I have been treated with steroids for 11 yrs for PMR 20 mgs to start. since then I have gone up and down from 7 mgs to 2 . 5 mgs several time. Always failing to get off them because of the return of severe fatigue, pain, stiffness , weakness in muscles , so I end up going up again , but ESR & CRP remain normal. Things were that bad last year my GP sent me for a short synatchen test, the endocrinologist said the results were normal but perhaps not in a stressful situation ?? I am now reducing at 0.5 per 8 weeks. Was doing ok ish but my last reduction 3 weeks ago to 3.5 mgs has seen a return of how the symptoms have been before. I am totally lost with the suggestion that this may now be fibromyalgia , as my GP says., but then I know I will feel brilliant again in 4 days if I go back to 5 mgs. Today I am in bed as my fatigue and weakness has overridden my normal determination to get out and walk. Is there any answer to this perpetual up and down. Would be nice to hear from someone experiencing the same as me .
PS my mum had Sjogren’s and lymphoma , and elder sister 68 has just been diagnosed with PMR GCA and vasculitis of her Aorta.
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Avadip12
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I have had PMR symptoms for some 18 years now, the first 5 without pred which was interesting. I have been on pred for 13 and a half years and only once got below 5mg before having a massive flare - one of maybe 4 over the years.
That PMR only lasts 2 years is an absolute myth and there are several on the forum with similar stories. Not fibro - Long PMR because pred manages it nicely usually. It exists as one of perhaps 4 or 5 different versions of PMR. It is not a simple, short lived condition whatever some doctors thing - it is heterogenous and for some people can be very complex. We need to sponsor prof Sarah Mackie from Leeds, a foremost PMR researcher, to take her PMR lecture on tour to dispel what she calls "the 2 year myth of PMR"
The answer is to take the dose you need and hope that at some point the Ps that B realise that for some of us Actemra is needed - I have been on it for 7 months now and it got me down to 7mg pred from nearly 20mg for the PMR. Unfortunately I have had to go back up because my Covid booster in November has kicked my atrial fibrillation into life and the only way I can control that at present is with more pred. It is all a balancing act.
thanks for replying, nice to communicate with someone on long term treatment.I don’t think I would be considered for Actemra as my bloods always remain neg , even at times when feeling my worst. ( at diagnosis ESR 97 CRP 90) normal since. So sorry you needed to step up again . Hope you heart settles soon. I think I will go back to 5 mgs . As I need a better quality of life , this drop has reduced my walking and swimming and both my hip Bursars are sore. And I have gained 7 lbs . my Dexta scan showed only slight osteopenia in my lft hip and spine, I am 66 . I have improved proved my calcium intake . But not going to take the adrondic acid. I haven’t got diabetes and my skin is good.
My markers are also never raised out of the normal range - the ESR was raised for me but no-one noticed! CRP was never raised due to PMR. I have never taken AA - my dexascans are still fine.
I'm not in the UK so my rheumy decided to see if we could get the pred lower - being stuck IRO 20mg after all these years was getting silly. It worked for PMR ...
For the bones, have a look at my story (link below) as it will give you some non-medication ideas on how to maintain or even improve your bone density. As for "Long PMR" I think I now qualify, having started pred in 2015 after at least a year undiagnosed. In retrospect I may have had it in milder form for years before that, but blamed all the symptoms on my pre-existing osteoarthritis. As OA does not trouble me the same way now that PMR is well-controlled and yet my dose is down to 2 mg, I do rather wonder about all those years when certain actions were somewhat painful for me. But I was virtually crippled by the time I was diagnosed. nothing vague about it! I'm grateful for pred, and I have treated it with respect, but have also always been very careful to taper using slow methods. I never increased dosage for any reason other than increased pain and have put up with the deathly fatigue stage. Fortunately I do seem to have good cortisol production now at a very low dose of pred, but it was not a seamless journey to get here. Perhaps I've been fortunate that I retired some months before diagnosis so have never had to worry about dealing with work obligations.
