Male early 60s. I was on prednisolone from Aug 2019 to July 2020, tapering down from 15mg as per rheumatologist schedule. I also gave up alcohol and sugar, most red meat at that time. (Loosely followed Mediterranean diet). Did 10-15 mins yoga most mornings and some light cycling.
Now from Nov 2020 I am having a significant flare up, suspect I gave my shoulders a bit too much of a work out. Has anyone managed flare ups with NSAIDS only? I would really like to avoid more steroids.
I notice on this forum that there are some claims that not treating PMR with steroids will a) make it worse and b) increase the likelihood of GCA. This is contrary to what I have read elsewhere, i.e. that steroids do not alter the course of PMR, that GCA is a separate disease, and the low doses of steroids for PMR would not protect against GCA. I am obviously very keen to avoid GCA, has anyone any insights/links on this?
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Fair question.I am having difficulty pasting the link from my phone, but if you paste the below into google you should get it. Long article but touches on the 3 things I mention
Thanks, the bits I identified are below. I value your input. Wouldn’t wish PMR on anyone. I’ve seen my GP about it recently but haven’t gone back to the rheumatologist yet. I’m not going to be a martyr to it, would like to understand the risks better though. I had no side effects from the prednisolone but am concerned about the longer term effects of a the cumulative dose.
“The cause of PMR is unknown. PMR is closely linked to GCA, although the two are believed to be separate disease processes.”
“ Patients should be monitored for symptoms or signs of arteritis after treatment initiation, because low-dose corticosteroids such as prednisone do not prevent progression of PMR to GCA. “
“Corticosteroids are considered the treatment of choice because they often cause complete or near-complete symptom resolution and reduction of the ESR to normal. However, they do not cure the disease. The low-dose corticosteroids used in PMR are almost certainly ineffective in the prevention of vasculitis progression.”
Yes you’re right about me wanting to hear positive tales of coping without steroids. I will go back to the rheumatologist as well and quiz her about the risks of avoiding them. If it’s just pain and misery I can put up with that😊. Thanks for all your feedback.
Are you sure you can put up with it indefinitely? I had had unmanaged PMR symptoms for over 5 years before a 15mg starting dose took me from considerably disabled, I had to crawl up stairs and couldn't go out unless it was in a car. I was (wrongly) stopped from driving for some months - as a result was housebound and very depressed.The disability of unmanaged PMR leads to depression, immobility which is a major risk factor for weight gain, osteoporosis, hypertension and diabetes - all claimed adverse effects of pred. I have none of them after ofer 11 years of pred, mostly above 10mg/day, never above 15mg. Not to mention the unmanaged inflammation which in itself does damage to the body tissues, especially blood vessels, increasing the likelihood of peripheral vascular disease and cardiovascular disease. NSAIDs almost never touch the pain - while having their own considerable adverse effects when used long term.
That’s a lot of pred you’ve taken, encouraging to know that you have had none of the side effects. And of course you are correct about NSAIDs having their own ill effects
One lady was told by her GP to use NSAIDs for her "mild" PMR - after 3 doses of ibuprofen (which did nothing for the PMR) she was delivered to A&E with a coffeegrounds gastric bleed - no NSAIDs ever again.
Hi and welcome. To be frank, there will be many hands thrown up in horror at the suggestion that you don't need steroids for PMR. Nothing else will manage the disease. PMR is a systemic disease for which there is no cure. When the inflammation in your body is sufficiently reduced and you are pain free you will be in remission and unless someone in the future comes up with a magic solution, Prednisolone is the only thing that will enable this. Diet and exercise taken with caution are important but alone will not, I repeat not, give you the results you should be aiming for.Please take note of the truly wise advice that experienced members will give: that will be of enormous benefit.
Thanks, note I am not suggesting that I shouldn’t have taken them the first time around. I was a model patient (I think anyway) and followed the medical advice to the letter as well as modifying my diet. Since July when I came off the prednisolone things have been pretty good, with a few twinges. I am currently experiencing more than a few twinges, and am deciding at what point to go and hand myself in to the rheumatologist.I have used NSAIDs (naproxen) for a total of a few days over the last 2 months, with my GPs approval. I may well end up back on prednisolone but would like to be fully informed of the risks of managing without, and avoiding the potential long term damage of steroids.
I understand. You are absolutely right in wanting to be fully informed of risks v benefits. An appointment with your rheumatologist should be your next step.
Most of the adverse effects of pred can be managed or mitigated when you know how. Many doctorss do appear to be unaware of that! But pred has given me 11 years of a good quality of life instead of now possibly sitting here after 16 years of misery. I have no signs of osteoporosis (regular dexascans and NO bisphosphonates), diabetes or other problems. In addition, during the 5 years pre-pred the autoimmune part of the disease caused damage to the elctrical cells in the heart and I suffer from atrial fibrillation. It is far worse during a flare and/or at lower doses of pred. Pred isn't half as bad as some people will paint it and judicious use can be a life-saver.
