pressure drugs had to be readjusted--my heartbeat was 45 and my legs were swollen. This was after 20 yrs! Another atrial fib drug (thinner) combined with a detached retina to lift my retina completely off--4 surgeries, eye blind. Don't go by me--but do find a doctor you trust and do your own research.
18
@StarLawrence
As MPOA I worked constantly with my Mother's doctors to get her OFF meds. And the hospice doc would agree and yet try to put her on more.
FYI, anti psychotics are NOT recommended for dementia, black boxed too.
If can avoid, do so,
And a caregiver doesn't need to dose 20X a day, I just gradually reduced with advice from her primary and my Mom was actually better.
2
@Ivy Took care of Mom for 18 yrs (memory) and she was healthy as a cricket. But once in the ER, they prescribed Darvon for her and I asked, "Isn't that discontinued?" Thee reply was "Doctor would not give her something harmful." I gave Mom two Tylenol when we got home. (Yes, that one can be tricky, too.)
1
I strongly believe that patients need to be strong advocates for themselves when it comes to healthcare. Gone are the days when your physician is "God" and his/her recommendations are indisputable gospel. This said it is very dangerous to go on/off meds without telling your healthcare provider. For example, many people on anti-depressants arbitrarily decided that they don't need them anymore (even though it's the meds that make them feel that way). Cold stopping medications can be dangerous and lead to worsening of the treated condition if not weened off them over time under the guidance of a healthcare provider.
17
I agree that stopping antidepressants should be tapered slowly rather than abruptly but unfortunately rare is the doctor who understands just how slowly. And frequently Big Pharma doesn’t make the doses that allow a slow and safe taper.
2
Like 250,000,000 people around the world, I use homeopathy, and have for the past fifty years. It is very effective and very safe. I read a crazy article like this and thank god I was introduced to homeopathy at a very young age. What is the latest statistic on conventional medicine in this country? Over 150,000 people die every year from prescription drugs? What a horror show. Of course the FDA has recently deemed homeopathy "dangerous" and is on course to put homeopaths and other alternative medical practitioners out of business. No one dies from homeopathy. The only danger is to pharma's bottom line.
8
@Alex "Like cures like", dilution increases potency, disease caused by miasms" Homeopathy is all pseudoscience. You may be thinking of alternative medicine, which is using herbs, etc. to treat ailments. But that is the basis of all medicine, and we've improved upon that.
17
@Dez 250,000,000 people must be wrong! Conventional medicine is the only way! Or as Aldous Huxley said, "Medical science has made such tremendous progress that there is hardly a healthy human left."
When nothing else helped, I started taking a monoamine oxidase inhibitor (MAOI), a rarely-prescribed medication used to treat severe depression. Because it can have devastating and potentially deadly side effects when combined with many drugs or foods, I always wear a medical bracelet with the drug name and a warning to check for contraindications in case I am in an accident and need medical assistance. For example epinephrine, commonly used in many anesthetics, would cause my blood pressure to rise precipitously, potentially resulting in a fatal stroke. I advise anyone taking medication longterm to wear a necklace, bracelet or other ID letting emergency services know. If you are in an accident and can’t speak for yourself, EMTs are trained to look for medical ID jewelry in case special precautions need to be taken. The ID bracelet saved my life once, and having one might save yours.
12
@Peeka Boo
The only one I would consider is "Do Not Transport" because ambulance charges have wrecked me.
When I was taking an MAOI for major depression a few years ago I needed some dental work. I told the dentist I was taking this medication and that I would not be able to tolerate epinephrine in the lidocaine for local anesthesia. He used it anyway and I fainted in the chair. When I was revived his comment was, “it was just a little!”
1
I have been on five different medications for MS over the 22 years since my diagnosis. Of those I’ve spent about 15 taking NO meds at all. Every medication produced a side effect that I simply could not tolerate. I just quit the 5th med in August. At around the same time, my neurologist abruptly retired and I haven’t yet found a new one. MRIs are showing disease progression; but the meds had so significantly reduced my quality of life. What to do... I still have two bottles of the last drug that I have not opened, which are no use to me and which my insurance paid $12,000 each for. (I was not able to stop Walgreens’ shipment of the second bottle in time.) No idea what to do with them.
9
@Now what
I don't know, is there a counter-side effect med?
After my parent died I spent an hour putting used and unused, not opened, drugs into the CVS mailbox, sounded like playing a slot machine.
Not even hospice would take the unopened morphine back, wish I had kept it.
CVS ate it though.
Perhaps though you could try to cancel the insurance charge? A pipe dream.
Grapefruit interferes with the metabolism of certain statins. The drug levels remain high. The statin still lowers the LDL but it's like taking a higher dose of the statin, which may cause more side effects. It does not reduce the statin effectiveness.
4
A reminder that all medical professionals are expected to have 24/7 coverage for emergent medical problems. If it is a true life or death emergency, then 9-1-1 is the way to go. Otherwise, you should call the physicians office and use the answering service to reach the on-call physician for advice.
8
Staying away from any kind of 'Big Pharma' means to me that I can remain free and clear of becoming a insurance-medical industry science experiment.
From what I can find out, most drugs aren't tested on women, and too often, MDs prescribe whatever has been sold to them by a non-MD drug-company rep.
My health is too important for me to turn myself over to such an un-trustworthy paradigm.
21
@ETBeMe Well, aren't you lucky to be so healthy that you need no meds! Big Pharma keeps me alive and I'm very grateful for that.
Yes, I have had adverse reactions to various drugs. I know my body and I know when something is wrong after starting a new drug. I usually email my doctor but I do quite taking it until he can prescribe a different drug.
There can be side effects to anything - even eating a candy bar. What's important is to know ones own body, have a physician one trusts and who listens, and take needed meds as directed.
24
Anyone who blindly trusts their doctor regarding medical advice is an idiot. You know your own body and state of health better than anyone. Start off with the premise that you are more qualified than your doctor in determining what’s best for your health.
I do listen to a doctor’s rationale, but refuse to follow the doctor’s advice until I’ve done my own research. I get second and even third opinions. I read medical articles. I read the comments the readers post. I follow links to the actual research papers.
First, it’s important to realize that research studies (supposedly) focus on determining what’s best based on the average people’s stated measures, the largest cluster of study participants. The advice given may (and only may) be best for that group, but not for the outliers. I’ve found, more often than not, that I’m an outlier.
Second, many research projects find what their backers want them to find, only to be found out decades later to be misleading or false in their results. The profit motive often outweighs peoples’ health. Then, there are also the “researchers” who strive to find “breakthroughs” not to further our health, but to further their own careers.
I’m admittedly cynical. But, I do feel this is an accurate depiction of the state of affairs in the US medical community today.
We won’t have a medical community we can trust until we have a medical community devoid of the profit motive. Caveat emptor.
9
I don’t think you know what you are talking about. I had a kidney transplant and have to take immunosuppressants. Or i die. That simple.
Glad you have the choice not to take medications. Some of us don’t have a choice.
5
There is virtually no real research on drug interactions. With the proliferation of prescriptions (the average senior now takes5 prescription medications) this is a rapidly increasing risk to health.
17
@Deirdre Seim
Your comment is patently untrue. A quick PubMed (the National Library of Medicine index) shows over 10,000 journal articles, and most of the drug-drug interaction research is not published, but is listed in the FDA-approved labeling for each medication. As a physician with over 3 decades' experience in pharmaceutical development, I have been involved in many studies, both laboratory and clinical, assessing potential drug-drug and drug-other substance (for example, grapefruit juice) interactions.
Not every potential interaction is studied, and unfortunately not every physician carefully reads the labeling. And in some instances there are unfortunate surprises.
Many people would rather take a pill or get a shot than live a healthy lifestyle which would enable them to avoid many medications. And yes, it's often easier for a physician to write a prescription than to try to teach patients the virtues of healthy living.
Pharmaceuticals when used judiciously can greatly improve quality and duration of life. When used carelessly, they can cause more problems than they solve. Read the patient labeling, and make sure your doctor reads the professional label as well.
In developing a new drug, far more effort is put into safety than efficacy assessment. Take advantage of that.
17
@Terry Plasse
"In developing a new drug, far more effort is put into safety than efficacy assessment."
I'm sure this is true but the question is how much of this medication actually ends up in your system. The concept of bioavailability doesn't seem to be very well understood by some.
For an oral med, the actual blood level may be determined by how it's processed in the liver (which can change over time.) In the case of an injected med the ultimate trough level at an agreed-upon common point (i.e. two weeks) will depend on a variety of factors relating to body type and other things.
One can design a drug with safety in mind, but if you're not paying attention to how much actually ends up in the patient's system, the safety numbers go out the window.