I’ve had PMR for 8-1/2 yrs. 8 yrs on prednisone; the last 4 on 5mgs. Typically have 1 or occasionally 2 flares per year. In 2022 I had 4 flares and I’m currently taking 6 mgs to hopefully maintain. Rheumy wants me to try Actemra infusions- don’t know what to do.
thanks for replying , it helps me see that I am not alone and moreover I am not faking my flare ups. As that is how I feel sometimes when my Rheumy asks me , how is it going , and I tell her I have flared again and had to increase. I see her disappointment in me. Never heard of anybody on Actemra in the UK .good luck to you.
It's not approved for PMR in the UK - nor anywhere else really but the USA uses it for some patients. One company does want to do a study with something aimed at long term PMR patients like us. Be interesting to see how they get on. My rheumy thinks that the price of Actemra will fall drastically in the next couple of years which will almost certainly change things. Humira has fallen from £12K per year to about £800 per year - I'd consider paying the cost myself if it were that sort of level.
I am on pred 6 and a half years. Definitely had PMR for at least 9 months to a year before diagnosis. I am on 5.5mg and cant seem to do any lower (i was lower at one stage having been taken off pred completely after about 16 months or less by the rheumy). Disaster to say the least. She wouldnt listen to me and told me to "get moving". Ended up going back on pred 1 mg at a time to get to this. I do have fibro but i had that first. Wish i would give you an answer but there doesnt seem to be one. I know how disappointing and frustrating it all is. Best wishes.
When I hear of a rheumy telling a PMR patient to "get moving" it is just as well they aren't within my reach! I hope they get it one day. Badly. And meet a rheumy like them.
thanks for replying. Yes I also said that to my Rheumy ” there doesn’t seem to be an answer” and she agreed. They really don’t know what to do with our type PMR except keep trying to get us to reduce , and hoping we strike lucky. Unfortunately for the likes of you ,me and the others in this continues circle, we keep losing our quality of life .
hi I’m still waiting for my appointment to arrive to see a rheumatologist,I’m really hoping I get a understanding one as I’m really needing some support as PMR is really depressing me. I just can’t get my head around it. I was doing fine on 50 mg all the way down to 20 then I was drop straight to 10 mg by the go and I’ve got worse so back on 20 mg but have never been any good since the drop. Ive read you shouldn’t be drops so fast I only started in late august
What on earth possessed the GP to do something SOOOO stupid! Mind you - if you were diagnosed with PMR, they obviously had no idea what they were doing since 50mg is for GCA with visual symptoms. NOT PMR!
Given your symptoms - it was fair enough really. And the biopsy being negative only means they didn't find what they were looking for, not that you didn't have GCA,
I had inflammatory markers over110 so they suspected GCA and that’s why they put me on 50 mg then three weeks after taking the pred they did a biopsy but it came back negative but my GP thinks it’s that due to being on pred for the three weeks prior op. I don’t no much about it only what I read
I refuse to lose the quality of life if I can prevent it. It's been almost 8 years for me and I've never got below 10 mg. Reductions for me are .5 at a time and have been needed since 17 mg. Currently, I'm creeping down from 12.5 to 12. I had a major flare early last year after a mild case of covid that pumped me back to a level requiring a slow creep from 15 mg. I use the DSNS method and often have to repeat steps.
Like PMRpro my bones have not deteriorated, likely thanks to calcium, vitamin D and K2 supplements. No signs of diabetes. Recently lost 25 pounds by reducing calories and walking far more than I've done in the past few years. The more weight I lose the more I can walk.
My husband and I traveled extensively by road in Canada this past summer to visit family and I loved every minute of it. We recently returned to our home in Panama for 6 months and so far life is as good as it can be.
I'll be 74 in March and hope to enjoy my remaining time as best as possible. If that means higher doses of prednisone so be it. I'd love to get to at least 10 mg and will do my best to get there.
I am 63 and have had PMR for 10.5 years, never getting below 8.5 mgs pred. Currently on 18mgs after a huge flare caused by serious insomnia and the treatment for it. My PMR doesn’t seem to have abated at all in all these years.
