Hi folks sitting here in sun and wondering as I turn 70 soon will I ever get better from pmr,I remember gp saying 18 month and that has turned into 5years have had a couple of flares and have got down to 3 but that's as good as it gets. X
What is a long time with pmr.: Hi folks sitting... - PMRGCAuk
What is a long time with pmr.
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Harrywogan
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I was told 18 months and 5 years later only down to 7mg, although I did get to 4mg and flared so won’t up to 9mg. Going really slow now
Thanks so much good to know how other people are doing xx
PMRproAmbassador
Most people DO get better. The 2 year myth (as Prof Mackie describes it) seems a very English-speaking concept, over here on Germanic countries they seem to accept it lasts a lot longer than that for many patients though they only need the sort of low dose you are on.
There are a few of us on the forum who have had it well over 10 years - I have had it for 18 years now! There is absolutely no evidence it is anything else - but I, like a couple of others, have never been able to get to a low dose.
Thanks ambassador, that's a long time take care and keep well. X
Me also, down to 1mg! Seems silly not to break with that, but don’t want to rock the boat!
Good plan - consider reducing when you’re ready…. If you’re not ready then 1mg is no big deal.
That’s wonderful you are down to 1 ! I tried to go down to 1 ( and then my doctor said to stop using prednisolone, which I did …. For a while ) but could not cope e with the pain in my joints after I went down to 0) .As I have said many times on this forum I hate steroids ( my mother was on them for years and years and they affect your bones , your skin , your weight …just to name a few ) but sometimes you need to find what your body is capable of doing . And keep trying to reduce if you can .
For me summer is definitely better!
Thank you for sharing!
I am beginning to think the same thing applies to GCA. I've had it for nearly ten years and seem stuck after three relapses.
You have been unlucky - it really is unusual. But then - to need as much pred as I do is also very unusual. We are rare birds!!
Why how much are you on ?
Don’t think it’s quite so common as it is with PMR -so bad luck!
I was told by my GP at diagnosis that it could be two years, could be quite a bit more, and could be chronic. That was seven and a half years ago, but I have been very low ( well under five mg) for the past three years. Got to zero three times, but currently at one mg.To say one needs patience is an understatement.
Good luck
Paddy
Lucky you at 1mg did you have many flare?
None, but I was an early disciple of PMRPro, and DorsetLady! Went very slowly and carefully down!👍Paddy
Good lad 😇
Iam 1/2mg every 8 weeks,thought that was slow x
Thanks Charlie boy,it's when you have a flare and have to go back up its depressing. Take care x
Yes, but you just have to get on with it! The pmr is in charge and does what it wants, which , invariably is not what we want.Good luck.
Paddy
At 60 was told 2 years......now 70....down to 6mg and struggling big time with adrenals.....I'll get there, but as usual....slowly!....
Exactly, people say to me ...why when on a low dose of your meds after all this time you are still struggling , now with another problem...adrenals.....I get fed up explaining, especially when asked, how low have you got to now??....sometimes don't mind, but not on a bad day....
Rheumatologist no problem......it's friends and family!....
So you could get Prednisilone without prescription?...before diagnosis......or given for pain?
Ok, hope there's no reoccurance anymore......
Hope it stays that way......
I've had it for nearly seven years. I'm down to 2mg. At the beginning of lockdown 3 years ago I was on 3mg. I decided then to continue reducing extremely slowly as I didn't want a flare and have to increase dosage and wreck my immune system. I'm now planning to continue very slow reduction with no target. I think when you are at 5mg your immune system starts to kick back into gear. There is then no reason to hurry reductions and very, very good reasons to take it very slowly. You just can't rush this illness. It's there and it will disappear when it wants to. If you think of steroids as your friend that stops the awful pain I think that helps. What you can do is eat well, exercise carefully and accept that the illness is in control. I'm afraid there are no miracle cures.
How do you know your immune system kicks in at 5 mg.? Is that from personal experience?
Not necessarily 5mg -see this post explains adrenals and steroids -healthunlocked.com/pmrgcauk...
I think you are right. I have been thinking. I started pred. 2 times with one year in between. Both times on 15 mg, that worked wonders in a few days and after few weeks I felt as before (with some side effects). Then after 6-8 weeks both times I flaired or it felt like the pred. did not do the job. Of course I have overdone everything and should have paced myself, but could it also be that my own cortisone production falls and that is really the equivalent of going down in dose - AND the I flair? I guess that ones you start messing with all the biochemistry and feedback systems things get complicated..... But PMR could definitely have something to do "regulating" inflammation. I wish there where more research
At my last consultation was told maybe I'll have it for life. Maybe. I'm at 5 years and counting. At present back to tapering slowly again (also with the help of weekly Tocilizumab injections) after having had yet another big flare after having got down to zero prednisone. I'm in France and the monitoring is very thorough especially as I had both PMR and GCA. The biggest problem is acceptance!- I mean, who wants to be drug dependant for life? However, our ambassador PMRpro and other veterans of this forum are guiding lights in this regard: they carry on undaunted, with a big dose of humour. It's good to know one is not alone in this struggle.
