I’m looking to hear from anyone who has PMR and declined prednisone treatment?
I was suddenly and dramatically incapacitated with PMR October 2023 . GP gave me this provisional diagnosis. Wanted me to do a prednisone trial . Being a registered nurse I understood the damaging potency of prednisone and without a definitive diagnosis I declined prednisone. Rather I started on Celebex 200mg daily. (Prescribed non steroidal anti inflammatory)
I found I could manage pain on Celebex , the fatigue was still considerable .
December 2023 rheumatologist gave me definitive diagnosis of PMR. Although by this stage I was feeling quite well / functioning well on Celebex . However he insisted due to my raised C reactive protein & ESR I would not be able to continue without starting 2yrs of known damaging drug therapy of prednisone / methotrexate ( chemotherapy drug )
This still didn’t add up with my own risk benefits analysis . I declined his treatment.
( although it’s great to know this serious treatment is available should I ( or others ) be ill enough to require it )
So 10 months after my first debilitating PMR symptoms I still have not felt my symptoms are severe enough to start prednisone treatment. I have also been able to comfortably cease Celebex .
I definitely still have some muscle pain/ stiffness mostly upper arms and neck , can be thighs sometimes. Night time discomfort is probably the worst of it , but as soon as I get up and start moving I feel better.
neurofen before bedtime often helps.
The fatigue that began in October 2023 has lifted .
My real question is if anyone has managed PMR without Prednisone ( such as I have to date ) how long did their PMR symptoms last ??
Or just happy to hear of anyone out there with PMR managing without the usual Prednisone treatment.
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Fromdownunder
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Several people have mentioned they have tried other things on this board over the years, but normally they end up on steroids. That includes a couple of people who practised complementary medicine. Trying to fight through without steroids can leave you open to GCA when you could lose your sight. I probably carried on without steroids for at least six months as it was not diagnosed. I kept being told it was a virus. I resorted to going privately in the end to see a rheumatologist.
Thanks for this info piglette. Luckily my PMR symptoms and pathology continue to improve with no treatment other than neurofen as required. I’m monitoring closely.
According to my own research , and to my rheumatologist , prednisone treatment for PMR is not protective against Giant Cell Arteritis. There is aprox 20% incidence of GCA in ppl with PMR . And that’s a life time risk with or without prednisone, before, during or even long after prednisone treatments finished.
On the other hand long term Prednisone treatment required for PMR raises risk of cataracts and glaucoma down the track , both can lead to blindness. The increased risk of prednisone induced diabetes, hypertension can also result in eye problems/ blindness as well as cardiovascular and other serious vascular problems in general. And that’s not mentioning musculoskeletal degeneration to be expected from long term prednisone, even low doses.
Life is good at the moment, PMR is not holding me back in my daily life, not stopping me doing housework, carrying shopping, walking locally every day, travelling including long haul flights , running around with the grandkids… .
That said of course I’ll take rheumatologist advice, and take Prednisone/ methotrexate/ biologics if needed. I’m / were luck to have treatments available to us . Definitely not advocating others to not get needed treatments if risks benefits add up .
According to my own research , and to my rheumatologist , prednisone treatment for PMR is not protective against Giant Cell Arteritis. There is aprox 20% incidence of GCA in ppl with PMR . And that’s a life time risk with or without prednisone, before, during or even long after prednisone treatments finished.
Partially correct.. the dose used in PMR will not be enough for GCA... and the 20% of patients quoted is not a given, between 15-20% may go on to have GCA, but that means 80-85% don't.
It's not necessarily a life time risk once the PMR and/or the GCA have gone into remission.. and in the majority of cases both do. You may get through PMR without Pred, but not sure your quality of life will be brilliant, but that's your choice of course. Many have got through it due to not being diagnosed in days of yore. Plus there a various forms, some much more debilitating that others, if yours is the 'kinder' version you may get through it more easily.
But the risk with GCA if it is not being treated is blindness, and if GCA-LVV, the Aorta may be affected with all the issues that may bring.