Ultimately, it comes down to a doctor and patient monitoring things like weight loss, fatigue and other adverse indications. Drug trials are starting points and these doses presumably work for most people. But not for all and doctors need to remember that we're talking about statistical studies. Nobody who deals with statistics would claim that their models (which is what dosing recommendations are) can be applied to 100% of the population.
2
I am a science professor. We spend a lot of time in my capstone class covering tests of drug safety and efficacy.
To test efficacy, researchers seek to reject the null hypothesis to reject a null hypothesis regarding a known dependent variable. Comfidence on tests of efficacy is statistically straightforward,
To test safety, researchers must guess at likely interactions or side effects to test for them. The test is intended to show confidence that the null hypothesis should not be rejected. This test is statistically more complicated and comfidence in findings will be, statistically limited.
We should expect to find new contraindications for new drugs as their market shares increase.
2
It's disheartening to read that so many people struggle with complications of their medication. Many complain that M.D.s have strong ties to big pharma and reach for their prescription pad in place of suggesting lifestyle changes. On the flip side, complimentary and alternative medicine is somewhat classified as pseudoscience. Realistically, naturopathic physicians, chiropractors, herbologists, acupuncturists, and even massage therapists are the folks who will suggest nutritional and lifestyle adjustments. They are willing to work with your doctor to provide the best outcome possible, which is why it is classified as complimentary medicine. There are frauds in every profession, but if you don't exclusively want a prescription treatment, maybe it's worth your time to seek help from a different type of healthcare provider.
20
@Kitty
It’s hard to think of worse advice than the suggestion that a person who doesn’t like their doctor’s recommendation might do better to seek out someone whose treatments aren’t based in science. Better advice would be that a person should discuss with their doctor evidence-based treatment options or to get a second opinion from another MD. We can’t always get what we want, and there are afflictions that require prescription treatment whether we like it or not.
7
@Kitty Here here! Conventional doctors are good people caught up in a terribly corrupt system. As such, avoid them like the plague. Alternative medicine has worked wonders for me and virtually all of my friends and family (especially homeopathy, acupuncture, reiki, nutritionists, as well as other forms of naturopathy). Alternative medicine is safe, effective, and much, much cheaper, which is why the FDA is declaring war. Their bottom line is under attack. I expect we will see a whole bunch of legislation outlawing these "dangerous" alternatives. Meanwhile 150,000 die every year from prescription meds, 200,000 from medical malpractice. Whatever.
2
@Kitty I'm fortunate that my current & previous GPs believe in me taking several vitamin supplements because regular blood tests repeatedly show I do not absorb vitamins from my food, caused by my various health issues & being coeliac. My new Endo is also a nutritionist and she and my Immunologist prescribe the taking of many vitamins.
1
I have Petit Mal epilepsy and have been on MANY medications for thirty years. Some with better success than others. But all with negative side effects, from hyperplasia to somnolence, to depression, etc. I’m currently on a trial drug, Cenobamate, just certified by the FDA. It works well, but seems to flatten everything. Blunting they call it sometimes. It knocks me out as well. Suicidal thoughts are rampant. Try to find a psychiatrist with a neurological speciality or understanding that accepts insurance. That’s difficult. Anyone with any experience/ knowledge re Cenobamate out there? Mine is mixed with Zonisamide. Thanks.
4
@db2 Have you considered diet? Ketogenic dietary therapy is now being used for the treatment in adults with epilepsy. It's not just for kids anymore. Hop on over to the charliefoundation.org and check out the work of Dr Eric Kossof out of Johns hopkins. I have seizures too, been on 8 or 9 meds over the last 20 years or so. They either made me comotose or worse or didn't work. i am nearly 3 years seizure free on diet. This isn't hocus pocus. It's legit and medically researched and works about as often as meds.
4
@Alk
not all adults can go on keto diet. it actually works better in children. people who have high chol. cannot be on it because of high fats.
2
Mixing alcohol and narcotics is notorious becase both drugs depress the central nervous system, so there's a higher risk of overdose among patients who abuse drugs or alcohol. For those who don't abuse, two units of ethanol combined with small amounts of morphine (or tramadol or T3s) might be the ticket.
As a palliative-care cancer patient, however, I was intrigued by older studies from the 1950s and 1960s research in multi drug pain treatments. As I knew from my rugby days, alcohol, for example, is a good analgesic for somatic pain, torn ligament, scrapes and bruises, sprains, etc. Opioids are better for visceral pain. When you have both it makes sense to combine/mix. Done carefully, multiple pain meds in moderation result in less grogginess and better quality of life.
It's not likely you'll hear GPs telling patients to take half as many oxycontin but add a Budweiser and a doobie, but that's exactly what many of us terminal cancer patients do.
22
My 93 year old mother in law was seriously ill and like many folks of that age was taking an array of drugs, some for this and some for that. She became so sick that the doctor suggested hospice be contacted and sent her home - presumably to die.
Her children had a meeting an they decided to take away all of her drugs and let nature take her course. Guess what. She lived and improved. This was several months ago. One drug dose was tweaked and administered again.
It seems there isn't much known about the complicated side effects with multiple, powerful drugs being administered.
69
@SBJim
Smart children!
Well done.
7
@SBJim I see older people taking 12-13 drugs and think, this just cannot be good.
7
@SBJim
They DON'T actually do ANY research on drugs being administered TOGETHER. It's not mandated. They study ONLY drugs being administered once at a time.
On the one have, it's kind of impossible to study the bazillions of meds in combination. On the other, drug interaction are serious and miserable and kill people.
3
It’s unfortunate that this article barely mentions that over the counter supplements are barely regulated or monitored, many of their interactions are unknown, most have no or dubious proven benefits to justify their side effects and risks, and unlike prescription medicines, people have no one to guide or advise them.
24
@Jerome Graber I can't believe that you are insulting the good-hearted people who run companies that source their organic, GMO-free, gluten-free, wellness-y ingredients from the farms where deep and powerful respect is showered upon the ancient medicinal plants that boost your immune system and do all sorts of other wonderful things to your body that can't be proven and if they were they'd be regulated (or should be) like any other drug.
These pious people want nothing other than to provide consumers with a rich milieu of alternative agents. They have no interest in profit at all and it is crude of you to suggest that they either provide none of what they claim on the bottle, use something different altogether, or simply use rice or wheat.
I'm always stunned by people who say "heck no" when I ask if they'd buy pills from a street vendor in China or Mexico. That's exactly what they're doing when buying OTC supplements.
https://www.nytimes.com/2013/11/05/science/herbal-supplements-are-often-not-what-they-seem.html
6
@Nicholas Browning
not all adults who take supplements can afford to go to whole foods or health food stores. they are prohibitively expensive.
1
Pharmacist here. I would like to note, we are and should always be the first place to ask any questions about your drug or side effects you may experience upon starting a drug regimen. We are not simply insurance-processing-pill-counting machines, we counsel patients as well, and are usually more readily available than your doctors office. Our expertise is in pharmacy, and we can advise you on a personal basis what drug interactions or side effects you may have. I’m not sure why the author only adds that as an aside 4-5 paragraphs into her own advice.
113
Kmac
Good notation by you for those not aware that pharmacists do more than hand out meds. I have consulted with my pharmacist numerous times, not necessarily about prescription meds, but also about over- the- counter items. Always get helpful and good advice, and they are there when you need them rather than trying to get through to a doctor.
15
@Kmac ,
Thirty years ago a doctor told me to always ask a pharmacist about medications and side effects. He looked at me and said, "I only had one course in pharmacology. Those guys majored in it." Since then, I have followed that advice.
46
@Kmac
as a nurse practitioner i agree that pharmacists are an excellent resource for both clinicians and patients
14
#1- Well established each of us reacts differently to drugs
#2-When drugs tested an dosage is chosen that hopefully will do the job but no side effects, Many could do better with less and some need more in real life. Should start low and add to dosage if needed.
#3- Many drugs given fo too long, drugs not reevaluated at certain times to see if still needed.
#4-Many providers not really familiar with the drugs or side effects
#5- No price controls so drugs vary in price from one store to another. Store allowed to set what ever price they want.
4
I took Lyrica for many yeas because of severe pain caused by a crushed pudendal nerve. This drug cannot be taken by diabetics because it interferes with the metabolism of insulin.
One morning I skipped breakfast. At 1PM I walked into a super market to buy a sandwich to eat. As I walked into the store my surroundings became distorted, my heart started hammering, letters looked like gibberish. I had a feeling that something awful was going to happen. I looked at the distorted faces of other shoppers and rejected calling out to them. I dragged my cart to the side of an Aisle, put my head down and said to myself over and over, “you will not faint.”