I wish I could try Actemra as nothing else has made any difference.
You are not alone and I find it comforting that I am not alone either . We just have to keep going and accept what our bodies are telling us.
thanks for replying. Interesting that you had insomnia. I also get this , and can stay awake for 2 days running . Not sure why this happens . I also have zopiclone a very small dose only 1/2 of a 3.75 tab. That I only take on my 2 nd day awake . Again , as my GP doesn’t want me to have it !! Another blow to my quality of life
I too recently have experienced sleepless nights. I am thinking it maybe from my monthly infusion of Actemra. I never had a problem when just on prednisone. It’s tuff because we all need sleep. Hope things get better for you!
I could have written your post myself! 11 years, up and down, been for ACTH test, not too bad but maybe not under stress. Also told must now be Fibro because of deathly fatigue. On 5 mg will now drop extremely slowly, not much else we can do really. Some days really awful, mainly the fatigue. Wish I knew the answers for us! We plod on together, we’ll get there!
thank you for relying. Yes we have the same story. This time I have reduced 0.5 mgs per 8 weeks. But still arrived at the same point at 3.5mgs feeling dreadful. My Rheumy agreed she hasn’t got the answer but for me to do it all over again.
I have had PMR for approx 13 years. I managed to get down to 3mgs and decided to stay on that dose. in October I got COVID thankfully not too poorly but PMR came back to bite me!! I increased the dose for a few days and stayed on 5 mgs. Over Christmas I flared again the pain was awful and I increased to 10mgs. It seems never ending but I’m trying to stay positive and hopefully get back to 3mgs again slowly. It’s been a long hard journey so many ups and downs but we keep hoping. Mx
yes Marcas, my last 15 yrs have been up and down, and although it’s so frustrating for us PMR sufferer’s it’s also confusing for our families and friends. One month your out about and up for fun, then two months along the line it’s the reverse. Then as you say we just have to carry on
I really sympathise! I've just passed the 3-year mark on prednisolone (I'm 60), once starting as high as 20mg and once at 30mg. The "severe fatigue, pain, stiffness, weakness in muscles" comes back gradually every time I taper. There is no sign of any real healing going on. It's just a case of more prednisolone = better quality of life and vice versa. Steroid-sparing drugs are clearly the next option but, bizarrely, doctors don't want to try something different if your experience of PMR is out of the ordinary! I'd happily try some cheap, old immunomodulators, such as methotrexate, in the hope of striking lucky, never mind the newer MABs, like Tocilizumab. If I "felt brilliant" on just 5mg, I'd stick! I already take calcium and vitamin D, do weight-bearing exercise, and maintain a healthy diet & weight, all to minimise the risk of prednisolone side effects.
This is a chronic disorder that MAY burn out and go into remission - but that can be in anything from 2 to 10 years or more. There is no cure, no "healing" as such, just an autoimmune condition underlying the inflammation and symptoms.
Indeed. My symptoms have been lifelong, waxing & waning, but noticeably worsening on a timescale of every 5 years. I have no 'normal' to go back to. All I want (now it has become so debilitating) is a treatment that can give me a better quality of life for a few years. I'd like to enjoy a bit of the retirement I worked so damned hard to keep saving for.
I have been on all the steroid sparing medications ,methotrexate, lefluonamide , without any positive outcomes , only unwanted side effects. Here in the uk we are not offered MABs . So yes, my conclusion is to finally stay on 5 mgs and maintain a much better quality of life.
Here they seem accepting of the fact that many people need long term pred, quality of life is written larger here than the UK I think. I am unusual in requiring quite such a high dose and hence the decision to try Actemra because he can, And even with Actemra he's only aiming for 5mg.
I've had PMR symptoms with high ESR and CRP since I was 46. Only actually put on prednisolone in 2016 and started on 30mg pred which improved my symptoms by 75% in 24 hours. Gradually reduced but now been on 5mg long term as to go below seems to trigger a flare up.