Having been untreated for 18 months due to a misdiagnosis , I lost the sight in one eye, and without prompt action and high doses of Pred may well have lost the other. My GCA has been in remission and have been off Pred for 8 years. No issues with Pred nor since. .
You can probably guess my view of Pred...😊
SnazzyD was also a nurse, and has clarified many points you have used in your argument again Pred… but of course we would all say at the end of the day - it’s your body, so your choice.
Who diagnosed PMR? The fact that neurofen helps could suggest that you do not have PMR. Apparently around 40% of people diagnosed with PMR do not actually have it. Trying steroids for just a week and you have a magical result will confirm you probably have PMR. I came back into the land of the living after 15 hours 26 minutes.
Hello. You may find lots of replies will come from those who didn’t try without and those who were forced to go without Pred and those who have actually had GCA. It sounds that just like me, you have gone through your career being aware of bits and pieces regards PMR/GCA, learned the scary bits about Pred without ever seeing the whole picture. If like me you have seen people in a dreadful state on steroids have not twigged that they have had different diagnoses with different treatment pathways. I also learned that bizarrely many Rheumatologists don’t understand PMR/GCA can be rabid against Pred, whilst those who are the leaders in the field who drive research have a different view. Rheumatologists as a whole, for some unknown reason seem to be ignorant of ways to reduce one’s side effect risks especially diabetes and weight gain. They can have a fatalistic view of life on Pred that can lead people to being miserable or mismanaged.
If your condition is truly improving then maybe continue with your current regime but do read about the risks of long term NSAID’s. If you are bumping along the bottom getting through by being very driven and determined I would beware.
Diabetes can be prevented in the majority with a low carbohydrate diet (not just ‘healthy diet’). Many of us have and I started on 60mg Pred for GCA and didn’t put on weight and my HbA1c was good.
Cataracts can occur but are easily fixed. Mine came on quickly but stayed mild and and never developed. Lots of people never get them or would have got them with no Pred. Sight loss can occur without warning too though it isn’t the rule.
Do read about large vessel vasculitis that can be silent leading to aneurysms with untreated inflammation. Before I got GCA my risk was apparently zero, but I nearly lost my sight.
Regards Methotrexate, yes it is used for chemo but the dosage is much much higher. Methotrexate use isn’t a given either.
Risk analyses can be tricky when comparing a % for one thing with a scary list without numbers.
I understand and am well aware of all of the above you mentioned. I don’t wish to come across as alarmist re long term prednisone and the associated damage sparing drugs required . I do understand the different and relative low dosages.
I monitor closely my PMR with rheumatologist and am hyper vigilant regarding any changes/ adverse effects of PMR ( or worse any signs of progression to GCA)
With regards to my current PMR condition perhaps I failed to include the various scans/ investigations I’ve had June this year that definitively cleared me of vascular involvement that can be associated with PMR / sub clinical GCA/ vasculitis .
PET scan showed nil large vessel inflammation/ involvement. ( including importantly aortic vessels)
PET scan did show areas of PMR inflammation shoulders and hips .
I’ve had thorougher cardiac investigations that revealed nil coronary/ carotid involvement/ disease. I have a zero cardiac calcium score .
My cholesterol ( both HDL and LDL) levels are in half the normal range .
Without prednisone my CRP has reduced from 95 ( when I was incapacitated Dec 23)
to 26 currently (correspondingly symptoms are reduced to minimal) but still CRP too high.
Long before PMR I’ve eaten a mostly vegetarian diet . Plenty anti inflammatory foods , lots of salmon!
I have a low BMI
I have never smoked.
I’m not diabetic and not hypertensive . ( take nil medication for these )
So with or without pred I have no modifiable lifestyle changes to make .
I take one adult dose of neurofen prn , maybe every other night . Which indicates how minimal my symptoms are . And not risky as far as gut bleeding/ upset / or cardiac risk is concerned. Definitely less risk than Prednisone.
What I was really asking is does anyone else share my experience, being able to manage PMR reasonably , with very few or no bothersome lifestyle altering symptoms, and without long term prednisone treatment. ?
