I was just diagnosed with PMR . I had been suffering from shoulder, neck, and leg pain for 3 months without knowing where to turn. My orthopedist thought it was shoulder impingement, went to PT , the usual route with no relief. As soon as I read your article I sought out a rheumatologist, who knew what was going on right away. I have started the Prednisone and after 3 days feel like myself again. I know it’s a long term treatment but I am so happy to be able to undress without pain, read the paper without neck pain, and squat in the garden to weed without holding onto a tree. Thank you so much for bringing this condition to the readers! I am so grateful!
2
Re: Prednisone.
Yes, it is a "miracle drug" and yes, it has many, many bad side effects, from hallucinations, euphoria, to bone thinning, weight gain, and on and on.
Point is: if you need it badly, then take it! I have very bad lungs (COPD though I never ever smoked) and MUST take prednisone for bad flare ups. Yes, it causes me negative side effects.
Nothing in life is free or without risk.
(speaking as a retired RN with 30 years working in hospitals).
4
For anyone trying to cope with either one of these conditions I highly suggest checking out this helpful forum based in the UK:
Https://Healthunlocked.com/pmrgcauk
Great information from people who live with these conditions.
5
This sounds beyond horrible and also like it comes on with no warning, and like a freight train.
Would a neurologist be able to tease this out, or is it always mostly a rheumatologist?
Not that either are easy to find or get appointments with ...
Good luck to us all.
2
From MedPage: A WARNING: The efficacy and safety of the new zoster vaccine Shingrix has not been established among patients with autoimmune diseases.
People with autoimmune diseases were removed from the trial, so we don't know what might happen to us. My doctor told me to wait and see what happens to others. I think that's good advice.
StatinVictims.com
3
@sing75
Ridiculous. Shingrix is a dead vaccine (unlike the older Shingles vaccine.) You can't get a virus from a dead vaccine. Look at the following CDC site and page down to "Q: What are the primary differences between Shingrix and Zostavax?"
https://www.cdc.gov/vaccines/vpd/shingles/hcp/shingrix/faqs.html
2
@sing75
I'd be curious what organization is giving you this warning (other than the one Medscape article.) My doctor (heads a top-five auto immune group) has been recommending Shingrex for at least a year.
2
@sing75 I have several autoimmune diseases and my doctor had me get the Shingrix vaccine as soon as it became available. Since it is a dead vaccine you can't catch it.
1
Some of the symptoms are identical to those experienced by those suffering adverse effects from statins.
Out of curiosity, were statins being taken?
StatinStories.com
@sing75
I have not been taking statins.
Jane. Many thanks for you informative article. I too was diagnosed with PMR at age 68. I am now 73 and doing well. I fortunately was diagnosed quickly and immediately started in 25 mg of Prednisone and after the first dose I felt like someone had poured soothing oil down my spine. Two years tapering off prednisone has been a challenge but so far so good. Many thanks for bringing all this information to so many of us. And thanks NYT for publishing the article! Gayle Darby
9
I too was diagnosed with polymyalgia rheumatica about 15 months ago which my family doctor diagnosed on my second visit. He is also treating me for type 2 diabetes which I've had for about 20 years and is largely under control. I lost 35 lbs. in 3 months and became noticeably weaker. Treatment has consisted of prednisone (starting at 30 mg and methotrexate). Happily I was able to quit the prednisone 2 months ago after careful tapering. Do not taper too quickly! The PMR came back with a vengeance when I push it too hard. My rheumatologist says it may take another year to lose the methotrexate.
One side effect of the prednisone has been to my skin which bruises and tears easily. I have aged about a year since also this started but my skin has become like father's who is coming up to 97. I am 70 by the way. This should improve however.
All this started about 4 months after I retired from a job I dearly loved which kept very physically active and very socially engaged.
I'm no hermit and stay quite active but not like before. I don't know if there is a relationship there but still.
As far as getting reliable information, I found that the Mayo clinic website was very good and which I checked against Web MD and general internet searching.
8
@James
Thank you for your response. I'm sorry that you're experiencing the problems you describe.
I asked about statins because I and others I know have diseases with very similar symptoms to what you describe. Prednisone was tried for us, but to no noticeable effect.
Statins do cause type 2 diabetes as an adverse effect, though clearly not relevant in your case.
Also, everyone with an autoimmune disease should know that immunocompromised people were not included in the Shingrix trial, and that although the virus is dead, Shingrix has an extremely powerful, never-used-before adjuvant that could conceivably cause terrible effects for us.
Shingrix is the new vaccine for shingles. I'd love to get the vaccine normally, but my rheumotologist considers it too risky at this point.
I wish you the best.
StatinStories.com
1
Yes, specialists sometimes make mistakes. Sometimes they are good mistakes, as when my wonderful rheumatologist thought I had polymyalgia rheumatica and found she wrong. Meanwhile, she found I had been exposed to TB, so I got treatment to prevent the disease from developing.
But there are also some very bad rheumatologists out there (as well as other specialists). After I moved and had to find a new rheumatologist, one immediately decided, without testing, that I had rheumatoid arthritis and wanted me to take medication immediately. I was able to travel back to my original rheumatologist that time; I don't have RA. The second one offered treatment for a swollen knee without examining me--twice. I moved on again. The third one was okay, but he retired. In a few weeks, I will try a fourth one and hope he's a good doctor. It's such a crapshoot.
8
@Barbara
speaking as a retired RN: make sure any doctor you see is "Board Certified" in whatever specialty he/she practices.
Seriously, someone who is a legit. family practice doctor CAN put out a shingle and advertise as a plastic surgeon, Ob-GYN, or whatever else....
1
@RLiss
Totally true. A MD friend pointed out that one MD was listed under every single specialty in Yellow Pages! Freaked me out.
I would like to add my experience with debilitating bilateral shoulder pain that lasted a year. An extensive ortho workup showed nothing. The pain was so bad I couldn’t drive, and hence, work, as I am a nurse practitioner who does home visits. Finally exploratory surgery was scheduled. When I went for the pre-op labs I requested a TSH (thyroid) test as I had lost weight unintentionally. Sure enough I had Graves’ disease, an autoimmune disease. The surgery was cancelled. I had radioactive treatment to ablate the thyroid. As soon as my TSH came back to normal about 3 months later, the pain completely disappeared. I found medical articles connecting joint pain to Graves. My ortho knew nothing about it.
5
The suggestion for prompt proper care assumes that seeing a qualified physician is remotely possible where one lives.
I developed sudden headaches along the occipital arteries (unfortunately for me, my GCA did not present with textbook pain around temporal arteries) and a sudden onset of blurry vision. I have the most expensive HMO option my employer offers and live in the well-to-do part of the largest city in my state, still the wait to see an MD was 2 mths (my regular GP had just retired). I was shunted to a PA instead for an “accelerated” appointment wait of 2 weeks.
When I arrived and explained my symptoms, the PA said that this was beyond her expertise (she arrived at this opinion from the comfort of her chair, having examined nothing). She did say that a CT scan was indicated but the wait times for one were running a month out, so she sent me to the ER of the local university hospital.