The next thing I knew I was lying on the floor watching my feet involuntarily wobbling back and forth. I had a grand mal seizure due to low blood sugar caused by the Lyrica. Low blood sugar is an acknowledged rare side effect. However, they don’t tell you that Lyrica can lower your blood sugar to the point where you have a grand mal seizure.
14
@Bathsheba Robie Lyrica is poison. I had to wean myself off of it, as the side effects were worse than what the drug was supposed to treat....Which it didn't. Weaning was the worst experience of my life....My Dr had no clue it would be as difficult as it was....For she had been educated by Pfizer about Lyrica, and had never bothered to do any actual research. I got through weaning by water titration method. Took months.
3
@Bathsheba Robie
Tracy: Lyrica is not poison. I suffer from pudendal neuralgia, a crushed pudendal nerve caused by a double dose of medical malpractice. This damaged nerve has sent out disabling pain signals for eight years. Doctors refuse to prescribe opioids for pain. They prefer nerve soothers like Lyrica or Gabapentin. These work, but the likelihood of side effects is a function off the daily dosage and the time spent on the drug. I was a rare side effect waiting to happen.
After the seizure, I was finally put on opioids and am doing fine. If not for the opioid hysteria, my pain would have been treated appropriately from the beginning. Also, I stopped taking Lyrica with no withdrawal symptoms.
The thing that gets me is no matter what medication someone is taking and they do the right thing and notify their Dr. when suffering side effects, first thing that comes out of their mouth is " I don't think that symptom is being caused by the medication". It's happened to me also. My Dr. even told me first time I was prescribed a statin "my wife and I take it, you might feel a little leg pain but it's not that bad". I went home looked up the script online, read the patient reviews and threw it in the garbage. You couldn't pay me to take statin and a few other meds as well.
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@ShirleyW Had the same reaction to an older water pill, Lasix...It had a black box warning (a super bad side effect) and three pages of things that "could" occur...I said nope. The doctor said, it's been around a while, you'll be OK. Still no.
2
After reading an article, probably here, about the incidence of depression as a side effect of commonly prescribed meds--the more meds you take with this as a listed side effect, the greater the incidence of it--I made a spread sheet with my 5 meds across the top, and the side effects listed along the right. I summed the number of checkmarks for each side effect.
Four drugs listed abnormal heartbeat. Hmm. I have an abnormal heartbeat.
Three had "special care in elderly, over 60 or 65." (That isn't elderly any more, is it?)
I recommend doing this. It's worth having it in the knowledge base when somebody starts talking about adding a new drug into our regime.
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@JohnH
I did this, too. Amazing the bad side effects the drugs have, and seeing them doubled by two different drugs is frightening.
Doctors blow off hair loss, cognitive issues, spiraling down from dizziness, etc., just to name a few.
It's very rare, say the doctors when asked about side effects.
The same things should apply to supplements. For more than a year I have dealt with mysterious rashes and consulted with multiple doctors. Turmeric, which I took for arthritic thumbs, was one of several culprits.
Just because a drug is available does not make it mandatory.
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@SchnauzerMom
Herbalist here. Turmeric (Curcuma longa) can have side effects: Contact dermatitis has been reported in sensitive persons after topical applications of turmeric products. Notwithstanding, turmeric has been generally well tolerated in human studies at doses up to 8 grams daily. The AHPA has classified this herb with the highest of safety ratings: Safety Class:1, Interaction Class: A - No known drug and supplement interactions.
Regarding your adverse event, I would 1) not take the product topically, and 2) determine if the manufacturer has quality (GMP) standards. There are many reputable herbal manufacturers in the marketplace, alas there are also bad actors who deal in adulterated ingredients. Asking an herbalist which products are superior would be advisable.
Best of luck.
7
@SchnauzerMom My previous Endo recommended krill oil capsules for arthritis & muscle pains so I took it and it was 12 months before it was found I now have a serious allergy to shell fish, which I didn't have when taking fish oil caps. The reaction was in the form of a belt rash of hives which was 6 inches wide and eventually spread around my chest from side to side and was on my body for 9 months. (It was agonizingly itchy) I didn't find that side effect written anywhere.
Individual physicians no doubt attempt to follow the dictates of their “do no harm” maxim.
But they are part and parcel of a profit-driven Big Pharma industry, which has far less concern with doing no harm, except to its bottom line of course.
This, while patients continually clamor for magical cures & comforts from their physician’s bag of potions, as they are nowadays spurred by such drugs being advertised like candy on TV and elsewhere.
My personal maxim is to do no harm to myself by minimizing the amount of prescription & over the counter drugs I take to a bare minimum (except for vitamins, minerals & herbs)
--which for me, in my seventies, happily translates to zero.
18
@Stan Chaz ...."My personal maxim is to do no harm to myself by minimizing the amount of prescription & over the counter drugs I take to a bare minimum (except for vitamins, minerals & herbs)"....You really ought to include vitamins, minerals, and herbs. The thing is that if something has a real biological effect it will necessarily also have side effects. Now those side effects might not occur in everyone or all the time and they might not be serious, but anything that has a real biological activity will have side effects.
1
@W.A. Spitzer How is that minimizing?
I recall taking a strong painkiller and anti-inflamatories for severe back pain, then not too long afterwards having a mild asthma attack. I used my inhaler and wow - what a drug interaction. I was driving at the time and it was night. The lights were suddenly super intense, distances confusing, and the lights, oh wow, the lights, every light has these long light strings leading up to my car, all vivid colors, sparkly and absolutely mesmerizing. Time lost all meaning and I could not look away from the lights! Amazing reaction but not what you want when you are driving.
6
Years ago, my primary care doctor prescribed Qvar, an inhaler that treats asthma. Apparently, it lowered bacterial resistance to the point that I developed chronic bronchitis during three straight winters. When I finally put two and two together, I went cold-turkey. Subsequently, a specialist prescribed Dulera, another inhaler. Within ten days, my legs were cramping to the point I couldn't walk any distance. As a result, I remain leery of taking any new medications and always request the lowest possible dose.
13
Dear Jane ...
I had exactly the same experience .. . two unexplained falls (quite serious ... one caused detached retinas, one just flat on my face) over a 3-year period. Not so much a memory gap but absolutely no recollection of falling or ever breaking my fall.
I spent 8 days living in a padded room in a hospital as they tried to induce seizure activity. Nothing showed up.
They ruled out cardiac issues after much testing.
I was put on Keppra which nearly killed me and all my relationships with my out-of-control emotional outbursts and serious depression. I quit! Cold turkey.
I then was put on Trileptal and I gratefully feel more like myself. The weird thing about this is my neurologist said there is no way of knowing what the "therapeutic dose is for someone my age (you and I are about the same) because they simply don't do studies on women my age." That is curious and not so comforting. We will only know if my very low dose is too low if I ever again have a seizure.
Epilepsy is such a mystery. I wonder wonder wonder if that is truly my diagnosis. Do you?
13
@Nancy Novack did they tell you it's called keppra rage. Yep. It's got a name. I am sorry you had to go through that.
3
@Nancy Novack You are not alone with these issues. This is one reason why we should just take any medication without learning about just what you (at your doc's advice). It is also true that some of us need medication, and should not just cease taking it. It is a conundrum.
Your best bet is to work with a doc who s_ecialises iin this area. I do not know if you were told about the significant side effects of Ke__ra. It can cause serious side effects. One of these is violent behavior. Best of luck to you.
"On Monday I called the neurologist’s office and was appropriately chastised for stopping the drug without his O.K., but at least I lived to tell the tale."
Would the neurologist have been reachable?
What did the doctor say after the appointment about your discontinuing the med?
e
7
There’s much more to this: inactive ingredients which differ between brand and generics and among different companies’ genetics. Pharmacy Benefit Managers witch heroics based on price. Quality control, especially overseas where many generics and ingredients are made is lacking, as are FDA inspections. Inactive ingredients can cause all sorts of reactions, e.g. GI meds can contain significant amounts of lactose, which can result in a polypharmacy problem.
I no longer take generics. Crestor generics rosuvstatin acted like a stimulant, destroying my sleep. Brand costs a fortune but is my only option.
The FDA does not evaluate generics for efficacy, just equivalency of active ingredients.
And no, I won’t take that hot new drug unless my life depends upon it. Read up on Cipro and the other quinones black box warnings as a cautionary tale.
33
@A. ' Brand costs a fortune but is my only option."
My experience with genetic version of Synthroid was the same. My doctor thought I was being ridiculous and gave the brand prescription under protest.
7
@A. You should have your pharmacy see if they can find the brand manufacturer's "generic" version. Some brand name manufacturers also repackage the exact same tablets through their generic arm. So, you're paying the generic price but getting the same tablets. I work as a pharmacy tech and do this frequently for patients. (I did it earlier today for a woman because her brand name seizure med would have cost her over $1000.)