And if there is anyone who can relate to this , how long do they think they had PMR symptoms and / or pathology indicating PMR activity.?
I’ve been diagnosed 10 months ago , symptoms and pathology have improved considerably with the conservative treatment I’ve described 😃
We get people occasionally deciding to do this, with diet and supplements particularly, but we don’t hear sustained success stories. Many of us were fit and healthy before this and some were high level competitors in sport. Because you have relevantly worded your title, you’ll see the list of related posts where the same topic has come up before.
It’s great you have had scans rule out LVV and GCA, so you know you are ok, at the moment. It is possible you’ve had some sort of reactive inflammation that is waning quickly and the NSAID’s specific action is sufficient. There are people who do have an easier run. Some have refractive disease and many have a steady uneventful journey to remission. It is easier to monitor if your markers come up quickly and reliably in relation to symptoms. For some there is a lag so symptoms are generally treated first, though some rheumy’s prefer the numbers only and those patients suffer. Some of us never get high markers. Before GCA hit I had had a year or so of various niggles that were fine with Paracetamol, then things changed one week but GCA really becoming undeniable in the last 48 hours. Do be vigilant.
Regards side effects, they really aren’t a given but are way way more likely if you start on GCA levels. As DL says, your body, your choice. We are all different, none of us have a crystal ball. I would urge you to be very careful not to succumb to slow creep deterioration because of fear because you have only been given horror stories about Pred. I guess when you are not crippled with pain it is much easier to see the gains in not taking it, I get that.
Some very interesting and informative replies, I joined the group on behalf of my late elderly mum who passed away in 2022 after being on Prednisolone for over 8 years having been diagnosed with GCA and losing most of her eyesight overnight.
What I have found interesting is the suggestion that not taking steroids for PMR could lead to GCA, mum had been diagnosed with PMR a few years before but at that time couldn’t tolerate Steroids and was only on Pred for a couple of months, we will of course never know if she’d stayed on Pred for the prescribed time whether it would have made a difference to her going on to develop GCA, we had never heard of the condition hence were not aware of the symptoms which she’d had for a few weeks I would urge anyone to be very aware of any signs because mum literally lost most of her eyesight overnight it was devastating for her and all of us too.
Interestingly this time once they got her on the correct dose mum did not have any of the side effects and was able to tolerate them for many years, I am 73 and have recently been having some muscle pain in my upper arms and am considering asking my GP for a blood test if only as a precaution and I would not hesitate to take steroids if needed.
Hi, I think that SnazzyD an DL have said it all but just to add from my own experience. I was diagnosed with PMR four years ago and are now very close ( with a bit of luck and following wind!!) to reaching zero. The possible side effects are just that "possible" not a given. Over my four years I have had no discernable side effects at all, if anything my HbA1c has decreased and remained at around 35 and never higher than 38 at the beginning. That is also without any major changes in diet and I'm not a vegetarian. My weight has remained steady at around 72kg and likewise not changed over the four years. I went from being virtually carried into hospital to very quickly having a relatively normal and good quality of life. Those little white pills gave me my life back and have continued to do so. DEXA scans also remained good. I think like many of us here I had put my initial aches and pains down to my OA and age rather than something new. However, if your present regime works for you then fine but please be aware that it may/can change very quickly.
Absolutely agree, thank goodness for Prednisone, it saves lives ,improves quality of lives , it saves eyesight and more .
But im not ill , I now barely any symptoms , and my inflammation markers are on a constant downward trend .
If I was ill / had loss of quality of life , was incapacitated, had even a whiff of GCA symptoms I’d (& my rheumatologist) would make sure I was on Prednisone .