At the ER a CT scan was done and I was moved back to the waiting room where I spent the next 14 hours, having at no point seen anyone beyond a nursing student. When I finally insisted on leaving, having correctly assumed that there’d been no sign of a stroke, an intern moved me to a bed instead. After another 3 hours I saw a 1st yr neurology resident and an ophthalmologist. I’m 49: the possibility of GCA was never entertained. The headache was diagnosed as sinusitis and the blurry vision as “dry eye.”
4 mths later I managed to see a rheumatologist. I have permanent vision loss.
14
The Differential Diagnosis for all PMR patients MUST include Borrelia infection.
Steroids are CONTRAINDICATED in the presence of an infection.
3
I was wondering if there was some type of organization one is able to join in order to discuss these two diseases other than Facebook?
Thank you.
6
The Myositis Association. Myositis.org
Excellent resource for community, available physicians (by state), research, and a direct line to pertinent NIH information. And don’t forget the annual conference, which can be subsidized, if needed. Unfortunately, this article BARELY touches on anything of lasting substance, if you have any knowledge of either of these diseases. I would expect that a far more medically educated person would write such an article for the NYT.
3
I seem to remember coming across a PMR patient’s forum based in Scotland. That group lead me to Facebook which has two support groups (one with over 6.3K members). There is also a FB group for those trying to fight PMR without prednisone. For each group you must “qualify” (have the disease or care for someone with the disease) to join. Then there are rules prohibiting advertising or medical advice. All posts are only shared amongst the group. In my two years of suffering, I have never met another person with PMR yet I have shared experience and insight with of thousands fellow sufferers located throughout in the English speaking world. There are minor, but fascinating, differences in care. For example in the UK you are given a Steroid card to carry with you. Should you be in an accident, this alerts medical staff that you take and need to continue to take prednisone. I downloaded a card, added a bracelet and feel better about it. No way I’m starting over. Tapering is a long delicate painful dance, not to be repeated if possible. My Rheumatologist didn’t have a plan for really slow tapering, but through the FB group I have a schedule developed in the UK that’s worked for me.
6
@phyllis After being diagnosed with GCA in late 2017.
I discovered https://healthunlocked.com/pmrgcauk in the UK. I found it more informative than any group in the US. It's free to join and they have moderated forums. There are links to the UK Rheumatology Society and top researchers' articles. I'm envious of patients with GCA and PMR in the UK with their access to resources, hospital-sponsored symposiums, and meetups. Mayo Clinic Connect and Patient.info have moderated forums too.
6
These 3 references published in the Medical literature in peer reviewed Medical journals confirm the infection with Borrelia in Temporal Arteritis.
https://www.ncbi.nlm.nih.gov/pubmed/2522942
https://www.ncbi.nlm.nih.gov/pubmed/8961995
https://www.ncbi.nlm.nih.gov/pubmed/22420373
Steroids are CONTRAINDICATED in the presence of an infection.
Appropriate antibiotics must be administered - NOT STEROIDS.
4
Thirty years ago, at the age of 52, I was diagnosed with polymyalgia rheumatica within a short time of onset of symptoms. Treated with prednisone. Both temporal arteries immediately biopsied and found to be clear. It was necessary for me to take Fosamax for the six-month duration of treatment as prednisone causes bone deterioration. Autoimmune diseases are familial in the sense that one or another autoimmune disorder, not always the same one, can affect relatives. This was true for me. Diagnosis was confirmed by sedimentation rate testing. Apparently this was the standard 30 years ago.
Ms. Brody, Just read your column on PMR/GCA and was so pleased that the disorder is being recognized. I was recently diagnosed with both and literally could not believe what was happening. Like you stated, I was lucky enough to find the right rheumatologist who treated me spot on. It’s going to be a long process but I was one of the lucky ones who found all the right doctors who listened and treated accordingly.
Again thank you for the informative piece and bringing this debilitating disorder.
3
@Lorraine F. Hi,
Could you possibly share the doctor's name? My mother believes she has PMR and wants to get a proper diagnosis. She is in immense pain and is now developing vertigo.
Besides looking into causes, what’s missing in this interesting article is a mention of how important it is to taper off prednisone as soon as is possible without serious symptoms coming back, and that the longer you are on it, the more carefully you must taper. Doctors assume patients will follow instructions (ie take their meds as told), whereas a patient might try to come off high doses cold turkey when faced with mental and physical side effects (as my mother did because the importance of tapering was not sufficiently explained to her). And some individuals are more sensitive and become dependent more easily than others. Prednisone is a two-edged sword. Try never to need it. Thank goodness it’s available when you do. And if you do need it, be grateful for it, but not so grateful that you neglect to manage it very carefully and free yourself from it as soon as you can, but prudently.
14
Why not dig deeper and investigate (and treat) the cause？ Steroids fix just about anything. But it's a lazy and incurious bandaid.
6
@Michael
Completely agree with your analysis. Steroids are an easy fix. Ppl from N. European backgrounds should have their antitrypsin levels checked, to see whether they are out of normal range. Here is a quote from a paper on vascular inflammation, including prn: "...we estimated the annual incidence rate and point prevalence of PSV in people with severe α1-AT deficiency.
RESULTS: Five patients (three women, median age 49 years) with PSV diagnosed between 1996 and 2008 were found to have α1-AT deficiency, all of them carrying the protease inhibitor ZZ (PiZZ) phenotype. During follow-up (median time 166 months, range 53-208), four patients experienced a total of 13 relapses. The median Vasculitis Damage Index (VDI) score for all patients was 3 (range 1-4) at year 1, and 7 (range 3-9) at the last follow-up. The incidence rate of PSV among PiZZ carriers was estimated to be 397/million [95% confidence interval (CI) 8-787]. The point prevalence on 1 January 2013 was estimated to be 4689/million (95% CI 94-9285).
CONCLUSIONS: In this study both the incidence and prevalence of PSV were elevated nearly 10-fold for individuals with severe α1-AT deficiency compared with the general population. Combined with previous publications, this indicates a dose-response relationship for the genetic risk and suggests a causal relationship between the PiZ allele and vasculitis"
Levels of antitrypsin change with age. This could help explain why it is unusual to diagnose prn in ppl under 50.
5
@Michael
I certainly agree with you in principle Michael. Unfortunately there is little funding for these diseases so it will probably be a long time before the cause is fully understood and better medication developed. However, as a sufferer from both conditions, I am deeply grateful for prednisolone (as it's called here in the UK) despite the various drawbacks. The morning of the day when I was diagnosed - like every morning for the 4 previous months - it took me 20 minutes to get out of bed and a further 30 minutes to shower and get dressed, leaving me virtually prostrate for the rest of the day. The pain and stiffness of PMR and the intensity of the GCA headache have to be endured to be believed. When I took my first dose that afternoon, the pain and stiffness virtually disappeared within hours. Admittedly pred does nothing for the deadly fatigue which is the other major symptom of these conditions and, of course, it can cause a range of side effects. Nevertheless I am eternally grateful for the huge improvement in my quality of life and, of course, for retaining my eyesight.
8
In primary care, it is important to palpate and repalpate the temporal arteries in patients with new headaches. If one palpates a "knotty temporal artery" that is a very good physical exam indicator of temporal arteritis.