As long as the technician or pharmacist is knowledgeable, they should be able to help you.
2
@MarieDB
there was a few yrs ago when Synthroid was not being made properly. I had to get my sister to take my dad off of it. hormones almost always have to be given brand name. such as female hormones, testosterone and insulins.
1
Statins for lowering cholesterol have very dangerous side effects. After the doctor insisted my husband begin the regime even though his LDL and HDL levels were excellent he first reported mental fogginess about a month in....Then about three months in muscular pain, which became excruciating. This adverse reaction to muscular tissue and kidney function is well documented. Grateful I recognized and he did not have any long term damage.
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@Marie Walsh I stopped taking statins from the muscle pain in my legs. Walking 2 blocks was excruciating. I wasn't told this could happen. and when I told the doctor it was happening, she suggested I had heard about those symptoms in advance and it became self fulfilling!!
Thanks for nothing lol.
4
@Marie Walsh the worst statin I took caused me to walk like a robot and despite 18 months of physio I did not improve. My then GP insisted it wasn't the drug but I stopped it anyway and 3 months later I could walk normally and physio not required. I had been so bad we spent $8000 modifying our house.
Other statins I took years earlier caused headaches, vagueness & fogginess & muscle aches so I ceased each of them myself .
Wow, the timing of this article could not be better. My mom was recently put on Lithium for bipolar and depression and was doing great for a while, but then began having chest pains so severe that she had to go to the ER. Since her doctor's next appointment is in March, she decided to stop taking the meds which is NOT the right option for someone suffering bipolar, but she already has heart problems and can't take the chest pain. She's going to the ER today as her bipolar symptoms have gotten to the point that she is no longer able to think clearly. Praying for everyone who is going through something similar and in a potential life or death situation due to the failures of our healthcare system.
10
@Alyssa, Please make sure your mother is not taking NSAIDs or blood pressure meds while taking lithium. These significantly raise the level of lithium in the blood possibly causing an adverse reaction. Also, the dose should be adjusted downward for elderly persons. Lithium is a life saver for many but it needs to be used properly.
7
@Alyssa, Make sure your mother is not taking NSAIDS or blood pressure meds with lithium. Elderly persons need to be on a much lower dose of lithium because the body clears it mor slowly and the drug builds up over time. It is a good drug with minimal side effects when used properly.
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@Alyssa
It can damage the kidneys also and the damage is irreparable.
1
Okay, so how can we monitor data that’s collected on our prescription drugs after they are marketed? I have to take a form of fosamax, and would love to see actual statistics on occurrences over the long term of scary side effects as well as on whether it’s effective on actually preventing fractures vs changing DEXA scan results (what’s being measured.) My doc doesn’t have time to keep up on all this stuff but I do.
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@Flânuese
I read that taking fosamax or other osteoporosis medications is like erecting scaffolding around a crumbling building. The exterior bone is strong but not the interior.
8
I stopped taking fossamax after developing pain in my thighs. The doctor said he had never heard of that reaction. Couple years after I stopped it, I read that fossamsx can actually increase probability of femur fractures.
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@Flânuese
Please research Fosamax, if you haven't already. Biphosphonates like Fosamax have been linked to jaw osteonecrosis, esophageal damage and other health issues. There have been lawsuits against manufacturer.
4
I am a retired ER doc, having practiced for 31 years after residency training. I worked in semi rural hospitals as an employed physician, with no incentive to inflate charges or to upcode. During my career I saw about 20 patients a shift, so about 2000 a year. The last few years we used the Epic charting system,which had built in algorithms to caution a doctor about possible interactions. Generally we would already know about these, but sometimes we would learn about a fairly obscure reaction that we needed to consider.
I do not recognize these authoritarian doctors who disregarded patients reports of ill effects of their newly prescribed medicines. I did not work with doctors like that. We always cautioned patients to call back if there was a problem, and we all shared ( and charted) the follow up advice. If a patient had recently been started on a new med, we would look very carefully at that medicine and its possible side effects.
I do recognize the many patients who think doctors as a category are out to mistreat or misdiagnose them, with the complicity of « Big Pharma ». Most of us are skeptics about the Pharma hard sell, and try to get objective information from reliable sources like the Médical Letter or web sites like Mayo Clinic or Up-to-Date.
So in summary, I think physicians are aware of the problems Ms Brody cites and try to address them.
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@jaime106 I pay extra to have a concierge doctor. I do this because it guarantees me a doctor who actually cares about me and will advocate for me when I can't do it for myself.
My former doctors were decent people but they didn't have the time to do a proper diagnosis. Thus, they missed my throat cancer which was rapidly doing its damage. I don't think they were evil, just rushed and being rushed, they were careless.
6
@jaime106
You sound like a doctor I'd like to have on my team!
1
Kudos to you, Jane Brody, for your self-disclosures. Your frank report enables others to share their own issues. You have given a new meaning to "personal health."
10
Take care of yourself, do no harm to yourself by running to a doctor with every little complaint. It is possible to become overmedicated while looking for the
6
Finally!!! Someone wrote about this. Big Pharma and the doctors are clueless when it comes to a drug's side effects. Over the years I have stopped taking dozens of meds because of side effects. and the doctors always state it isn't the drug! The only success I have had is with supplements. Few side effects but I wish more of them were investigated. on exception has been CBD oil. Took the lowest dose from a verified company. Diarrhea, could not sleep, and I developed uncontrollable shaking in my hands.
8
@US mentor Generalized and overstated. You are painting with a very broad brush.
8
I have high cholesterol as did both parents who lived well into their 90s. Ten years ago, at age 65, my doctor put me on a statin. Within days, I lived in a fog, then came awful pains in my legs. After 3 weeks,I was so weak, I could not get out of bed without assistance. I called my doctor 4 times during those weeks and was told to take CoQ10 and that my body would acclimate. Over the next several weeks, he prescribed three different statins, all with the same result. I felt helpless and despondent. In a moment of clarity, I realized I didn't need permission to stop taking a drug. When I informed him, my doctor suggested I find another doctor. Ten years later, I have lowered my cholesterol somewhat by taking Red Yeast Rice & CoQ10. My new doctor listens to and respects me.
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@JMR My cholesterol levels are within normal limits but I had a stent inserted ten years ago for a partial blockage. When I turned 80 my cardiologist said I should be taking a statin to lower my cholesterol even further. I asked for the "most gentle" statin he could prescribe, and I took the minimum dose only 3 times a week. The first month I felt some pains in my hands but felt I could manage that for the expected benefit. Sometime in the third month I found myself sitting in my recliner after breakfast, utterly fatigued, not from exercise but from a lack of desire or energy to do anything at all. This lassitude had built up over the previous several weeks. In the next week I tapered off the statin and the following week I was back to my normal energetic and ebullient self. As my GP once said to me, "If the drug makes you feel like you're dead already, what's the point?"
36
@JMR I have had high cholesterol for many years, and although the doctors have tried to put me on various statins, I have had the same allergic reaction to all of them. After a couple of weeks on any statin drug, swallowing becomes more and more difficult and it feels as though my throat is closing. Eventually I consulted with a naturopath -- and he put me on a product called Bioliptrol, in which the main ingredient was Red Rice Yeast and secondarily, Gugul. I took it for a few weeks and thought I had finally found something that would work for me. But then, the swallowing problem started to happen again. At this point, I learned that Red Rice yeast is what statin medicines are derived from.
2
Add niacin to those otc meds.
I recently heard about some kind of genetic testing which can (in some cases) help predict side effects. The specific example involved the large number of different antidepressant drugs used for treating depression and anxiety. Some of these have terrible side effects in some people. Psychiatrists can use genetic testing to predict the likelihood of side effects for individual patients. I'm sure the predictions are very limited, but they are better than nothing.
12
@Robert
I got the genetic testing done by a company called Genesight. I was skeptical, but my physician insisted. They offered a sliding scale payment that cost $80 to $400 maximum, and somehow, after my insurance company denied paying (it wasn't covered to begin with) they were able to negotiate and Blue Cross payed the full $6000.
The precision of the test results were invaluable and pointed to a rare variation of a gene that made me unable to metabolize a commonly prescibed class of medications.
I hope everyone will have access to this technology. It would prevent much of the suffering mentioned in this article and likely save a lot of money too.
2
I'm sorry that Ms. Brody had this side effect. Its not fair after all the good she has done with her column! Most prescriptions for Keppra are for 500mg twice per day. As a neurologist, I have learned that about 10% of people can't tolerate that dose, but most can tolerate 250mg once or twice per day, which will at least offer some protection, and they may be able to tolerate more after 3-6 months.