You may have been a model patient....but unfortunately the disease is not model.....and your reduction was super fast. Very rarely is it gone in under a year....which is why it’s resurfaced.
NSAIDs have their own issues- sometimes more serious than a lowish dose of Pred.....and they don’t usually “do” much for the underlying illness. At least if you are on prescribed Pred, you are usually monitored - on self medicated NSAIDs you are not.
Pred is not all bad! In fact it very often gives a much better lifestyle - chronic pain is very debilitating in its own right - and should your untreated PMR result in GCA - very likely despite what you might have read - it could save your sight.
Take it from an ex patient who spent 18 months in excruciating pain and loss of sight in one eye through a very late diagnosis - oh how I wish I’d been offered Pred at the beginning.
GCA only - 4.5yr on steroids, now almost the same off it...no long lasting side effects...enjoying life to the full (despite monocular sight)
It is my understanding that you never really get better - rather go into remission. It seems likely that I will be put back on the pred - not the end of the world. And any signs of GCA - straight onto 60 mg I would expect.
IF you can persuade a doctor that that is what it is. And that isn't guaranteed.
You do recover - at least, well over half do. The "in remission" is the same as when the term is used in cancer - the propensity for the immune system to go haywire remains it is thought.
GCA isn't a separate disease - it is a point on a spectrum and can exist alone or together with PMR symptoms or PMR, more commonly, may be seen in isolation:
PMR may be the first sign of GCA developing - and the progression (for want of a better word) can happen at any time, at the start or even years down the line. But they are not the disease - they are the visible/experienced symptoms of an underlying autoimmune disorder. Like all a/i conditions they come in various guises. If you are a person where it is going to turn into GCA, then reducing the accumulation of inflammation is going to protect you from developing the worst aspects of GCA because the blood flow to the optic nerve is less likely to be obstructed.
I would say that your underlying cause is still active - the timeline of what you describe is pretty typical. PMR is not a short-lived disorder, it may last anything from under a year to for life with a mean duration of pred management of just under 6 years. Only 1 in 5 are off pred in a year, 1 in 3 by 2 years. That leaves it more likely you still have PMR. You may have required ongoing management with as little as 1mg/day to eliminate the small amount of residual inflammation being created each day - but even a tap dripping at 1 drip per second will eventually fill a bucket and overflow. You are not alone - quite a lot of people have tapered off pred having been convinced the PMR is gone because the blood markers were low, only to discover 4 or 5 months later that no, it had still been lurking.
Prof Dasgupta, a world authority in the field, told us a few months ago that he often keeps patients at 2 to 3mg indefinitely as it reduces the risk of relapses and has no adverse effects - whereas returning to higher doses may do.
I think it is fair and pertinent here to say that living with the disease and collecting the respective t-shirts of disability and loss of vision really does put a slightly different slant on the theory we gain from articles written by doctors who only see their side of the consulting couch ...
I had scalp pain and jaw and thigh claudication for a couple of months, long before I had any idea what it meant, but it resolved. It does happen, starts up but then the a/i part dies down and even aborts altogether. 12 years ago they hadn't come across that but they do acknowledge it now.
Yes if I got that I would run to the rheumatologist as fast as my currently painful ankle would let me. Reading one of the academic publications on this post, I gather that you don’t always get the classic symptoms either. Monitoring of CRP seems important.
Some consider CRP important - mine only ever rose once, on a day when I had some severe arrythmia/tachycardia symptoms. The following week it was back to normal again. Up to 20% of patients with either/or/both PMR and GCA never have acute phase markers (CRP and ESR) that rise out of normal range. That doesn't mean that they aren't high for them, my ESR is normally low single figures, for several weeks during a severe flare it ran at 16-18 - high for me, but nevertheless still in normal range for a large population. It has been said that ESR may be the better monitor in PMR - but every patient is different and it is important to know your body, your signs and symptoms and your response to pred. Often people find their markers don't rise while they are still on pre, even at a low dose, or that they lag a long way behind events.
Unfortunately there’s no magic bullet for pmr however much we search for one. I sometimes feel the more I read and learn, the less I know about this capricious and inexplicable disease.
Which merely shows how little you are aware of the practices in the field. In fact, all those 5 authors are world leaders in the field, from 4 different countries and all heavily involved in research and drawing up the international guidelines within a very wide field that involves several disciplines. In this particular paper, they will all probably have contributed equally for their own particular specialist area since it covers 3 quite different presentations of this form of arteritis as well as various diagnostic aspects.