Salsalate a dimer of salicylate can sometimes be adjunct therapy to steroids in the treatment of temporal arteritis with associated polymyalgia. It is also a medication that will help counteract steroid effects of diabetes exacerbation, can be monitored with blood levels (salicylate level) and has the biochemical property of upreulating Nrf2 and downregulating NF-kB, thereby moderating the pro-inflammation effects of temporal arteritis and polymyalgia rheumatica. It also does not affect the stomach adversely like aspirin does and does not serve as an anticoaulant to potentiate bleeding complications. It also inhibits the acetylation of tau proteins. It is an underused drug because it is a pre-1938 drug that does not have FDA approval and its price went way up starting with the onset of the ACA.
It is important also to be aware that TA and PMR once present and even once quenched via good therapies can recur years later.
One underused diagnostic entity is optical coherence tomography that can document microinfarct of eye tissues as an early manifestation of TA
One interesting etiological possibility is that herpes simplex and the Shingles virus might upregulate NF-kB, thereby initiating localized arterial inflammation transitioning into TA.
2
@cbahoskie
Borrelia spirochetes are seen in the Temporal Artery biopsies.
After being diagnosed with GCA I participated in the clinical trial (for FDA approval) of tocilizumab as an alternative to prednisone. Unfortunately, I received the placebo, but those in the trial who received the real thing showed remarkable results WITHOUT the negative side effects of prednisone. The only downside of tocilizumab is cost (about $3000 per dose). Sadly, in the early stages of my treatment by a phenomenal rheumatologist, I suffered permanent, but partial vision loss in one eye. All attempts to reverse this damage (including hyperbaric chamber) were unsuccessful.
Therefore, this condition should not be taken lightly. Prompt and thorough attention at the earliest symptoms is well advised.
15
@Barry, I was given tocilizumab (Actemra) several years ago for GCA. It worked wonders -- for the first time in years I was able to jump the waves with my adult children on vacation. Unfortunately, I developed severe pancreatitis and a pancreatic pseudocyst that landed me in ICU for 5 days. I had to stop it. Since then I just continue on Prednisone, with horrible side effects. I've tapered from 60 (July, 2016) to 6 (currently) and just had femoral/popliteal bypass on my left leg due to blocked arteries -- not sure which caused which. This disease is so debilitating.
2
As someone in his 70's who's endured very similar symptoms for 8 years now, the first question that pops to mind is whether either Ms. Sullivan or Ms. Uffner is or was on a statin drug.
If only one of them has taken a statin drug, I'd guess Ms. Uffner. Being older (like me) and so athletic (even more than me) does correlate with problems with statins, and the symptoms are pretty much identical.
There are diagnosed autoimmune diseases like Statin-Associated Autoimmune Myopathy, https://www.nejm.org/doi/full/10.1056/NEJMra1515161
and there are also other similar statin-triggered diseases common enough so that I know two local physicians and a couple of other people at my health club who now endure them.
One of these people was doing 21-floor stair climb races at age 76; less than a year later, he'd lost the ability to walk. I myself was trekking in the Himalayas at age 68; seven months later, after low-dose statin, I was in the same boat: crutches.
All of the things: joint pain, fatigue, torn tendons & ligaments, a quick journey from young to old, from healthy to sick.
Though there's no proof of benefit for statins used for primary prevention for people over 75 (many say 65; Dr Barbara Roberts at Brown says all elderly women), about half are on a statin drug. Common, universally-acknowledged symptoms are those described in the article.
My point is that statins should be eliminated as a possible cause of such symptoms--even when the statin is stopped.
StatinStories.com
11
Some aspects of this article are a bit outdated, although this is the kind of info most medical sites still carry. SED tests are now viewed as a mediocre and inaccurate diagnostic tool -- CRP is considered a more accurate inflammation marker. Also the formal consensus rheumatology PMR/GCA document in the UK and I believe also US no longer describes PMR or GCA as conditions where '70 is the average age of onset 'but rather as conditions of age 50+ . Also these newer documents no longer state that all pain should disappear on preds or that people can soon resume normal activities -- many (most, in my experience of patient groups) with this condition struggle with pain and stiffness and exhaustion for the whole time they have the condition. The condition doesn't always go away, and a significant number of people are permanently on some level of prednisolone & really struggle to come off. I think because these have been (seen as) conditions of the elderly, little effort has gone in to researching either in the past, or looking for alternatives to preds (which none of us with these conditions wants to take). Thankfully this is beginning to change, but think UK research is probably more advanced.
25
@KJL, I agree with you completely. I was 53 when I was diagnosed with PMR.
@KJL I am a medical technologist and also was diagnosed with GCA in April 2018. I used to think ESR was an antiquated and obsolete test too. But when it was ordered for me along with a CRP level, I realized it really does serve a useful purpose as an inflammatory marker. Both were elevated for me prior to treatment and now both are at low or nondetectable levels.
It was hard finding a diagnosis - these two diseases don't seem to be on the radar of primary care doctors. Luckily I was steered to the Arthritis and Rheumatism Associates, P.C., the largest Rheumatology practice in the Washington, D.C., area. It took a year of attentive medical care and a regime of Prednisone to recover from my bout of polymyalgia rheumatica. Before this happened, my exercises of choice were pilates and yoga. I switched to Feldenkrais and highly recommend this as follow up to the necessary medical attention.
6
@AJPR. I was diagnosed by my primary care physician.
1
My mother was diagnosed with PMR at age 85. The diagnosis was originally complicated by the fact that she was being treated for bacterial pneumonia when the PMR signs/symptoms appeared. Her PCP spent a considerable amount of time looking for one primary cause of these seemingly disparate signs/symptoms. He did, in fact, test for Lyme which was negative. He referred her to an infectious disease specialist who ran many tests including SED and CRP. All specialized tests were normal at that time, although both SED and CRP did change quickly before long. That physician did, fortunately, biopsy the temporal artery which came back positive for GCA. At that point she was started on prednisone which she continued to take for the remaining 2 years of her life. Her dosage ranged from a max of 60 mg to a low of 15 mg. Never could get her any lower than 15 mg without a flare.
Unfortunately, she did have a massive stroke and did lose the vision in her right eye. She succumbed to the effects of the stroke within a matter of weeks of its occurrence.
Time is of the essence where diagnosis is concerned. I do wonder if she'd been diagnosed more quickly would the outcome have been different? She was in excellent health and very active up until the pneumonia/PMR/GCA occurrence. I should add that at no time did either physician mention autoimmune disease or suggest a rheumatologist. I learned a lot a little too late.
9
The prednisone was being reduced by 1mg a month. Once I got to 3mg, the symptoms came back in a much milder form. Going back to 5mg didn't work. Starting over did. I got an occasional irregular heart beat, but it went away as the other symptoms did. I originally thought that it came on suddenly. I realized that the symptoms had been developing for a year. It also hurt my vision.
9
I was diagnosed over 10 years ago with Temporal Arterites
been on prednisone and methotrexate ever since. Started on
60 mg of prednisone and am now up and down on prednisone and 12 mg methotrexate. Metho is taken once a week. I am a white male in my late 70’s. Have blood tests ever 2 months and eye doctor every 3 months, also have raft of other conditions.