5
I am slowly trying to go off Keppra. I am diagnosed with JME epilepsy, but my last grand mal seizure was 41 years ago. My neurologist feels that my normal EEG is a good sign. I can live with occasional myoclonics, which are now one every few months. I will have to stop driving for three months once I am off. I am 71 and had digestive side effects from the Keppra, as well as sleepiness. I feel the effects on a small older woman are not very well known. It feels like going down on the Keppra dose is as difficult as going up. When I lower the dose, I.become argumentative. As we know, Keppra can be known for causing aggression (“Kepp Rage), but the possible difficulty of withdrawing seems not to be addressed.
3
Not mentioned in this article is the “dangerous” over the counter drug Acetaminophen (Tylenol) which is the leading cause of acute liver failure. Even though the elderly are most likely to rely on Acetaminophen, Medicare refuses to cover routine / regular blood tests for early diagnosis of impending liver problems.
23
And Tylenol doesn’t even work.
I have never had any pain relief from acetaminophen ever.
A placebo that can destroy the liver.
2
I am a scientist who has published research in rheumatoid arthritis, type 2 diabetes, HIV, just to name a few. I had always considered people who complained of side effects as wimps. However, after having side effects from several different drugs myself, I have concluded this is real.
It's important to understand that responses to drugs actually represent a distribution of responses. In rheumatoid arthritis, regardless of the mechanism of action of the therapeutic agent, fully 1/3 of patients don't respond. When developing new pharmaceuticals and treating patients, we investigate and treat to the median. Rarely are considerations of such things as race as a variable even included in random control trials. And, rarely do individual patients represent the median or mean response. Biology is complex and by affecting one protein in a pathway, rarely does it only affect that pathway. Consequently, one must expect that response to any drug may have side effects and these side effects may be severe.
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@Scott Eastman
What you're saying is true but there are several problems with it.
1) Given the financial constraints in the medical sector and the norm of 15-minute appts, more than a few doctors are not reading what you publish. Therefore, they may not even know whether a patient fits the "patient characteristics" researchers use, which vary widely anyway.
2) A lot of practioners are unfamiliar with the basics of stats and so are unfamiliar with the concepts being used (for example, is a number anywhere in the normal distribution normal equally likely to be the same as the mean, or does the likelihood of abnormality increase towards the upper and lower tails?)
3) It's relatively easy to chase down problems by testing either the level of a medication in serum, or by testing one or more biomarker levels to see if someone is "in the normal population." But given the financial issues mentioned in #1, testing is generally frowned upon. Instead, the "answer" is that if you've got condition XXX, you take ABC amount of medication regardless of what it's doing to you.
Unfortunately, there is often only one recommended dosing level (even when it's based on weight it doesn't take account of BMI, so fat is treated like muscle, and inflammatory load and metabolism are basically being ignored.)
Down the road, I'm sure people will get a lot smarter and decisions will be based on various biomarkers, cytokines, etc. It will be awhile, though.
14
@Paul B As an underweight 85 year old, I try to take the children's version of anything, like Advil, Ayr, neosporin, etc. and ask doctors to start with the lowest possible dose of a medication. Unfortunately, as you say, with some medications there is only one level of dosage, the same for someone like me as for a 250 pound 6 foot 7 30 year old.
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@MarieDB
Use a doctor that has a relationship with a compounding pharmacy.
2
My son has autism so I spend a lot of time on message boards frequented by parents with kids with ADHD, depression, aggression, and the like. It's truly disturbing to read accounts of parents wondering about terrible side-effects of antipsychotics, anti-depressants, and stimulants on their kids. I feel really sorry for those children. I'm sure the parents are well meaning, but more often than not, they admit they haven't even tried other approaches like therapy. We dealt with serious aggression with my son, which responded really well to therapy. I have no doubt that if our first stop had been a psychiatrist, he would be on an anti-psychotic now, instead of the happy, better-adjusted kid he is after evidence-based therapy.
15
One problem is that many drugs are now prescribed with the intention that patients should take them for life (even though the drug may have been tested only in short-term use.) So the chance of side effects is greatly increased, including long-term side effects that may be unknown. If a patient wants to discontinue the drug (often a difficult process) they have to wing it on their own, because their doctor will not support them or advise in the process ... wanting to discontinue makes them "noncompliant" and the doctor will no longer want to deal with them.
35
@teal If one has a chronic condition, then drugs for it will have to be taken "for life"! All prescriptions require a new one on an annual basis so at that check-up, a good physician will go over ones drugs, see if they appear to be doing what they are supposed to do, discuss any adverse reactions and any new, better drugs that may have become available. They will also work with you if there is prescription insurance to be sure the drugs they prescribe are on the formulary, and if not, prescribe a substitute.
I take a lot of different medicines for my asthma and for my bronchiectasis and GERD. I need all of them to stay alive and will continue to need them until I die.
The key is a good physician. If one is not happy with theirs, find another one! We're not "assigned" doctors here in the US - we can pretty much choose who we want to treat us. There are very good, caring doctors out there. If yours is not, get a new one and quit tarring the entire medical profession and Big Phama with the same brush.
5
I'm sure that anyone with even minimal exposure to prescription drugs has had to deal with side effects. In my experience this has been made much worse by the prescribing doctors who routinely deny that the side effect is being caused by the drug. This has happened to me even after pointing out that the drug's own insert specifically identifies that particular problem. Doctors very often seem to take it personally if a drug they prescribed causes problems- to the extent of denying it entirely. They all have their favorite drugs for any particular diagnosis and they are loath to accept that there is a problem with "their" drug.
My blood sugar shot up after being prescribed a drug to the point where I was diagnosed with diabetes. The drug's warnings contained this: "May bring on latent diabetes". Two doctors refused to accept that it was the drug. Months later I stopped the drug and the "diabetes" disappeared immediately. No comment at all from the doctor. I was lucky there- no permanent damage. I was not so lucky on several other occasions, sustaining problems that have caused permanent damage that will affect the rest of my life. Doctors I've talked to about this typically have a blind spot when it comes to side effects. Fear of lawsuits? Personal pride? Maybe they just prefer to believe those free-lunch sales reps that those drugs have "practically no side effects". I don't know.
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You can worry about known side-effects but the most dangerous problems are drug - drug interactions. Some of these are known and a computer will flag them (if the patient has revealed all of the medications/supplements taken). Many are mostly likely unknown.
Numerous patients are on long lists of medications. I have no idea how they manage to take them all. My message to patients: avoid any unnecessary Rxs and all supplements. The fewer medicines taken, the healthier you'll be (obviously some cannot be stopped but perhaps can be taken prn).
16
As a chronic migraine patient, I’ve become accustomed to being prescribed off label medications, such as beta and calcium channel blockers. Epilepsy medications are also prescribed frequently, including Keppra.
I, too, hated Keppra. It made me extremely angry. I remember standing at a mid-town intersection when a bike messenger ran over an elderly woman’s feet. I had to restrain myself from knocking that guy off his bike.
No more Keppra for me!
8
@Banjokatt When I first went on Topomax I got the memory loss. At night I put a tax bill in my purse to remind me that during the day I needed to file our homestead exemption. During the day I would see it and wonder why it was there. At night I would remember again. But normally organized, I never got the exemption filled. That at least cost us $10,000.
8
@Mary Lou Brandes I also have the memory loss and the annoying "forgetting the word" from Topomax. I used to have the best memory, now nada. Drives me crazy!!
4
@Stacy Glickman Word aphasia from Topomax is persistent and frustrating. One's friends and family learn to be patient while I'm searching for a word and eventually must use a phrase or sentence instead.
Because my mother has Alzheimer's, I'm terrified that I, too, will be a victim of that, but because of Topomax, I'm never sure if my memory and other cognitive problems are drug or dementia related and just hope that if I do develop dementia, my spouse or doctor will notice the difference.
i have localized seizure activity and neuro pain. my neurologist put me on ever Med. he could think of, then i saw a pain specialist, who i knew well. he said "i will not keep you on anything that does not help significantly" nothing did help but the side effects i went through were endless. the worst was Gabapentin. asthenia, somnolence, anorexia, and violent dreams. after 2 wks i titrated myself off them.
i feel just those 2 wks changed my positivity to Neg.
i feel sorry for teens who are put on Meds and cannot verbalize the changes taking place, not listened to, and are kept on them regardless. Teenage angst and violent dreams, not a good combination.
17
@scootter1956
Gabapentin is the drug of choice for people with neuropathic pain. People in severe pain have the choice of Gabapentin with its side effects, or nothing. This is because of the medical profession’s fear of opioids. I had to fall down and shatter a wrist because of Gabapentin before they put me on a small dose of opioids.
2
Gabapentin/Neutontin does not work for neuropathic pain. Pfizer hid the studies showing it doesn’t work and still promoted its off-label use to doctors. The lies were discovered back in 2004 I believe (really you can google this) and the company was fined millions—which was a drop in the bucket compared to their profits.