I had 5 years of PMR without pred - but not through choice. The GP was incapable of diagnosing an otherwise textbook case as my markers, although raised for me, were not out of normal range. Never in that time did an NSAID give me the slightest relief. Fifteen mg of pred achieved a near miracle in under 6 hours and I am now under a world authority in the field and he is satisfied that, some 20 years after the first symptoms appeared, I do have PMR. I can only say that, had I not been offered pred 15 years ago, then I probably wouldn't be here now as I'd have found some way of topping myself because life was pretty miserable and without access to a car I could go nowhere. There is a post about my experience - it is something I wouldn't recommend to anyone. However - if you don't have debilitating symptoms and are happy using NSAIDs, why are you asking the question? I wouldn't want to use celebrex long term - I value my heart and kidneys too much. And my local pain clinic is pretty iffy about ANY NSAIDs as I have other back problems that are copable with at 200mg ibuprofen a day but they won't even condone that low a dose! It doesn't touch the bicep tendinitis that flares up at 6mg pred but is fully managed at 7mg - and without that I am totally disabled with the pain. Not practical as I live alone.
Pred is only protective against GCA if you are on a high enough dose and PMR doses are relatively much lower. However - it is said that PMR without any pred is 7x times more likely to progress to GCA than if the PMR is well managed. The incidence figures do include patients who are identified to have signs and symptoms of both PMR and GCA at diagnosis - that is surprisingly high to many.
However - all that said, you will find few here who managed their PMR as you indicate - by its very nature a support forum from a charity like this one attacts the patients who have problems, not the ones who don't. Most of us know the relief of taking a low to moderate dose of pred that gave us our lives back. If a single dose of a propietary OTC painkiller that everyone regards as totally safe managed symptoms, why would they go through the journeys many of us did to get the dreaded corticosteroids? The majority who come here terrified of starting the little white pills their GP or rheumy has offered them will try for a few months and then are in such a state they give in and have a trial. Few of them stop when they realise the difference it makes to their life. For most of us here, pred is our friend and the few who CAN'T take it for whatever reason struggle. One lady is pretty much confined to bed.
To be honest - if an NSAID works and the symptoms fade over a period of months as you describe, I personally would say it is likely it isn't the PMR we talk about but a polymyalgic presentation of (possibly) palindromic rheumatism which is a form of inflammatory arthritis with a peripatetic localisation. Or a reactive inflammatory arthritide which could appear much the same. And we have had members of the forum who actually had both.
What a great reply PMRpro. My dismal life changed within a few hours of taking my first dose 60mg of pred. I was going mad with the GCA symptoms and couldn't have continued in that state. I now realise that the reason why I had GCA was because I had undiagnosed PMR for quite along time. I was diagnosed with age, wear and tear, menopausal symptoms. I think those who chose not to take pred which does have side effects that diminish with reduced doses are nuts they have no idea what GCA will bring to the party. My rheumy is totally against NSAIDs and I found them pretty hopeless myself and they can wreck your stomach.
Correct drugs for the right ailments, totally agree NSAIDS are useless for PMR/GCA but Naproxen was one of the few drugs, apart from Co-Codamol that works/worked for my OA.
Hi, I think I may be relevant to your query. I am a woman, now 76. Like you, I am generally fit and have had a fortunate life with access to a good diet etc. I started my PMR journey in the midst of the Covid pandemic, when GPs were pretty difficult to get hold of except by phone. I had an atypical start, with severe night-and-morning-headaches that lasted for three months, but no other GCA symptoms. (This started a week after my second Covid vaccination in April 2021, which may have triggered the auto-immune reaction.) I had blood tests and my CRP and ESR were raised, but not catastrophically. I was not diagnosed with any named condition and was advised to take painkillers - ibuprofen took the edge off, but didn't get rid of the headache. Since the headache seemed to be associated slightly more with the left side behind my ear, I was sent for an MRI to eliminate the possibility of a tumour. I eventually had the MRI after a six month wait, and there was no tumour - and the ENT specialists who referred me were not looking for anything else.