Hi, I feel like we’re very in step - I too am just coming up to 70, and have had pmr for about 6 years. I was told at the start by my GP (in UK) I’d need to be on pred about a year…. Thank goodness for this forum as it helped me make more realistic assessments as I went on the rollercoaster of reducing and relapsing. When I moved to Norway it was with some relief I found that medics here consider it to be a long-term if not permanent condition - at least I’m free from the constant and often unrealistic expectation that I should be constantly reducing (as if we’re not self-motivated enough!).
Of course my feelings are mixed because I so badly want to be fit and well and drug-free again, and I’m still hopeful. In the meantime I’ve at last managed to get down to approximately 1.87mg daily (lots of fiddly pill splitting required, 2.5mg pill is lowest dose available here). Maybe that will have to be good enough and I’m grateful that I’m at a low enough dose not to worry too much about the unwanted effects of pred. I wish you luck in the continuing balancing act.
"When I moved to Norway it was with some relief I found that medics here consider it to be a long-term if not permanent condition"
That confirms my suspicions - and really you would expect them to know as it is more common there than anywhere else!! I wonder why it is the English-speaking cohort who are so convinced that it doesn't last long and if it does it isn't PMR!
Yes, it’s bad enough to have to wrestle with the illness and all the life changes it brings, without it also seeming like it’s felt you’re not trying hard enough! Personally I find it easier to deal with situations that can be confronted honestly but I know we’re all different in how we tackle problems and perhaps it might be too discouraging for some to be told it can be a long term thing. I think though that it only delays the day, and the sooner we face it the sooner we can start to make the physical and mental adjustments that are needed (and can make life a little easier). I’ve had to learn such a lot about patience and pacing, and making the most of the in-between good moments.
When the forums first got going we used to say that it is all very well telling patients it is 1 or 2 years and then it will be gone or that once they are on pred they will be back to normal life - neither of which are true. But when they don't feel "back to normal" or after 3 years they are still on a low dose of pred that they can't get off without symptoms returning and they are getting the blame for not trying then they end up at the charity or the forums and discover what they are experiencing is absolutely normal and loads of others are in the same boat. And we have to calm them down and explain.
If nothing else, it doesn't do the doctor/patient relationship much good - can you trust them to tell you the truth after that? Younger doctors learn the same beliefs - and then start experimenting with all sorts of other rheumatology drugs that rarely work in PMR instead of learning to make better use of the drug that does work reliably.
Thank God for this forumDiagnosed with GCA -was told by ophthalmologist 2 years on Pred minimum, probably nearer 4, maybe forever. Much more sensible approach -and he was spot on -just over 4 years.
They never bothered to check for GCA even though I had severe jaw pain and blurred and my GP and rheumatologist referred my to hospital. The CRP was not raised so "No signs of inflammatory disease". So sent home to wait and see. Now I am on prednisolone again for PMR and all the jaw pain is gone - I just reallised. It used to come after cold meals or much chewing. Really bad, but went away after 20ish minutes. It has not been there since back on prednisolon - I give up. The treatment is the same.
Treatment is same, but for GCA initial doses are much greater...but if you don't have jaw pain good..but do keep you eye on it, especially as you reduce Pred.
Thanks you so much,nightmare lol xx
I was diagnosed with PMR six years ago just after my husband died. I am now down to 1mg and live in hope it will end in August when my last blood test is due. Fingers crossed it won't be too much longer for all of us.
I was told two years but my GP wanted to lower my dose after 6 months because of the side effects. Now I am back up to 15mg and still in pain. Waiting to see a rheumy. I am sure this was brought on by the shock of losing my partner. My mum got PMR when she lost my dad and she did have it for two years. I think she was lucky but she wasn't lucky that pred messed up her stomach for life. What a dreadful disease this is. I tell myself I could have something much worse, so try to look on the bright side.
You are lucky you have had regular rheumy appointments. I have had this awful illness for nearly two and a half years now and only seen a rheumatologist once I all that time and to be honest, it was a waste of time. All he asked me was how much pred I was taking and if my fingers were stiff in a morning. I came away more baffled than ever.
I am 3 years in and still on 13.75mg pred. I have both, arm & shoulder band and hip & thighs. My Consultant here in Spain would like me to get to 5mg eventually but said as I had both areas and was relatively young when it started (50 Diagnosed at 54) I could easily have it for life. I think of it that way and if it ever disappears it will be a bonus.