Pfizer admitted the hid the studies showing it didn’t work.
Here’s what I find galling: the drug company lied and hid studies showing the drug didn’t work. It was all over the news.
And yet the doctors kept right on prescribing it for pain and still prescribe it for pain.
1
Though stopping your medicine cold turkey worked for you, there are so many medicines that -- if one doesn't wean off slowly-- there can be huge problems: effexor, most of the benzos, I'm sure many others. Though you write, "Don't follow my example," you don't explain why. // I found, caring for elderly motherly, that she often needed only the smallest dose of a med (antidepressant) to be effective-- any more and she would just be sleeping. Luckily I worked with a neuropsychiatrist who asked me pay careful attention to help figure out proper dosages.
13
Quitting Keppra cold-turkey can be very dangerous or even life threatening to those who take it for epilepsy.
6
It makes no sense to me that medications are prescribed with a "One Size Fits All" attitude, whether it be instructions for colonoscopy prep or medications like those mentioned in this article. No wonder patients have serious and adverse reactions!
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@Patty Peter
Amen to this!
And the 30-40 y/o gastro guy and the 20-something nurses and assistants refuse to acknowledge this, or make any adjustments.
4
The irony to take medications that are supposed to improve your current condition may result in the occurrence of a horrible side effect that can pile on more headaches. Completely worth it to live a healthy lifestyle to hopefully diminish any medication intake and use medications on a very last resort. Because these side effects are almost experimental you don't know until you try them.
6
The trouble with reading the package's list of side effects is that they give you no information about how common or severe each one is. The long and undifferentiated list has two implications: One is that few people read them at all or pay attention when they are read on TV. The other is that the potentially severe side effects are lost within those that might cause dandruff. It's hard not to suspect that both are intentional.
18
Go to Drugs.com and look up the medication in question. If you scroll down through the list of side effects eventually you will get to a list of side effects and reported incidence, which would help you gauge your risk.
12
@Caligirl Thanks for this. It is an improvement on the usual list. You do have to scroll pretty far into the site to get specific incidence numbers, like 10 percent had nausea, but it is helpful. Ideally, I think, the site should compare the risks in a narrative, something like, "meloxicam works better than aspirin as an anti-inflamatory, but its side-effect risks are about twice as large...." [note I just made this up; I'm not saying I know this]. But maybe that's too risky for a medical professional to say when her lawyer reads it.
1
Interesting. I did the same thing with another anti-seizure drug, but I did it over a six month period. I was being treated for trigeminal neuralgia but the drug side effects were horrendous. Whatever was impinging on the nerve must have gone away because I have been fine for over 10 years. The Neurologist, of course, fired me as a patient.
13
My mother's assisted living facility served grapefruit juice on their breakfast menu. I asked the only LPN on duty how many residents took medication for high blood pressure. Her response? Most of them.
The residents are allowed to order anything on the menu. Assisted living means more freedom than a NH, even with dementia. My mother greeted me with a glass of grapefruit juice in her hand. "This is so refreshing" was what she said.
"I need to speak with the director" is what I said.
51
@Cathy I was served, in the hospital, coffee and oatmeal as my first meal after surgery to repair a perforated stomach ulcer, despite being on a medically documented low fiber / low acid diet.
7
@H i hope you are healed now in spite of this.
which hospital?
@Cathy oh god.
My understanding is pomegranate juice enhances rather than weakens the effect of statins.
1
I was recently given a medication to treat GERD--a condition I didn't even know I had. I had gone in to be treated for a chronic cough. The medicine helped; my cough was gone, but now I have tinnitus. I've stopped taking the drug and I stopped being stupid with my eating habits. I eat a lighter supper earlier and don't drink alcohol before going to bed. The cough is gone but the tinnitus remains. I wish I had been given a choice; preventing GERD would have been better than treating it.
27
@Northshore Many drugs cause tinnitus. They are called ototoxic drugs. Some cause permanent damage. Not everyone who takes an ototoxic drug will get tinnitus. Susceptibility drug induced tinnitus probably runs in families. Unfortunately, it’s difficult to determine whether a drug is ototoxic If you just rely on the drug insert. I don’t know whether your tinnitus is permanent, but I would not take any other drugs until I could confirm that they are not ototoxic. Aspirin is very ototoxic.
5
"The rule of thumb in medicine — first, do no harm"
Big Pharma doesn't care about harm, only profits. Drugs are pushed onto the market with the blessing of the FDA who believes Big Pharma's studies that the drugs are effective and harmless.
Many drugs, including cancer drugs, are not effective.
https://www.bloomberg.com/news/articles/2019-05-30/too-many-medicines-simply-don-t-work
24
@Jacquie
Thank you posting this informative link.
I was on mefloquine for malaria prevention when I went to Kenya and Tanzania for safari. I had just about every reaction listed and ended up in a hospital in Nairobi. The doctor stepped out of the room and shortly came back with a print-out. He asked, "and have you started to hallucinate yet?". Luckily no. IV fluids and a medication change , a day of safari lost. I suppose it could have been worse.
5
Not a word about tapering off, esp psychotropics? I realize Ms. Brody is not a medical professional, so she can't advise readers to taper off prescription drugs w/o medical supervision. But how about an aside in the obligatory self-admonishment?
I'd hope Ms. Brody's readers are already aware of side-effects. Maybe Part II will be about the synergistic effects of drugs interacting with other drugs.
Best advice is prob that better may be the enemy of good, and treat disease, not lab values.
7
Despite the fact that my A1C level was borderline, my former primary care provider prescribed Metformin, a diabetes drug. Unfortunately for me, this prescription occurred when I had largely recovered from a surgery so I was becoming more active and also had started eating better (i.e., less ice creme). Long story short, the Metformin gave me severe gastric distress (every time I ate food, I would go to the bathroom afterwards). This caused extreme weakness since food was not staying in my body long enough to be of use. I also was sleeping a lot. I finally was able to keep a sleep log and discovered I was sleeping 14 hours a day! I immediately stopped taking the Metformin and was significantly more alert in less than 24 hours. However, it took more than six months for my GI problems to clear. It was absolutely disgusting that my former doctor prescribed this medication without monitoring my sugar levels and ignoring my statements that I was suffering severe GI problems.
I changed primary care doctors and with the same A1C levels, my new doctor did not prescribe any diabetes medications. However, since I can actually leave my house because I no longer have significant gastric distress or severe tiredness, my fitness levels have actually improved. My weight and blood pressure levels are down, and my blood sugar levels are dropping. So in summary, Metformin was making my physical condition worse instead of helping me.
26
Physicians don’t necessarily keep track of all the various drug interactions. That’s why I keep all my prescriptions at one pharmacy. I think pharmacists access databases that warn them about potential problems, but only if they know everything you are taking. As a side note, I have to put in a good word for Keppra. Yes, it is a strong drug with side effects, but as a person with epilepsy, Keppra has given me my life back.
14
@mwm What I have to say is that meds may effect everyone differently, especially neurologically, we don't all have the same IQ, right? Something is responsible for that and for the FDA to act like a study will mean anything is just funny to me. We don't even know the myriad of ways physiologies can be different let alone the myriad of ways they can be effected by substances. Are we all guinea pigs? My experiences point to the gifted being more vulnerable.
1
Our current knowledge of how many, particularly antipsychotic, anti-epileptic, and antidepressant, drugs work on the nervous system is not very good. And these strong drugs should not be taken without compelling reasons. In my case, the question is whether or not I am willing to endure Keppra‘s side effects (sleeping too much, occasional depression) in order to take a bath (with uncontrolled epilepsy the risk of drowning goes way up), drive again (no drivers license for people with uncontrolled epilepsy) or even go up and down stairs freely (I know someone who had a seizure on the stairs and woke up in the hospital with a concussion from falling down the stairs. I wonder if this possibility is why the neurologist prescribed Keppra for Ms. Brody.) For me, the drug’s side effects are worth it. But others may think differently.
4
@Mary Lou Brandes Also very few drugs are prescribed by body size. Why is that?
What I have always found interesting is how much more goes into a medication than just the medication and whatever stabilizers are needed to keep it usable. I am prone to getting headaches from food coloring of any sort unless it's vegetable food coloring. It's why I no longer bother to eat candy corn, drink certain juices or sodas, or buy any item from the supermarket without reading the label. I avoid any item with artificial flavoring or coloring. Yet many medications, especially the ones prescribed for allergies, have artificial coloring added to them. In other words, for me, and for many others, some side effects are guaranteed. In my case, severe and nauseating headaches.
I'd appreciate it if the pharmaceutical industry could explain why those colorings are necessary other than to tell the dosages apart or which pill is which. It seems to me that they could find a better way to color their pills.