Within science in the USA I have no doubt that ego encourages contributors to hog what they consider the limelight, not least because of seeking funding for future work - but, having known 3 of them personally, I can assure you that none of them suffers in that respect. Added to which, by the time you are within a few years of retiring, especially in Europe, you are really far less bothered about adding to the list of publications in your CV as you won't be seeking funding. They are/were all working within healthcare, not pure academia, and that also makes a difference.
That’s very interesting, you will find many ‘Expert’ Patients on here who have had/have either PMR/GCA or both &/or LVV some for considerably longer than the expected average length of time of the condition.
There is a wealth of knowledge in the disease, it’s treatment, the Medications & the management of the disease.
You will find a lot of resources available on here alongside a vast wealth of experience. Plus a Professional Relationship between the Consultants & Experts in the Field(s) alongside many of their Patients who are Members on here.
I am new to this wonderful informative site. I have struggled with PMR since 2015 at age 65 and received initial damaging medical attention (25 and 30 mg of prednisone and back injections that resulted in acute spinal contained osteoporosis and 4 major compression fractures resulting in vertoplasty. Finally traveled to Mayo Clinic whose great rhemotology team got me on the right track. Lowered and ultimately weaned off pred 8 months ago and had for the first time in 6 years a return to a body strength and pain free vibrancy I remembered. 3 weeks ago it appears PMR has returned with a vengeance. I go back to Mayo next week. I mistakenly thought the disease had a fairly predictable lifespan but that was ignorant wishful thinking. I do appreciate thrust site and its informative posts. I have deep concerns regarding longer term use of prednisone and interested to hear other opinions. Thanks for listening. Promise my future posts will be more contributory but I thought it was important to introduce myself to the community.
I am new to this wonderful informative site. I have struggled with PMR since 2015 at age 65 and received initial damaging medical attention (25 and 30 mg of prednisone and back injections that resulted in acute spinal contained osteoporosis and 4 major compression fractures resulting in vertoplasty. Finally traveled to Mayo Clinic whose great rhemotology team got me on the right track. Lowered and ultimately weaned off pred 8 months ago and had for the first time in 6 years a return to a body strength and pain free vibrancy I remembered. 3 weeks ago it appears PMR has returned with a vengeance. I go back to Mayo next week. I mistakenly thought the disease had a fairly predictable lifespan but that was ignorant wishful thinking. I do appreciate thrust site and its informative posts. I have deep concerns regarding longer term use of prednisone and interested to hear other opinions. Thanks for listening. Promise my future posts will be more contributory but I thought it was important to introduce myself to the community.
Sorry to hear about the return of your PMR, sounds as if you are having a worse relapse than I. I share your concerns about prednisone (I was on prednisolone, which doesn’t require your liver to process, it seems in the US prednisone is more common).
I have been an all versions, plain prednisolone, enteric coated prednisolone, methyl prednisolone (awful) and prednisone in the form of Lodotra (delayed release format) for the last 6 years. No difference between prednisolone and prednisone for me.
What is the situation in Australia regarding the one steroid sparer that studies have shown encouraging results for - Actemra or Tocilizumab as it is called here. I developed GCA/LVV when I was on 3 mgs of Pred after about 4.5 years. Always tapering slowly and pacing my activities, I felt sure that PMR was going into remission. I began to show other symptoms and felt generally unwell , I dreaded the prospect of going back on high dose steroids. My Rheumatologist fought for and won 12 months of Actemra and wanted me to taper off my high dose Prednisalone. I had developed Steroid induced Diabetes, high blood pressure and the beginnings of cataracts, weight gain too. I have self administered, subcutaneous injections of this drug. The above listed side effects have normalised or improved. I still seem to need 10 mgs of Pred although the taper from 40 mgs was swift and easy. It is an alternative that works for some patients. Others have had results from Methotrexate or similar. I believe I am protecting myself from the harmful effects of unchecked inflammation , and the effects of long term steroid use at significant doses. It is my hope that I made the right choice. My respected Rheumatologist is confident that I have. Time will tell.
Hi there, yes it seems low dose pred does not protect against GCA. From reading your profile I gather it was headaches that alerted you to the GCA?I don’t have a full answer on the Actemra etc, but I think it would be what my rheumatologist mentioned as an expensive alternative only available if steroids and methotrexate didn’t work. As my liver consistently shows high enzyme levels, she was concerned about methotrexate for me as a plan B if steroids didn’t work, and was thinking a step ahead. As it happened, steroids gave relief, and I noticed no side effects. My starting dose was 15mg though, tapering to 0 over a year. I’m sure 40mg would be a different matter. I was encouraged to get off the pred ASAP.
How does she define asap? You need pred for symptom management as long as the underlying cause of the symptoms is active - that is what governs how long you need it. Not the doctor's desire to not use pred.