7
I was diagnosed with PMR three years ago and successfully went into remission until this past January when a flare began. Three years ago I was put on prednisone which was very effective. After a year on the drug, I was suffering from all the side effects including the dreaded moon face and weight gain. I changed rheumatologists and now get depo-medrol shots and give myself weekly Methotrexate shots. I also dislike the strong side effects of MTX. My doctor is currently researching the use of low-dose naltrexone on PMR. Some doctors prescribe it for fibromyalgia, MS and other disorders. I am hoping to give it a try.
BTW, my doctor has prescribed an “emergency” supply of high-dose prednisone should I develop symptoms of temporal arteritis. It would give me a chance to begin treatment before getting in to the doctor for verification of the diagnosis.
11
I was first misdiagnosed with a sinus infection and was in terrible pain for a few days until I felt the swelling in my temporal artery. Luckily I was immediately treated with prednisone in the ER , then had the biopsy to confirm the diagnosis. (The prednisone immediately reduced the pain.) What took much longer was to be seen by a rheumatologist - 3 months in my case and his first comment was "what took you so long to come in?" I was also given methotrexate which had some side effects like mouth sores but I got through the treatment in 9 months. I know that ,horrible as it was, I was lucky.
9
As an active woman who played tennis, skied, and hiked and had bone density of a younger person, I didn’t recognize the symptoms, just thought I was overexercising. I was diagnosed with PMR at age 68 and followed the prednisone protocol without any ill effects, until I fell and broke my ankle. Immediately I was put into the category of osteoporosis and am on a drug called Forteo until I heal. I will need shots to strengthen my bones most likely indefinitely. It was like I became an old person overnight. There must be psychological damage to PMR. Any advice?
7
Years ago I read a study from the NIMH concerning the effects of cortisone on the brains of people experiencing organic depression. In some people, this very sticky matter adhered to brain tissue and plunged them into an irreversible deep depression. Please excuse my ignorance, but is this one of the possible side-effects of this treatment?
6
What a surprise to see both our conditions featured in same NYT article. He was diagnosed with GCA @76 almost two years ago. He couldn't raise his arms or turn his head..PCP sent him to physiologist who then sent him to PT. PT helped his arm mobility but then his legs hurt so back to physiologist and mri ordered. Meanwhile, PCP knew SED rate high and he had an inflammation but now he knew where. Prednisone did the trick for sure and he's down to 2.5 mg. Pretty sure a UTI set all this off. This summer I (age 69) had bilateral arm pain which was chalked up to overdoing new exercise program at the gym. Some times minimal pain, some times excruiating pain. But then it spread to my legs bilaterally. PCP in same practice immediately tested me for every from sed rate to lyme. SED and creative protein was normal but she was sure I had PMR. It was my plasma fibrinogen that indicated PMR. One day of 25mg prednisone and I was painfree. Immediately went down to 20mg for two weeks and still fine. Going down to 15 asap. Went from semi paralysis to pain free. Bizarre condition since I was in pain on some days and not others while he was always in pain til disagnosed. Great detective work by PCP (specialty gastroenterology) and PA totally independently.
10
Thank you for this article and the many insightful comments. When PMR hit me out of the blue two years ago, I began a life changing journey. Prednisone allowed me to function but came with nasty side effects (weight gain, irritability, pre-diabetes). As I tried to aggressively taper, my body wouldn't let me. Eventually, I found my way to PMR support groups on Facebook where sufferers throughout the world share their experiences and tips. I have learned how to taper slowly and listen to my body. I've radically changed my diet by eliminating sugar and junk carbs and learned that moving my painful joints/muscles is an essential part of my day. While I face pain every day, I feel and look better than I have in decades. I know that one day soon I will take my last dose of prednisone, but I will continue to care deeply about my health and I will always have compassion for people who suffer from chronic illness, especially painful illness that doesn't show on the outside.
28
I developed this disease in my 50s. I was already seeing a rheumatologist and taking Humira for arthritis. My PCP suggested that I see the specialist as I was complaining of pain in my arms and elsewhere. The rheumatologist dismissed my complaints as nothing more than age after a sed test proved negative. (The article is misleading on tests.) I later took a dose of prednisone by mistake and it immediately relieved my symptoms. My PCP again sent me back to the specialist who did another sed test which was positive. It took a year or so of low dose prednisone but the PMR is gone. But I was really surprised that the rheumatologist who has a terrific reputation initially misignosed it.
6
Fifteen years ago the field of vision in my left eye was reduced to about 10%, and that not clear, thanks to an attack of temporal arteritis. In a London hospital, I was given intravenous steroids on emergency basis, pending eventual TA diagnosis by sample removal of temporal artery. Over two years, prednisone dosage was gradually reduced from 100mg daily to perhaps 50 mg after return to the U.S., and very gradually to minimal dosage, 4 or 5 mg daily. In these subsequent years, I have had episodes of polymyalgia rheumatica, on top of cochlear hydrops, another auto-immune disorder of unknown origins. I've gone through many of the side effects of prednisone, but am thankful I can still see with my right eye. I've learned to walk unaided, read, drive, even play golf at the age of 75. Overall, my health is very good to excellent. My advice: if you have unusual headaches in your temporal area, immediately seek a doctor who knows about arteritis. Also, find a good rheumatologist and stick with him/her.
11
A close relative in her eighties has been taking prednisone for a month now to get her ulcerative colitis under control. She started at 40 milligrams a day and is working down to 5 milligrams a day. She will be off prednisone after one more month. So, she will have been taking it for two months.
The noticeable side effects of prednisone for her are euphoria, anxiety, a greater appetite, and insomnia at the higher dosages.
I am hoping that there aren't long-term side effects for her of taking this drug. My fingers are crossed.
2
Just a quick thought, most of these patients will be seen by PCP's. As an internist I have made the diagnosis of both PMR and Temporal arteritis (with temporal artery biopsy). The key is a high index of suspicion when patients have Symptoms of fairly rapid onset associated with malaise, and occasional fever and wt. loss. ( I have never made the diagnosis in a patient under 50 this would be a real challenge). In addition, For temporal arteritis you need a surgeon who can expedite a temporal artery biopsy quickly after you make the clinical diagnosis and start the patient on prednisone so as no to lose the pathologic findings which may occur with prolonged time between initial empiric treatment and Biopsy. Many have commented on the side effects of prednisone and of course these are valid. Steroid sparing agents for the treatment of PMR and GCA are out there but Prednisone is the mainstay of treatment. Furthermore the literature implies that these patients are easily weaned of steroids. When I was unable to wean these patients with PMR I referred them to Rheumatologists figuring I did not know the secret. The Rheumatologists have not been able to wean them either and the vast majority of them are on 1-5 mg of prednisone a day despite multiple attempts to wean. all patients with Tempora arteritis are seen by Rheum.
8
@David Sharkis
Are you aware of the current medical literature ?
Biopsies of Temporal Arteries reveal spirochetes in patients diagnosed with PMR.