40
@hen3ry
If any of your medications are in capsules, your pharmacist can order them from a compounding pharmacy without the colors you cannot tolerate. Or you can break open the capsules and consume the little beads in some creative way. I know, because I have a food-dye problem as well.
12
@flipturn Thank you for sharing this information. I'll keep it in mind.
@hen3ry
You are welcome. I forgot to mention that you might have to have the script rewritten. Ask your doctor or pharmacist, whomever you see first.
My psychiatrist at MGH misdiagnosed me, dismissed complaints about side effects, and the worse I felt, the more drugs he pressured me to take. At one point, while undergoing treatment for breast cancer and for several years after, he had me on ativan, abilify, lamictal, and trazodone. I gained 50 lbs., developed hypertension, tardive dyskenisia, and depression so severe, I wanted to die. It required two hospitalizations to get me off the drugs. Now I'm off all psychiatric meds. I've dropped 25 lbs, and am clear-headed and fully alive again - working, sleeping well, exercising, and engaged in activities I'd always enjoyed. I'm a medical researcher and thought my knowledge would protect me from this kind of thing. It didn't. Patients need to question clinical decisions and beware of any doctor who overmedicates. If your complaints are dismissed, don't second-guess yourself. Get a referral to another doctor right away.
143
@rb ditto for me, I'm trained in chemistry.
3
@rb Might want to file a complaint about your psychiatrist. Could save other patients' lives.
@rb oh god I can so relate to this cocktail of post breast cancer treatment medications. I am so glad you are doing better and have minimized these meds. I know several of these side effects. to your health.
4
Disclosures, disclosures, disclosures.
It's time for patients to know about their medications in more ways than ever before. Why? Because the risk factors come in all "flavors": known and unknown, predictable and unpredictable, life-threatening and mild, etc.
And no one is exempt.
7
One small point: grapefruit actually increases the level of statins in the bloodstream, causing them to be more, not less effective.
3
Increasing levels of statins in your blood stream is not always a good thing. I’ve just been notified I need to stop taking Lipitor because my liver enzymes are elevated. Apparently, in some people, combining Lipitor and omeprazole, which I take for GERD, can increase blood levels and possible liver damage.
An important question is how compliant are neurologists prescribing Keppra to fulfill their obligation to report adverse events among their patients receiving Keppra to FDA, and what are FDA criteria for communicating this information to prescribing physicians?
Age, gender, pre-existing conditions, medications and genetic profiles can all play roles in predicting who is most likely to have adverse reactions to newly started medications.
Is this important reporting and tracking system flawed?
10
@AGoldstein hi, yes it is. Currently, provider reporting is largely voluntary and, as one physician friend of mine put it- if a patient comes to her with any side effects, she has no interest in reporting anything already on the drug label or not life-threatening...she also has no time since providers are constantly under the gun to meet patient quotas, limiting abilities to have more thoughtful drug-monitoring practices or patient counseling conversations.
7
As a physician, I try to keep in mind that "drugs are simple but people are complex".
Of necessity, most drugs are approved based on clinical trials in groups of patients over a relatively short period of time. The focus is efficacy and adverse events, while dutifully recorded, are generally not possible to fully capture and understand before approval.
Thus, when prescribing a drug for an individual patient, one must be prepared for adverse events to occur - even if they are not listed in the package insert.
Each patient receiving a drug for the first time is participating in an "n-of-1" clinical trial. That means that a patient may have to stop a drug because they cannot tolerate its effects.
If a drug treatment is so critical that the patient can't risk stopping the drug without medical evaluation, then the physician must make this clear to the patient AND advise her or him what to do in case of a severe side effect, possibly related to the drug.
It's also important for the patient to be informed how to contact the physician or his or her coverage "out of hours".
There is no place for "chastising" in such instances.
38
@Stephen Rinsler I'm curious, given your role as a physician...in the case of "advise her or him what to do in the case of a severe side effect, possibly related to the drug", have you made direct reports to the FDA (or) advised your patients to make those reports?
5
@Stephen Rinsler
Excellent advice. I wish every physician had the same attitude and knowledge about meds.
Another thing to remember about drug trials is that, as in any statistical analysis, patients are being selected based on some set of criteria. If your situation does not fall within those parameters, changes in dosing might need to be considered. As an example, obesity may affect metabolism of a drug. So does inflammatory load.
Unfortunately, there simply isn't enough money to do studies on multiple groups with varying levels of BMI and/or inflammatory load (or any of the other multitude of things that may differ amongst patients.)
It's quite easy to check a patient's "characteristics" against those of the study participants and see if there's a discrepancy. And, if needed, even check the drug levels ending up in the patient.
1
@Paul B
Forgot to add that when I said "inflammatory load" I meant low inflammatory load. This means that if you are a super exerciser (particularly cardio which has the effect of lowering inflammatory load) meds could affect you differently. (And someone who is obese would have high inflammatory load which would be one reason obesity could alter their metabolism of a med.)
2
Actually it is generally a good idea to consult with your doctor before going off meds, especially if you've been taking them a,long time. Many medications can have withdrawal effects that you need to take into account. One of these is Gabapentin (Neurontin), it can have very unpleasant symptoms if you stop suddenly, However I agree that its a good idea to take stock of medications from time,to time and get off whatever you don't really need. Just be careful how you do it.
13
@Catherine I agree that one should not go cold turkey. When I had a benign tumor (meningioma) removed I too was on Kepra and Trileptal. The side effects were intolerable. I had never experience a seizure but the doctors wanted to exercise an abundance of caution. I felt like I was walking knee deep in quicksand. Then I experienced skin rashes. I told the doctors to tapper me off as I knew one should never just stop abruptly taking these medications. The deep fatigue was also a nasty side effect. We need to be our own advocates and tell the doctors when to tapper us off. I was experiencing a toxic reaction. Now I am drug free and my energy has returned to normal. My neurosurgeon, Dr. Steven Daniel Chang , is outstanding.
3
In withdrawing from amitriptyline, I was a physical and mental wreck. It has been over six months and I am still not back to normal and wonder if I ever will be. No doctor I have had knows anything about how to withdraw from antidepressants or sleep medications. I searched long and hard to find any information on this subject on the internet and finally discovered a few articles stating that withdrawal should be no more than 5 or 10% per week. So basically I have been on my own to address this debilitating problem.
You will not find this information in the pharmacy info sheet. I have read that addicts to opiates discover the same lack of information from doctors and pharmacists.
This is a serious problem which must be addressed by the drug companies and governments must make such disclosure mandatory in all caps if necessary on info inserts.
All the above is of course a different, no less serious problem, than the problems of serious side effects of drug interactions that doctors seem unaware of or unwilling to spend the time on.
45
@valerie
This is my experience too. After Kaiser dropped the sleep med I was taking I had severe withdrawal symptoms. The doc denied this was possible and was no help.
I finally went (and paid for) to a private physician who said that rapid withdrawal of the med was dangerous, possibly fatal. He created a schedule to wean me. It took months, and I’m still not back to normal.
2
@valerie Facebook has a group called Benzo Buddies. The group doesn’t just deal with withdrawal from benzodiazepines, but also psychiatric drugs.
@valerie OMG!.. so sorry to hear about your problem with amitriptyline!!
It was Rx'd for me as a long term "pain med". I literally lost my mind and was hospitalized and recovered. The side effect it gave me? No REM sleep ever.
My Doctor said "phooey" over and over. HORRIBLE!!!
After 30 days, I became highly paranoid and then finally completely delusional and it took my boss and the HR guy to literally URGED me to go to the hospital.
1
Regrettably, it is sometimes not enough to advise one's health care providers about one's drug allergies. I have an allergy to aspirin and NSAID's. A true allergy - if I ingest them these medications cause anaphylaxis.
Once I went in to the hospital for a surgical procedure, and made sure to wear an aspirin/NSAID allergy bracelet (the plastic ones given at the hospital) at all times.
The day after my surgery, as I was being weaned off the stronger pain meds, the medical staff (unbeknownst to me of course) gave me an NSAID despite the allergy references in my medical records, and the allergy bracelet I was wearing. I had an episode of anaphylaxis within a half hour of having ingested the meds. Luckily I was in a hospital so I received all the emergency protocols for this reaction.
But it was then that I realized that many of us are at the mercy of certain health care providers who really do not care about our well-being, despite their chosen profession.
75
@DB Cooper Unless you are unconscious, ask about every tablet or infusion you receive. Do not fear insulting the meds nurse, but do not trust for one minute that the system is protecting you.
It isn't about whether they care about you or not. They system is broken.