The schedule I followed per her guidance was in accordance with BHR/BHPR recommendations, per my further research at the time. During this period I was monitored both by physical exam and blood tests, and the tapering was all trouble free. So ASAP in this case was as soon as the symptoms went away.I must say I feel I’ve had good medical advice, GP identified possible PMR as soon as I described the symptoms, and warned me about GCA. Straight off for blood tests then rheumatologist.
I will be going back to the specialist, but all the responses to my initial query have been interesting and informative.
asap once the symptoms have resolved means for the tapering to start. NOT to get off pred altogether. You are never tapering/reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the original dose did - that is a process called titration and is used for other medications as well but usually the other way round, starting with a low dose and increasing until the desired effect is achieved. That doesn't work in PMR, you are forever playing catch-up and gaining little benefit from the early pred while still having adverse effects.
Every suggested tapering regime in the medical literature comes with the caveat that the tapering approach must be adjusted for the individual patient in line with the result and their signs and symptoms, whereby symptoms always trump lab results. There are very few doctors at any level who appear to have read, noted and inwardly digested exactly what that means. The numbers are rising though - because patients are finding a voice and explaining the problems experienced through these theoretical approaches to tapering and management of PMR. They appear to think that pred in PMR is used in the same way as it if often used in other rheumatological disorders to suppress a flare in inflamamtion until the usual medication, usually DMARDs, kicks in or is adjusted. They forget that, for PMR and GCA, pred is the equivalent of the DMARD and can't be just thrown away as soon as it achieves an improvement in symptoms. That isn't true remission - that is drug-induced remission. Not the same thing at all.
Pred really suited me from the get go, until it didn’t. The steroid induced diabetes and raised blood pressure and possibly the start of cataracts were all symptom free. We are talking getting on for 5 years. It still feels like the most effective drug I have ever taken and feel as if I am working in the dark on Actemra. Good luck with all your efforts to keep fit though and I empathise with your desire to break free of steroids.
I took coated Naproxen (NSAID) at a dose of 1000mg per day for 6 months after PMR symptoms emerged, but before I was diagnosed. It barely made a dent into the pain and stiffness (that actually progressed up my body during that time). So it did not help with PMR. With the 4 flares I’ve had in the last 2.5 years, increasing pred was the only thing that helped. Of note, I used a burst of pred doses each time, increasing my dose by 5mg and then lowering by .5mg per day until back down to original dose. No way I could manage my PMR without it.
As far as GCA, I was advised by my former rheumy and my GP to be mindful of symptoms as long as I have active PMR.
Interesting thanks. So I gather that you have a ‘base’ dose of pred and increase it when you have flares? What is the usual amount you take now, and do you plan to taper off it?I have naproxen 500mg tabs and find that even taking one will improve things substantially, so I use them sparingly i.e. one on a bad day. I took one yesterday for the first time since before Christmas.
In that case there has to be a big questionmark as to whether the diagnosis of PMR is entirely correct. I'm not saying you don't have PMR - I'm saying that it could be on top of something else or that while the original diagnosis was made in good faith, something either may have been missed then or has developed since.
There is a range of diagnoses that come with a polymyalgic onset including late onset RA and the spondyloarthropathies which often respond well to Naproxen - especially ankylosing spondylitis which can manifest in older patients with a polymyalgic presentation. Once the diagnosis is made, the anti-TNF biologics are used and they are very effective.
Many thanks for your input on this, it is significant that you and others have not found naproxen effective.
On the one hand:
PMR symptoms were fairly classic as I understand it, with sudden onset bilateral shoulder pain and stiffness, not being able to raise arms above head, and pelvic girdle stiffness and pain; difficulty getting out of bed or up from sitting, and high inflammation markers.
The prednisolone gave almost full relief after 48 hours (15mg).
With regard to RA, I tested negative for RF factor and CCP antibodies, with the qualifier that these tests do not necessarily exclude RA.
ANA test for lupus also negative.
I'm rather old at 62 for the onset of ankylosing spondylitis (but I note your comment above re "manifest in older patients").
On the other hand:
There is some RA in my family.
I have the HLA-B27 gene and there was some evidence of possible AS related damage in my thoracic spine on the scans.
I have had blood tests today to check inflammation markers, among other things. This will no doubt kick off another round of specialist visits.
In the meantime I am still feeling half normal after one 500mg naproxen 2 days ago so I shouldn't complain.
I started on 20mg of pred 2.5 years ago. Since then I’ve managed to lower to around 10mg without much problem, however under 9mg resulted in flares (and my ESR and CRP would rise as I lowered my dose - I get bloodwork monthly).
This year I was at 10mg around March and this time I am tapering VERY slowly by .5mg every 8 weeks or so and then staying at that dose for a month or so, and I’ve managed to get down to 9/8.5mg for the first time without my markers going up. Therefore I’m hopeful to finally get below 9mgs. My GP encourages me to get to 5mg as a goal (instead of racing towards “0”).
If Naproxen provides relief, perhaps you have something other than PMR??
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