That is interesting too - I've gained the impression over the years that we who got it young-ish often have a more difficult to manage version. Made worse by delayed diagnosis due to blinkers about the diagnosis and age.
I agree, approaching 10 years, managed to get down to 3mg after several flares and ups and downs , ( I was admittedly , stubbornly dragging myself around with difficulty )until I contacted Covid pre vaccine.
Haven’t been able to reduce since with stress from caring and reactions to the Moderna etc , yo-yoing .
I feel it’s the adrenals causing the problems , they caused an adrenal crisis with Covid, horrible experience.
I refuse steroid sparers , will try and stick at 7.5 mg for a while and hope they don’t notice the 0.5 mg very slow reduction when ready.
Easy to say until the pain , exhaustion and crazy sweating starts.
You get the feeling a good 6 months rest without stress , phones , no fighting the system and just maybe we’d stand a chance.
Big hugs to all xx
I try and think the same, that I will try and live with PMR as best I can and if it goes one day that'll be great. The secret of happiness I'm told is to lower your expectations 
Dad2Cue, I take it you would need your adrenals definitely working before they stop the pred and try something else? I fee stuck in no man's land getting nowhere.
I started May 2020 and stopped taking Pred Nov 2021. So for me 18/19 months. Everyone is different and recovery for everyone is different.
20 plus years PMR, 12 plus years GCA. I was badly misdiagnosed for several years so am a rare case. Was told will have rest of life. Am 67 now. on 5mg prednisone and Actemra.
I was on pred for GCA for 5.5 years. Have been off it for now 6 months. Here's hoping it never returns. My adrenals are waking up, not where they should be but getting better. What a journey!!
I am 73, and have had PMR for about 4 years. Currently on 2.75mg pred, but not totally symptom free.My doctor has been a rheumatologist for over 3O years, and told me the longest he has had a patient on pred for PMR was 7 years. I sad yeah, but how many of them were still suffering? He had no answer.
I was dx 3 years ago at age 48. I went from 20mg to 9 mg the first year, 9mg to 7mg to 3mg to 9mg the second year (flared at 7 by dr pushing taper and ended up back at 9. flared at 3 after covid jab and back up to 9). Year 3 got from 9 down to 2. I have toyed with 1.5mg however for the very first time since my initial few blood drawns, my ESR has gone back above normal so not sure what my GP will recommend at the next appointment! He has encouraged me to keep trying to go lower but also recognizes that some patients need to stay on 2mg for life. (Unlike the rheumy I left because she refused to acknowledge the dx of PMR and relentlessly pushed to zero prednisone based soley on bloodwork and not symptoms.) To to summarize, 51 years old, 3 years since dx, and at 2mg.
I had about a one year break from it. Got Covid 5 weeks ago and it kicked back in. Rheumatologist thinks it may just be a flare and will go away quickly. I'm hoping she's right.
I had it for 2.5 yrs and then took myself off pred when down to 2 mgs cold turkey (I thought that it was a insidious drug) I had a lot of withdrawal pain and my left knee swelled up causing pain also but I was determined to get off it once and for all. I am 71 and I’ve been off since February. The first month was awful, it was like I had PMR all over again and I was very miserable. Then I felt the breakthrough the pain when away and my adrenal glands woke up and I only have slight stiffness when waking up and as soon as I hit the floor it goes away and I’m good for the rest of the day. I still keep to the no carb diet as I fell so much better on that than anything else. I don’t suggest doing what I did as it takes a lot of determination and your threshold for pain has to be quite high to deal with the 30 days of pain (I nearly reached for my pred a few times but I didn’t) and got thru it.
Hi Harry,
I’ve been medicating for 30 months now, I saw from an earlier blog that 4 years and 8 months is the average.
Been down to 6.0 but over a month some of the symptoms started to reappear. Stepped up to 7.0 for a month and all looking good came down to 6.5. Been on this for 3 weeks now and all is good.
Adrenal gland activity is the key and being patient if things start going backwards.
One thing I learned from this site is that 0.5mg reductions are the way to go and not being impatient.
My Gp has been helpful but who can talk/discuss with them now?
He certainly wasn’t aware of any timescale of the malady, this site is best for that.
My activity level is slightly reduced but that may be the ageing process, I am 74.
Good luck, hope things go well for you.
Sometimes you don't want to jump the gun, and are not sure lol xx
I’m heading into year 9….
Was diagnosed 7 years ago this week. Have got down to 3mg but then always have a flare.
It's depressing but ....at least the prednisolone keeps me pain free - if I keep in touch with my body and the signs of a flare.