23
Cathy
Excellent advice, Cathy. During a recent hospitalization, I questioned every pill brought to me and it turned out two of the meds were for conditions that I don't have so I didn't take them. Long story about the hospitalist system, specialists called, none of whom know you from Adam but all, after spending 10-15 minutes with you, adding their little notes to patient records. Yes, the system is truly broken.
10
@Kate I have been hospitalized an unfortunate number of times. Each time, I had to have insulin shots--what is IN those IVs? I do not have diabetes or am I prediabetic.
Ms. Brody's cautionary tale is a welcome addition to this health section, urging readers to be more proactive when deciding whether to start or continue taking recommended drugs. Writing about medical problems from the patient's point of view offers a useful perspective.
26
It is necessary to be proactive when using pharmaceuticals or following medical advice. I research every treatment my doctors prescribe in order to safely use them.
Lithium prescribed for bipolar disorder is widely disparaged for causing kidney damage but that is only half the story.
The damage is nearly always caused by two types of drug interaction. NSAIDs and blood pressure medicines both cause a significant rise in the lithium level.
I was not told by my doctor to avoid these, and even had one practitioner offer a diuretic to be taken concurrently with the lithium.
Furthermore, the therapeutic effect of lithium is enhanced by the natural form of folate. The administration of folate with lithium could lower the therapeutic “window”, making lower doses more effective.
We need to avail ourselves of the wealth of online information concerning nutrition and lifestyle changes that can protect us from sickness and empower us to make informed decisions.
My favorite resource for good in depth medical information is NIH/NCBI website.
57
This column has stirred up my deep concerns about medications being handed out as if from a checklist as a one size fits all. Doctors should not only check the side effects and caution patients, but also administer to that individual patient. A 5' woman should, for example, not be given as high a dose of Prednisone as a 6' man. And yet this happens all the time providing greater chances of overdosing people.
My second concern is to note that with the rise of superbugs, the medications required could be as deadly a cocktail as the disease. Are we prepared as a society to address these dangers and protect patients? We the patients need our own patient advocates to protect us.
51
@Rebecca yes and that is why I started a nonprofit to do just that. It's time to address medication injuries and deaths as a major public health issue because these events are not only occurring in patients who take opioids.
7
@Rebecca Prednisone is commonly administered based on weight (and then rounded to the appropriated reasonable tablet size for oral administration) where I live. The dosing depends on the severity of your concern, of course.
But yes, I have increased respect for specialists who have recognized my size and subsequent vulnerability to side effects at dosing intended for 145/185 lb adults. Sometimes I respond to peds doses ;-).
2
Perhaps you should write a column about those of us who suffer extremely rare side effects and the physicians who prescribe the drugs refuse to believe our experiences.
143
@runner in New Jersey After an experience with Levoflaxin (cipro), I have learned to write down on my own record allergies to medications. Otherwise the drugs were being repeatedly prescribed. Be in control of your own chart.
61
@runner in New Jersey
This has been the experience of a family member, and it has been quite a nightmare. They don’t teach anything like this in medical/masters’ of nursing/psychology school. Caveat emptor: you’re on your own when you try to deal with the consequences of prescription drugs.
28
@Rebecca Cipro is a 'Black Box' antibiotic that should only be used as a last resort. My urologist wanted to give me cipro for a routine bladder exam, and I told him flatly 'no'.
29
You said: “go to the nearest emergency room or call 9-1-1 »
Now who can afford that?
86
@Thomas
Jane Brody also said "weeks before I could undergo a three-day brain wave study to check for seizure activity. "
Can't afford that either.
5
@Thomas "Now who can afford that?"
Exactly my thoughts.
When I read that sentence in Ms Brody's piece I anticipated the agony that I'd feel in that situation, wondering what the billing and the "surprise billing" would be for such a visit; whether or not it'd be 'out-of-network' (recently the health insurance thorugh my employer totally eliminated out of network coverage) , etc..
6
@Thomas
Universal health care is the answer. Vote accordingly!
4
Dr. O'Shea mentions the increased risk of suicidal thoughts among young people from antidepressants. What he fails to mention that when prescriptions for these drugs declined for this group as the result of these concerns, the number of actual suicides among them increased.
As to those sleep medications and memory loss, it's worth noting that this exceedingly rare except when people took them with alcohol which is an absolute no-no.
If you want scary side-effects how about the diabetes medication that can cause hypoglycemia resulting in loss of consciousness and even seizures or anti-hypertension medications that can also cause people to collapse.
And if you want even bigger side-effects, how about those from the antibiotics that have resulted in drug resistant bacteria that have killed more people in a year than all the psychotropics over all the years combined.
It would seem that the only meds Dr. O'Shea follows are the psychotropic ones which The Times continuously slams.
16
Antidepressants can cause drastic worsening of depressive symptoms in adults, too- as well as “restless leg syndrome”, an agitated condition called serotonin syndrome, and an agitated state called akathisia. They disorganize sleep architecture, and can affect kidney and liver function. “Side effects” of antipsychotics include metabolic syndrome, diabetes, extreme weight gain, unusual arrhythmias, and kidney damage. Such side effects are not conducive to “feeling better”.
29
@Steve FYI, some experts have estimated that the FDA only receives about 5 to 7% of the adverse drug event reports that it should. Therefore, it is quite difficult to determine so many effects deemed as "rare" when there is simply not enough data coming in to prove such claim.
12
@Steve What you claim (that restrictions on anti-depressant prescribing in children) is far from supported by the evidence. On the other hand, the fact that anti-depressants can increase suicidal thoughts and trigger aggression/disinhibition is well established. For a kid with severe depression, these side-effects might be worth risking. The issue is that too many kids (and adults) get prescribed medications for moderate & mild depression, and no other effective treatment is offered.
3
They are not side effects but effects. Many drugs have so little benefit that the side effects are more dangerous than the effects.
77
In medicine, if properly conducted, the first rule of thumb SHOULD be "Prescribe to thy patient no medication to treat a disease that could be prevented or eliminated by a change in diet or lifestyle."
I.e., (A) Education of your patient as to correct diet/lifestyle choice results in (B) prevention/elimination of their chronic disease resulting in (C) no need for your prescribing dangerous medications in the first place leading to (D) your patient's complete avoidance of deadly side effects (to say nothing of their avoiding a lifetime of paying for expensive, unnecessary, dangerous drugs).
But where's the money in that, right? Last time I checked, you don't need a script from your physician to purchase broccoli in the produce section, do you?
104
@Greg Gerner I tell my patients all the time that they need to change their eating habits. The vast majority of them do not want to hear it and won't do it.
48
@Greg Gerner,
I agree. Many drugs are prescribed to treat “lifestyle” conditions or diseases, such as high BP, high cholesterol, cardiovascular disease, diabetes, etc. They are called “lifestyle” because in the majority of cases, the cause of these diseases or conditions Is lifestyle — an unhealthy lifestyle. Which is the typical American lifestyle.
Over 15 years ago, my brother was overweight and out of shape and prescribed several drugs, including for high BP, high cholesterol, and eventually T2 diabetes. So he researched his options, and started exercising and eating plant based foods (eventually whole plant foods). He gradually lost 70 pounds and went off all his meds, including for diabetes.
Too bad the doctors gave him prescriptions for drugs, instead of prescriptions for healthier living. He had to find out what to do on his own.
I think that for these lifestyle diseases or conditions, drugs should be a last resort, not the first, which should be a healthier lifestyle.
49
@Greg Gerner Nice try, but 30 years of medical experience has shown me that a quick fix is what people want and that it is an uphill battle to get people to do physical therapy, to have a good sleep-wake pattern, to keep hydrated, to eat a balanced diet and to work with a psychologist. Like many physicians, I am salaried and make nothing extra from seeing a patient many times versus once and make nothing extra for prescribing anything at all.
-
More properly targeted would be to place blame on a society and health care system that devalues time spent in conversation with patients, that values procedures over counseling/educating, that ignores mental health and compels physicians to practice "defensive medicine". This last bit leads not only to ordering too many tests and procedures, but also to prescribing too much medication out of fear of losing patients or being sued for not "doing something."
49
Many people are placed on permanent medications that they are supposed to continue until death.
In reality, few medications should be forever. This dangerous practice isn't only an escape clause from doctors' responsibility to Do No Harm, it has the same effect on pharmaceutical companies, which are under no compulsion to document long-term side effects of forever drugs, and to develop withdrawal advice and timetables.
80
@Sequel There are at least three issues with this I think about, one is that many people don't want any help and constitutionally, unless they are breaking a law, that is their prerogative. So a physician that thinks he is involved in some way with a person that has not asked for help has no way to consider medication withdrawal effects. Another is the arbitrary nature of civil commitment, and thirdly is the notion that the homeless are for the most part vets or mentally ill. These share a propensity of civil commitment I fear, unconstitutionally.