All of the symptoms of PMR are seen in spirochete disease - i.e Borrelia Burgdorferi.
Proper testing is critical.
CDC condoned testing yields false negatives.
5
@Alfred Miller,M.D.
Dr Miller ....are you saying that the blood tests for Lyme Disease yields so many false negatives that we should get biopsies also?
1
@Mary Ann
I recommend:
21 days of provocative antibiotics and then blood test "Borrelia Immunoblot".
1
Prednisone can also stimulate effects that mimic mental health disorder symptoms, like audio hallucinations (hearing voices).
8
In addition to steroids, I really healed from rheumatoid arthritis through the Autoimmune Paleo Diet. The prednisone only worked to reduce the initial inflammation, but the diet changes made a huge difference in how I feel and now I am pain-free.
16
In my early fifties I was diagnosed with PMR. It took awhile to figure it out. I had bilateral soreness of my shoulders and thumbs each morning along with a low fever. I took aspirin. It went away by noon. Eight years later I started having night sweats and rigors (the shakes) almost every night with a fever. There were good days and bad days. It took 2 1/2 months to figure out I probably had GCA since I had no vision or headache issues. By the time I started on prednisone (60 mg) I was in acute kidney failure and needed two pints of whole blood. I was off the prednisone in both cases within six months. There have been no recurring issues.
10
Every patient with Polymyalgia Rheumatica MUST be PROPERLY tested for Borrelia infection (Lyme Disease).
Every patient with Temporal Arteritis (Giant Cell Arteritis) MUST be properly tested for Borrelia infection (Lyme Disease).
Treatment is with appropriate antibiotics.
Steroids are contraindicated in the presence of an infection.
Alfred Miller,M.D.
20
@Alfred Miller,M.D.
Respectfully, determining tick borne illnesses seems to be based on the timing of the tests as those spirochetes can hide, not appearing in testing protocols, depending upon when tests were conducted during the course of one's illness.
4
@Molica
You are correct.
The tests measure the antibodies produced against the spirochete.
In the chronic illness the spirochete becomes a cystic structure and is sequestered and hiding from the immune system.
If the immune system is not challenged no antibodies will be produced.
To overcome this situation I recommend 21 days of provocative antibiotics to bring the spirochete out of hiding. Flagyl opens the cystic structure allowing the antibiotics access to the spirochete.
After the 21 days of provocative antibiotics the immune system produces a robust response producing antibodies which makes the testing valid.
10
I practiced Rheumatology in San Antonio,Tx. for 40 years.
I trained at the Mayo Clinic, Rochester,Minn., where I saw many cases of Polymyalgia Rheumatica (PMR). I was instructed to always obtain a Temporal Artery biopsy as soon as the diagnosis of PMR was established. This was considered a "medical emergency"in order to rule out Temporal Arteritis (AKA Giant Cell Arteritis).
If Temporal Arteritis was seen on biopsy, treatment with high dose steroids was begun immediately to avoid permanent blindness.
In the past few years I have read many articles published in Medical peer reviewed journals about Temporal arteritis (Giant cell Arteritis). The biopsy specimens properly stained with silver stain reveal spirochetes.
Borrelia Burgdorferi (Lyme Disease) may present with the identical clinical picture as PMR and the presence of Borrelia spirochetes in the Temporal Artery biopsy confirms the diagnosis.
Treatment with steroids is contraindicated in an infection with spirochetes.
Every patient diagnosed with PMR must be properly tested for an infection with Borrelia and if present treatment with appropriate antibiotics is required.
This important infection MUST be considered and NOT overlooked.
Alfred Miller,M.D.
35
@Alfred Miller,M.D.
I would go one further since the tests are so faulty and be treated as if you have it as you most likely do. Within a short time on the right antibiotics your pain will go away. The proof is in the pudding.
3
I started with PMR symptoms October 23rd, 2018. I know the date because I went to bed the night before just fine, and woke up with pain in the muscles of my upper arms and across my buttocks. Within days I couldn't raise my right arm to brush my hair, or bend down to put the cat food dish on the floor. Eventually sitting was painful.
I am allergic to prednisone and benadryl and ibuprofen was not helping. My doctor sent me to a rheumatologist who prescribed Meloxicam, an anti-inflammatory. It alleviated the symptoms gradually. She also prescribed PT to make sure I was using my muscles in my upper body correctly. That too helped.
The concern was possible side effects that would be harmful. My blood pressure numbers increased. A month ago, having been pain free for several months, and concerned @ the blood pressure I decided to try it without the Meloxicam. So far, so good, and my blood pressure is back to normal.
5
Ms Brody glosses over the side effects of prednisone and doesn’t mention the not uncommon side effect of steroid-induced osteonecrosis usually of the hip or shoulder.
9
Entirely correct. I was given 50 mg prednisone and after reducing now to .25 mg two years plus later, I now need a hip replacement due to the prednisone.
7
Prednisone can almost be magic...taking away the horrific pain of the inflammation that accompanies almost all Immune Disorders.
And prednisone used over time in large doses can do irreparable harm to our bodies.
Those of us who have a Chronic Systemic Inflammatory Disorder (Immune mediated) are between 'the rock and the hard place'.
Without prednisone life seems not worth living, and yet many physicians are justifiably reluctant to include prednisone treatment, except on a very limited basis. It is often very difficult to find adequate treatment.
Fortunately, my Immunologist allows me a limited amount of prednisone, which I use as needed to interrupt flares of my immune disorder.
I am very careful, use prednisone only as needed, and for the shortest time possible. At 77 I am not so worried about very long term effects, but I am aware and very careful.
28
@elained
Thank you for this useful post. After a month of "suffering" with terrible muscle pain I finally saw a physician when it got bad enough. He rapidly made a diagnosis of PMR and started me on prednisone. I am starting to taper pred dose and have made an appointment with a rheumatologist to manage the whole thing. I am hopeful that I will get good advice on how best to manage the PMR on as little prednisone as possible. I am 74, still working part time and want to remain active. I work in the healthcare field and am concerned about the side effects of prednisone. Thanks.
10
Thank you for this article, One side effect of prednisone that was not stressed enough though is bone thinning. My mother was diagnosed with Temporal Arteritis when she was 66 in the mid1980s and immediately started on prednisone. The prednisone cured the TR. However, she immediately gained a considerable amount of weight and soon developed extreme bone thinning, especially in her spine. I also recently read an article about the side effects of giving large doses of prednisone to children with Duchenne Muscular Dystrophy - again weight gain and bone thinning. Prednisone can be a mixed blessing.
13
So glad Ms. Brody has taken on autoimmune illnesses. one of these comments mentions plaquinel (sic), which I now take (along w/ use of 2 creams) for another autoimmune condition: Lichen planopilaris.
Supplementing my dermatologist's information and regular googling for info about such autoimmune ailments, I hope Ms. Brody goes in this direction soon -- and takes on any possible connection of emotions/stress with autoimmune diseases!
8
@Pat Summers
I firmly believe many of the "autoimmune diseases" are actually infectious in origin.
An infectious cause must in the Differential Diagnosis of every illness now considered autoimmune.
Proper testing is critical.