Gradually, the headaches dwindled and were simultaneously replaced by pain in hips (my 'pain pants') and shoulder girdle. At my worst, I couldn't get out of an armchair easily or walk up stairs - I crawled. The middle of the day was always better - and I continued to go for walks outdoors as always. A year in, my GP, still over the phone, tentatively named PMR as a possible diagnosis, which was the first time I'd ever heard of the condition. I consulted Dr Google, rapidly discovered this website and gained a lot of knowledge from the experts here! But by that time, blood tests showed that my CRP and ESR were lower than before, so my GP suggested I 'wait and see'. Compared to the headaches, I was prepared to live with the level of pain, which I think must have been milder for me than what some on this site have described. I continued to take 1 dose of ibuprofen before bed, but (being aware of the problems with that) tried to do without as much as possible, and usually I was able to sleep. I felt that the pain was at least not getting worse, so I might as well keep going without pred if I could.
Long story short, I the pains was gradually eased by Christmas last year. In February I was briefly hospitalised for a bad viral chest infection (unusual for me) and - ironically, was given a week's dose of steroids, which certainly worked! I am now back to 'normal', whatever that may be for a 76-year-old. So the answer to your question about duration is that for me, it lasted about 3 and a half years. So far. There's no guarantee, of course, that it won't return at some point.
I should add that if, at the start, I had been explicitly diagnosed with GCA or even PMR, I would probably have taken the predisolone, as the pain of the headaches was debilitating and my quality of life was awful. The main reason I didn't start them was because by the time of my GP naming PMR, I was already feeling a bit better. I still read the wise posts from experienced folk on this site and am now fairly convinced that pred can be managed and its less acceptable side effects mitigated, in return for the quality of life it offers. And for most, PMR is a self-limiting condition, so pred is not necessary long-term. It's an individual choice for each of us, of course.
Good morning, I cannot take steroids as it causes psychosis in me. My rheumy has had me on Plaquenil since 2007. At first twice a day and for a long time now only once a day and keeps my symptoms controllable. I am seeing her tomorrow and will ask about LDN. I have been doing a lot of reading about it and want to give it a try if she will. God bless.
I had PMR about 12 years ago, was on pred for about a year and weaned off with no problems. It returned just before Christmas, I put myself back on pred (from my date expired stash!) over the Christmas period while I researched alternatives. Started low dose naltrexone (LDN) in January and reduced the pred quite quickly as I'd only been on it for about 3 weeks. Had a week or so in January when I thought I might never get up off the sofa again apart from to crawl up to bed, also had return of muscle stiffness for a few weeks but symptoms showed steady improvement over this time. Muscle stiffness gone after about 5 weeks, fatigue and low appetite took a bit longer to resolve. After 6 months completely symptom free, currently maintaining LDN at 3 mg daily as it has no noticeable negative side effects, and on the positive side it's made my hair and nails thicker and stronger. What's not to like? 😂
hiya fromdownunder. I was suddenly struck with PMR about two months ago. Literally fine one day and immobilised the next. I am only taking 1000mg of naproxen a day, but it think rheumie will want me on pred in September. Pain is fine on naproxen but diabolical if I try to stop. I’d prefer not to take steroids but can we take big doses of nsaid long term?
It isn't advisable no, because they have severe adverse effects too when used longterm. In particular damage to the kidneys and increased risk of cardiovascular problems.
However - if Naproxen is working for your pain, despite the sudden onset there ought to be doubts you have the PMR we talk about. Naproxen does work well in some spondyloarthropathies and they can have a polymyalgic presentation. There have been a few people on the forum who were diagnosed with PMR and treated with steroids relatively successfully for some years but they coudn't reduce the dose and eventually it was found they had ankylosing spondylitis - which is managed with a different class of biologics.
Hi I have PMR and GCA since first vaccine. Also was fit and healthy other than epilepsy. glad to say I am pretty much fit again and back to my previous ballroom and Latin dancing. I never took steriods since the one injection I had caused psychosis. I take methotrexate and took actemra for a year. So far so good. Thx for all the interesting posts
Hi I have PMR and GCA since first vaccine. Also was fit and healthy other than epilepsy. glad to say I am pretty much fit again and back to my previous ballroom and Latin dancing. I never took steriods since the one injection I had caused psychosis. I take methotrexate and took actemra for a year. So far so good. Thx for all the interesting posts
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