So that's 6 years on pred but actually 15 years with PMR! My blood markers are stable but still raised but this could also be down to other inflammatory conditions. My Rheumatologist is a good one and has kept me on 5mg as this seems to be the magic number for me.
I had to give up my business (Exercise Teacher) and the most important thing for me has been to keep as much mobility as I can. I have struggled with this but that's also due to other joint problems too. Apart from very short walks and keeping my joints mobile I have been unable to exercise in any meaningful way. I haven't been able to ride my electric bike for about 2 years as my back problems have increased and been referred to a Neurosurgeon following an MRI.
I am seeing a Neurosurgeon privately on 14/1 as the NHS has been unable to give me an appointment and the last estimate was 6 to 12 months. I have been waiting 6 months already.
It's very frustrating having long term health problems and I can only empathise with you. I consider myself lucky that I do have a good Rheumatologist and GP which makes a huge difference.
Morning.. it is a nightmare isn't it.. I was recently at rheumatologist after 2 years and they also thought I might have fibromyalgia and tolD me.to start on duloxotine.. made me very sick and I don't for one minute think I have anything other than PMR. As other comments do what you need to feel well and able to enjoy yr life!
Have you tried taking Methotrexate as a companion drug to help taper off of prednisone? I have PMR and taking MTX has helped me reduce prednisone to 5.5 mg daily. I’m tapering down .5 mg every 3 weeks.
Hello from another long timer. 7 years now and back to 20 mg. I have only been able to get down to 5 mg . My flares/relapses are accompanied by very high ESR and CRP. I have GCA symptoms but ultrasound has been negative twice. I am about to start on Leflunomide rather nervously. It’s depressing because at first 20 mg made me feel like I could rule the world! Now I am still dragging myself around. I am also hoping they open up Actemra in the UK for us too. I hope it settles down for you. I have read on the forum that some people improve after 11 years. I will be happy if I can get to 5 mg and feel reasonably well. But then there is the degenerative disc disease and osteoarthritis coming on nicely😫
Just to say I’m pretty much the same as you, I’ve been on pred tor 8 years. I’m 66 now and have never got below 10mg, currently on 12 mg. I did get shingles in the eye in March 2021 which has left me with post herpetic neuralgia around my eye forehead and one side of my head. I went up to 25mg then for a few days before dropping back over several weeks. I’ve tried toughening it out but PMR always wins. My CRP has been as high as 64 and as low as 6 or 7 (memory fatigue😂). You need to take the dose that gives you relief otherwise you’re taking a drug with side effects but getting no benefit. It’s been said many times on this forum that it’s not a race to zero.
Regarding the doc suggesting it might now be fibromyalgia is not an educated statement as steroids do nothing for fibromyalgia. I was diagnosed with fibromyalgia 10yrs years ago. My rheumatologist said to me a while ago he now thinks it’s fibromyalgia but couldn’t explain why my markers were abnormal and that pred works.
I hate being on pred but it means I have some quality of life which is better than if I wasn’t. Good luck with your pred journey.
Avadip it's been enlightening to read your post and the comments. I actually have rheumatoid arthritis, but I recognise your symptoms of coming off steroids from my own experience (11 years on 5mg prednisolone which of course on it's own doesn't help but for 10 of those I have had a biologic (Cetrolizamab Pegol aka Cimzia injections).
I too am in my 60s and having been told to stop prednisolone over the course of the year (because I had a fracture) have found I have gone from being able to do anything I want (including walking for 2 hours, dancing etc to hardly being able to walk round the house, wanting to rest most of the day, and constant pain (and it doesn't feel like rheumatoid pain, it's different). I'm also putting on weight and growing hair where I don't want it.
I'm wondering whether to ask to go back on Prednisolone purely for quality of life... though I don't want to break more bones either...
Hope you get sorted.... definitely we all need to support research into these things. I only got to having Cimzia due to a drug company sponsoring me initially before the NHS took over. Pre Cimzia I was in the same place I am now except with severe rheumoid pain.
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Still on 6mg Pred 
Now I know why I am feeling so Ill.
Low Potassium
feeling weird after every meal