8
There is another telling symptom of temporal arteritis I didn't see mentioned, which affected me when I had the disease. If you've lost weight and can't explain why, and also have the really terrible headaches, jaw soreness, and neck soreness, those are the classic symptoms. Prednisone, which has side effects as the writer states, is the only answer. I was lucky; my family doctor diagnosed it and I was cured without the need for a specialist.
9
I continue to struggle with arthritis in both hands. There are days I am in tears because of the pain.
My physician prescribed prednisone and the first few days I was in heaven because the pain had greatly decreased and I could actually use my hands more efficiently and effectively, especially when typing.
But then after 6 days or so, I began to experience side effects, the worst being chest pains. It got to the point where I needed to go to the ER because the pain was so severe, I thought I was having a heart attack.
While the tests did show a mild irregular rhythm, I was not having a heart attack. However, the ER physician explained that I could have been in serious trouble if I had stayed on the drug and not take immediate action.
I had a long conversion with my primary physician and he was alarmed but relieved by the action I took. He did state that prednisone does often carry side effects, especially the older the patient.
However, I do know a lot of folks who do benefit by this drug and I am happy for their success. I just think the potential side effects should also be included in this very, very important article.
15
@Marge Keller Pain in the hands is usually not a symptom PMR -- if you haven't seen a rheumatologist about this I'd recommend doing so, or if you have get a second opinion. Generally pain in the hands or feet is far more likely to be rheumatoid arthritis or osteoarthritis and I don't believe either are normally managed on prednisolone. Pain in hands is actually considered one of the symptoms used to make a differential diagnosis (ie to determine that the condition is unlikely to be PMR).
5
@KJL
Thanks very much for your kind and thoughtful recommendations and suggestions. Much appreciated.
1
My Temporal Arteritis (Giant Cell Arteritis, GCA) appeared overnight and presented itself as a headache with a degree of pain I had never known before accompanied by severe jaw pain that was so intense that it limited my ability to open my jaw and chew.
I took aspirin which reduced the pain temporarily. The following morning the full pain returned and I contacted my internist (not only did my internist, but also my cardiologist and pharmacist immediately identified its probable cause).
What is advised diagnostically is a biopsy of the temporal veins (which were abnormally "bulging") but my internist immediately started me on a high dose of prednisone which reduced the pain substantially within a day (I stayed on it and tapered down over 14 months).
Blood tests are also diagnostic in that GCA will also produce high sedimentation rates and a high presence of C-reactive Protein.
One last thing, after initial treatment by my internist, I then used a rheumatologist who are very familiar with GCA and as importantly the long-term use of prednisone and the safe withdrawal from it.
11
My mother was diagnosed with PMR when she was about 80. She developed steroid-induced diabetes, which is a risk of long term steroid use.
7
Onset at age 79 suddenly, almost overnight. My wonderful internist diagnosed immediately and she sent me to an equally good rheumatologist. Am on very low dose prednisone now after 5 years and without it symptoms returned while reducing to almost nothing several times. One bout of arteritis, caught very early, my ophthalmologist checks twice a year for eye inflammation after being informed of diagnosis.
All were aware of this disorder so wonder about the docs who are not? Blood test for SEDs each visit.
8
I was 68 when I woke up and was unable to move any part of my body. The pain was excruciating. My physician sent me to an orthopedist and I was unable to get up on the table by myself. It took 7 weeks of unbelievable pain before a blood test was done and the PMR was diagnosed. The first Prednisone pill did the job. I was on Prednisone for many years in decreasing doses. While I put on 12 unnecessary pounds it has never returned. This was the worst pain I have ever experienced. Am now 88 and while my body hurts - nothing ever topped that horror.
12
Luckily for me, my sister the Doctor knew immediately what the “professionals” dismissed even after I had told them my mother had suffered from PMR and all I needed was a prednisone regimen prescribed for me. No can do they replied. I switched to another doctor who believed me and presto, instant relief, no side effects, a quick end to treatment and no recurrence. Thanks sis, if you read this.
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@Thomas
Would be interested to know what testing helped in such an early diagnosis?
@Swan Lake
There is no testing - the diagnosis is almost entirely based on your symptoms. Typically, though, there will be an elevated erythrocyte sedimentation rate (ESR). Good luck!
Add to the symptoms of linger term use of prednisone is depression so raising and lowering levels of prednisone untake must be done carefully and incrementally. People shopuld also monitor their feelings while taking it.
16
PMR symptoms are seen in patients with a Borrelia infection (Lyme Disease).
Biopsy of the Temporal Artery in these patients reveal the Borrelia spirochetes (with silver stain).
Because the clinical presentation of PMR and Borrelia infection (Lyme Disease) are indistinguishable, every patient MUST be properly tested for Borrelia infection.
The CDC testing for Borrelia infection may result in up to 94% false negatives.
Valid proper testing should occur only after provocative antibiotics followed by Borrelia Immunoblot.
Steroid treatment is CONTRAINDICATED in the presence of an infection.
22
I didn’t know that both polymyalgia rheumatica and temporal arthritis were hereditary. Good to know. My mother had both in her late 70s. Now, if I notice symptoms, it may be enough to convince my doctor to not misdiagnose me or brush them away.
12
@Frau Greta
Families share the same genes and the same ENVIRONMENT.
Tick Borne Disease in the environment may produce an identical illness to PMR and Temporal Arteritis.
Proper testing is critical.
Steroids are CONTRAINDICATED in the presence of an infection.
Alfred Miller,M.D.
6
Temporal Arteritis is frequently misdiagnosed as pain from the masticatory system (the muscles and joints involved in chewing), and the patient referred to a general dentist or oral surgeon. It may take a long time in these cases to get to an appropriate medical or dental provider. Dr. Carole Goldsmith, DMD
12
@Carole
YES. I had stabbing pain in my ear, but main symptom was that I couldn't open my mouth, hurt to chew, extreme fatigue. 3 docs, saw 2ce: urgent care doc, dentist and primary. All said TMJ, stress. Googled "jaw pain & vision disturbance."Found GCA in English Daily Mail! Mentioned GCA to primary, who tested to "rule it out." Next morning, had to go to pharmacy and pick up prednisone, take 60mg immediately, schedule biopsy with vascular surgeon. Two days later had biopsy; next morning told to see a rheumatologist & ophthalmologist. On high dose prednisone for 18months. Wrecked my body, mind, life. As I was being weaned off after 8 months,GCA spiked so put back up. Turned out I had kidney stones, which had to be removed surgically because the sediment prevented passing them. (Found an article on that, GCA + kidney stones that the urologist and residents didn't know about.) Took 8 months to wean off of prednisone. Now on methotrexate, no picnic but less destructive. GCA high; rheumatologist theorizes because I now have tumors from cancer. Can't tell if GCA is gone except by symptoms. Cancer Rx side effects so difficult to track. Prednisone with cataracts; scars on my legs and arms because my skin just pulled right off if I brushed against something. Lost 30 lbs. BEWARE MISDIAGNOSIS
2
After a diagnosis of PMR 2.5 years ago at 65 apparently with the normal clinical symptoms (ache in neck, shoulders and hips) I had an almost immediate positive response from prednisone. Hoping the condition would end I moved to methotrexate and plaquenil after a year or so of steroid treatment. Symptoms then shifted and I've recently been diagnosed with Rheumatoid Arthritis. I'm now on Actemra which is effective at bringing my inflammation markers to nearly zero however I still have aching, tight feet, ankles and hands. I distinctly recall a chest infection that was unusual in its persistence before the first symptom (aching neck). I'm hoping my immune system will one day switch back to 'normal'.