I feel the same as you. It seems never ending. Just coning up to my 6th complete year with it. Got down to 3 very briefly but now up to 6 having yet another flare up. It's very depressing.Good luck though.
I head 6 years is max but I'm beginning to doubt that.
5.9 years was average, not max, in an American study by Matteson.
Hello Harry, hang on in there! I had PMR for 6 years and like you wondered if I would ever get through it. But sheer b..mindedness got me there, I was reducing by a quarter tab every week in the end but finally took my last Pred 6 years ago and have been in remission and really well ever since. Now enjoying life in retirement in Perth Australia. Cheers Maureen
Thanks Mlangston,when I read your journey with Pmr,gives me hope,enjoy your retir ement in the 🌞 and keep pain free. HARRY.
I'm 72 and I've had PMR for 12 years and I'm on 7mg ped. My consultant said on my last visit a couple of weeks ago, If you still have PMR after 3-4 years then there's no expectation that it will disappear. Your adrenal glads will not be producing the cortisol and at this point there is no point in trying an alternative to pred because they just don't work after all this time.So for me i'm stuck with pred but I will try to reduce/ taper over the next year
My rheumatologist (the amazing Dr Mackie) says 'never give up hope'. But I do often get down after 10 years. Currently trying methotrexate to see if it'll help me to be able to reduce the steroids. At one point around the 5 year mark I came off steroids, because the docs told me the PMR 'must have gone away' but it hadn't. My adrenals did start working after a few months though so it's not a given that they'll never work again. If I ever get below 10 Pred I will be happy with that, so 7 sounds amazing to me, it's a relatively low dose
I hate this PMR but after all these years unfortunately its part or all of my life. I do have days when I cant do anything. Then when I do get the energy Im off like a Duracell bunny.But do I pay for it the following day!!! He ho!
I am also 12 years and counting - can never get below 7 mg without suffering reoccurring pain
Hi Harry this is second dose of pmr for me. I was on pred for 8 years first time roundI have been taking it forabout4yeats this time around.
I've had to click 'like' but what I really mean is I'm sorry to hear that, poor you. Glad you're on this forum to share experiences and help others
It’s both reassuring and depressing to hear about the duration. I am approaching seven years and have just had to go back to 12.5 because my ESR and CRP rocketed up when I tapered 1 mg over two months from 10 to 9. Like a lot of us I have been down to 3 twice. I have just resigned myself to keep on trying to reduce because of diabetes. Plus osteoarthritis is spreading quickly and a low mood seems to come over me more often. But what else can you do?
10 years for me so far, and no sign of it going away yet. Currently on 22 Pred. I got it when I was 51 but it wasn't diagnosed for nearly a year. It has been subsequently confirmed as PMR several times via PET scans. This will be an interesting update as I have posed the same question as you over the years and often wonder how other long-timers are doing. All the best and keep smiling
I was diagnosed in September of 2017. I started at 20 mg of prednisone and felt great. Now I’m down to 2 mg but pretty much everything hurts when I stand up from a sitting position and when I bend to pick up something from the floor. I hurt a lot but have degenerative disc disease and a herniated disc now. I am 75 now.
I only managed once to get off Prednisone and Tocilizumab completely for a brief three months last year. I was feeling fine, symptom free but having my monthly blood checks- I thought I was done and dusted! Until I got an urgent call from my rheumy: "Start again weekly Tocilizumab and come in for a scan". The scan results (January 2022) showed me lit up like a Christmas tree: all inflammation back big time. So restarted straight back on 40mg Pred and carried on with weekly Tocilizumab. Where I'm at now: tapered down to 9mg Pred and on weekly Tocilizumab. Weird thing was, latest scan (April 2022) was completely clear. Even my rheumy was a bit amazed with the total success of the medication. Like you, the original plan was I'd get off Prednisone and then gradually taper of Tocilizumab eventually. Not so sure now. Especially as I had both PMR and GCA (which is the one the rheumy worries about). On the one hand, I'm pleased that the meds work: on the other hand, feeling I might be in for a long haul.
What sort of scan was it? Some are very affected by being on any dose of pred.
TEP-SCAN au 18-FDG in French. A PET-scan I imagine?
Probably - the pred at 9mg will interfere with it considerably.
Had no idea! That will be my next topic of discussion at next consultation in October then. Fortunately my rheumy is really friendly and doesn't mind answering questions and explaining things. I'm curious what her opinion might be or whether indeed they take prednisone interference into account.
that's quite a history. As I understand it one can stop and start with Tocilizumab ad infinitum. Don't like the idea of being on it forever though. Trying to stay optimistic and grateful that there IS even such an effective drug.
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