12
Jim, I'm still under rheumatologist care & recently had symptoms similar to yours. My blood tests show positive ANA, but all other tests "unremarkable." Glad to hear of your treatment with newer drugs. Prednisone withdrawal was a nightmare.
1
@Miss Prism
If you read this, can you respond with more info. you learned re: your high ANA ? I have an astronomically high ANA and docs don't know why.......
@Molica My PMR was diagnosed by high CRP level (in addition to muscle weakness, pain in neck & hips, fatigue, weight loss). That was at age 52. Now, at age 62, I recently had another post-workout incident that made me think the PMR had returned. I also had very swollen feet & ankles, pain in hand joints --- not normal for me. My rheumatologist ran a long list of blood tests. I think he was looking for lupus, Sjogren's or RA. However, all came back within range except for the positive ANA. My understanding is that indicates an autoimmune reaction somewhere in my body, but he can't narrow it down. I dont know if the ANA is low or high. My latest symptoms subsided, but I'll call him if something changes. I think if I knew I had a very high ANA, I'd request more extensive exams/tests. My understanding is that some autoimmune conditions can lie dormant and do significant damage before they're diagnosed, e.g. Sjogren's. Hope that helps. Good luck.
i went to this same practice and was treated successfully by Dr. Swerdlow. for polymyosits which took several years to diagnose with a muscle biopsy followed by a treatment for one year with prednisone.
3
I was diagnosed with PMR at age 52 -- young, but of Northern European ancestry. After a normal workout, woke up next morning feeling as if a bus had run over me. Couldn't turn my head. Luckily I was an established patient of an allergist who was also a rheumatologist. He immediately tested for elevated CRP. My case was stubborn -- taking me thru 5 yrs of prednisone, methotrexate and plaquenil. Sleepless nights, mood swings. Though some recover in weeks, PMR is no joke. I had excellent insurance, but missed so much work I had to take early retirement.
23
@Miss Prism Me too! I'm 2 years in. Agree PMR is no joke. I was diagnosed with PRM at 51 by a great orthopedic surgeon I was seeing for a twisted knee that would not heal after months of PT. I think this injury triggered the PMR. One day I awoke at 3 am in excruciating shoulder pain and could not raise my arms or lift my legs (severe, stabbing disabling shoulder and hip pain if I tried -- pain you know well). The ortho suspected PMR and sent me to a rheumatologist. I had to start at the GCI dosage of prednisone (40 mg) when PMR dosage of 20mg did not work -- I've read this happens in us "younger" patients. I had to switch to the metabolite Medrol to address side-effects, and I'm also on methotrexate. I'm working so hard to get off, dealing with severe muscle weakness, thin skin and other side effects of the steroids that I love/hate: love that I can function and use my arms and legs, but hate side effects. And of course, I look totally healthy (except for my round moon face, buffalo hump, extra 40 pounds and challenges going up stairs and lifting a gallon of milk or anything else). For all of my PMR peeps, hang in there and a find good rheumatologist.
8
@KM Love your positive outlook. As I was reading, I was thinking "yep, yep, check ..." because your experience is so similar to mine. I've lost most of the weight. More importantly I'm able to swim some laps & take a twice weekly rehab pilates class -- and have energy left for household chores. :)
2
@Miss Prism You go girl! I had some very dark days in the first year, especially before switching to the Medrol -- prednisone caused depression unlike anything this glass-half-full person has ever known. After my eye doctor gently pointed out at my annual exam that I was clearly not myself, a dear friend happened to call me on one of the worst days and encouraged me to brainstorm solutions as I would if it were her facing this. My suburban rheumatologist was treating me as she treated PMR patients in the "average" age range, but my online research showed I might need a more creative approach. I found a new rheum in NYC, where clinical trials for new drugs were being conducted, and went to her with the hope of getting into one. Instead, she had a trove of dosing tricks to help me manage the steroids better. She switched me to Medrol (just a metabolite of presnidsone, meaning it's what your body converts prednisone into to use it, but it made a huge difference). She split my dose to morning and night. She devised a sllloooowwww dose reduction plan, changing the evening dose first, then adjusting morning and evening, with 4+ weeks to adjust each time. Probably most importantly, she explained to me that for several days after each reduction I would feel just terrible, but if I could push through, my body would usually adjust.
3
My husband got this at about age 68. It’s genetic and his mother had the same illness. There’s actually a spectrum where Polymyalgia is the lightest severity and Giant Cell Arteritis is the worse. He was towards the bad end. It took a couple of very difficult months and misdiagnosis before he was properly diagnosed. Started at a very high dose of Prednisone (believe 65mg). Immediate symptom relief. He had to also take Fosomax to avoid osteoporosis. Gradual tapering of the dose until he was totally off Prednisone after one year. He’s 75 now and doing fine. A strange and extremely debilitating disease- we called it the Tin Man Syndrome since he was frozen like the Tin Man in the Wizard of Oz.
27
I was diagnosed correctly for PMR, however I delayed seeing a physician and self medicated with ibuprofen until I could not get out of bed.
A rheumatologist correctly prescribed steroids and I felt better in just three days. Temporal arteritis was ruled out after a biopsy.
The high dosage of prednisone worked, but the side effects included high blood sugar, weight gain and insomnia. The prednisone in such high amounts caused paranoia and aggressive behavior. As the steroid dosage was reduced, the side effects were reduced, but the PMR symptoms returned.
ACTEMRA usually prescribed for rheumatoid arthritis has had some early successful trials and data on treatment for PMR. I received several monthly infusions and improved significantly. My insurance covered 80%, but the copays were several thousands of dollars. The good news: ACTEMRA was so successful I was able to avoid steroids.. The bad news: I no longer have credit and filed for bankruptcy. AND I have not had a flare-up in four years plus.
56
For patients to get help with access and/ or funding for ACTEMRA:
Genentech has a program to assist qualified people with copayment.
See clinicaltrials.gov for participating in clinical trials.
Best wishes.
19
@Joel H
My rheumatoligist has a full time staff researching trials and Pharma assistance in order to assist patients with the high cost of biologic treatments.
Being on a Medicare advantage program, I did not qualify for Genentech assistance, and missed out on ongoing clinical trials in progress.
According to the data, I am one of many self sufficient elder patients with insurance who have not been able to afford medication co-pays resulting in bankruptcy.
22
@AGolan Medicare Advantage is an HMO in disguise. HMOs were foisted upon the general population years ago, and roundly rejected due to their network limitations and onerous preapproval requirements. Now the for-profit medical care system is successfully foisting this same system on the elderly, with the help and approval of government entities. It's fine if you don't have major medical problems, but if you do, watch out!!! You may well end up bankrupt like AGolan if you insist on the care you need.
8
So, did anyone school those initial rheumatologists in how to provide more effective treatment?
What’s the proper protocol for doing so?
14
A severe side effect from Prednisone and other steroids is a condition called Steroid Induced Myopathy in which muscles are damaged. Extra caution should be taken when on steroids to avoid this condition since it is not reversible in all cases.
19
In my case, a severe undiagnosed UTI, coinciding with high prednisone use and Actemera due to TA led to prednisone induced myopathy this past month. I have just been discharged from a rehab hospital getting 3 hours of therapy daily. My thigh muscle weakness is nowhere near recovered but I can slowly walk with a walker.
9
@Cynthia Singer
I, too, was finally diagnosed with TA (Takayasu's arteritis), a rare form of vasculitis, after many years of medical neglect. (Giant cell arteritis is a more common form of vasculitis.) After 2 years of high-dose steroids without any therapeutic benefit and several major operations, I came across a very small (N of 2) study publication of tocilizumab (Actemra®) in TA that had 100% efficacy, and convinced my rheumatologist and health insurance to switch me to tocilizumab. I have been in remission ever since (about 10 years). Unfortunately, the 2-year steroid regimen devastated my muscle mass and I can no longer consume more than 1000 calories a day without gaining weight (we need muscle mass to process consumed glucose calories into energy or they will be stored as fat). Tried physical therapy to rebuild my muscle mass, but the therapist wasn't trained to provide that therapy. I am trying on my own to rebuild my muscles, with very limited success. Nevertheless, I consider myself very fortunate that I have the skills to treat myself. It is the patients whose skills lie elsewhere, who are not equipped to advocate for their health, that I worry about.
11
@Jacquie. My mother was a nurse at the Manhattan VA. Bellevue 1932! Returning from a visit to a son in PR, she told a resident doctor on her dermatology about her headaches that she thought were a prelude to a stroke. Some how he diagnosed temporal arthritis, correctly. Predizone. Aka the orthopedist’s friend because of the fractures it causes, better by far then the stroke or blindness the condition could cause. God bless the diagognostian.
1
There is one other side effect of prednisone that my family became unhappily aware of after my brother's liver transplant. He needed large doses of prednisone to prevent organ rejection. This previously even-tempered man became very quick to anger at the smallest things. Turns out that is a well known possible, indeed common, side effect of prednisone.
That said, it was better than the other answer, and as the dosage was very, very slowly decreased things got better.
23
The good news that the conditions CAN be treated - - followed by with the bad news that the treatment - symptomatic treatment - is extensive use of prednisone.
I wonder if there are any insights into interrupting the course of the diseases in any other way? Or if the triggering of the immune system can somehow be prevented? Or ( I guess as with all of the immune system anomalies) what it was that set the stage for these reactions.
7
@cheryl
Every patient diagnosed with PMR MUST be properly tested for an infection with Borrelia (Lyme Disease).
Many biopsies of the Temporal Artery clearly reveal the actual spirochete (Borrelia Burgdorferi).
The slides need silver stain to identify the spirochete. This infection must be treated with appropriate antibiotics.
Steroids are contraindicated when an infection is present.
Alfred Miller,M.D.
40
@Alfred Miller,M.D.
Dr. Miller...from what you are saying, are we to believe that the blood test for Lyme Disease is not adequate to tell us if we have Lyme Disease?
I’ve had 3 negative blood tests for Lyme Disease over a number of years.
1
Prednisone as a medication works fantastically but can have some significant near-term issues including sparking an episode of shingles, which is no joke. Everyone ought to get vaccinated with Shingrex to avoid Shingles, which is relatively common.
My advice to people with potential immune system issues is that if they have a doctor who's making good progress in diagnosis, do that. But if you're encountering lots of uncertainties and having trouble locating the right specialist, you can help identify inflammatory conditions by doing some tests yourself. Namely CRP, TNF-a, and Interleukin-6 (the drug mentioned in the last paragraph, tocilizumab, targets Interleukin-6.) You can order all on your own through one of the on-line websites and get results back through Quest or Labcorp. Costs a little ($100-200) for all three but letting inflammatory issues go unchecked is not a good idea.
If these are elevated, you know something's up and can show the results to the doctors, helping them figure out what's going on. (It would also help a lot if you knew your "normal" numbers for these inflammatory markers, so getting these done when you don't have problems might be useful.)
22
@Paul B
While researching information for my mother (35 yrs. ago) who had painful arthritic symptoms, I came across a book by rheumatologist Thomas McPherson Brown entitled The Road Back. The book didn't help her as she had other more serious symptoms going on, but I held on to the book. Last year, I became incapacitated by symptoms of some form of rheumatoid arthritis. Unwilling to take Prednisone, I contacted a doctor that I found on The Road Back Foundation site. After testing (CRP, etc.) my doctor put me on Doxycycline, 100 mg. three times a week--no side effects. Have gone from being unable to get out of bed to actively tending gardens, mowing lawn and the total upkeep of my pollinator-friendly plot of land. I'm 80 yrs. old and able to work outdoors daily.
Check out The Road Back Foundation site. One must become one's own advocate.
45
Very valuable information. I was just 53 when I got PMR and because of my relative youth was misdiagnosed several times. Fortunately an older doctor recognized it and tested me. Important to note that for some people it's difficult to get off prednisone entirely, so more than 10 years on I'm still on very small doses, with minimal side effects.
18
@M. Hirsch I was the same age as symptoms began. I would think "so this is what getting old feels like." Then the pain became so specific I began Googling my symptoms. It wasn't until I added "low grade fever" to the list that PMR showed up. The internist in Pittsburgh listened, took blood and gave me a script for a low dose of prednisone and told me that if it's PMR I should feel almost back to normal the next day. And I did.
I tell people that two of the odder symptoms are 1. needing to unfold your body to stand up even after a short car ride and 2. the inability to take off a t-shirt over your head. (both symptoms noted in the PMR pages on the Internet)
It's a shame more people (including doctors!) are not more aware of this debilitating disease and don't get treatment immediately.
18
I was diagnosed with both diseases, eventually. My PMR symptoms were minor but my inflammation markers(SED rate and CRP )went thru the roof. I was treated for PMR with a minor does of prednisone, which seemed to help, but I developed severe headaches and lost peripheral vision in mky left eye. I was put on a prednisone drip in the hospital and then large dose of prednisone for about 5 years. No reoccurrences but lingering side effects from the prednisone. I still must have blood test every few months to check CRP levels. Anybody with new and different type headaches after age 65 should see a rheum. or ask their doctor for inflammation marker tests. Don't risk vision loss.
13
Years ago, groundbreaking research was done on both these diseases by Dr. Harry Spiera at Mount Sinai. He retired not so long ago when he was well into his 80s. Fortunately, along with being a superb clinician, he was a renowned professor. So important to find the right doc when diagnosed with these diseases. Thank goodness Dr. Spiera was instrumental in the formation of many. (Including his son, Dr. Robert Spiera!)
35
@Liz Farishian My mother was treated for temporal arteritis by Dr. Robert Spiera after vision loss and misdiagnosis by two other doctors. He is an excellent clinician and a mensch.
4