How long does PMR lasts?

[innasway]

How long does PMR lasts? I have it for 19 years and I thought it went into remission. I was taking 1 mg of prednisone. Recently my SED rate went high again and because my old doctor retired I went to another one. He told me that PMR only lasts for 3 years and I should stop prednisone. I don't know what to think. Please help.

[piglette]

It is said that on average PMR lasts about two years, but that does not mean it cannot last a lot longer. Do you remember those bell graphs we used to learn about at school? I must admit 19 years does sound rather a long time, but perhaps you need a small amount of pred after that time just to support your adrenals. SED rate can rise for several reasons nothing to do with PMR of course. Mine will shoot up every now and then. Do you feel any different when it rises?

[innasway in reply to piglette]

Thank you for your answer. It's hard to tell if I feel any different because in general I never feel good anymore. Maybe because of my age, I am 77 years old or other health problems I have. I have a problem with insomnia and never feel good or rested. So. I don't know. Thank's again

[Ann1A in reply to innasway]

Hello, you have my sympathy, I sleep badly too and it has a bad impact.. . I know things are difficult with health service now, but perhaps, hopefully, now you've had time to digest the doctors opinion, and to consider your adrenals, you can get another appointment to address the ongoing problems.

[innasway in reply to Ann1A]

Thank you very much

[arvine in reply to innasway]

Have you also had testing and been diagnosed with any types of arthritis?

[innasway in reply to arvine]

Thank you for your answer. I have osteoarthritis but who doesn't at my age? But I think it shouldn't get my SED rate up to 64 after all those years on prednisone.

[piglette in reply to innasway]

when you get back to 1mg it would be interesting if you were able to go to 0.5mg or even 0.75mg. Are you able to do any form of exercise? I find I feel much better after a swim.

[innasway in reply to piglette]

I am able to walk but swimming is not possible. I wish. Thank you

[piglette in reply to innasway]

Why do you say that swimming is not possible? The law demands that swimmers with a disability have the same access to pools as non-disabled swimmers.

[Iamfedup]

My doctor told me up to five years. I was four

[innasway in reply to Iamfedup]

I am very happy for you, I probably have a chronic condition. Thank you for your answer

[SnazzyD]

Hello, can you say exactly what your symptoms are now? Have you ever had your adrenal function or cortisol checked?

[innasway in reply to SnazzyD]

Thank you for your answer. I never had those tests done, maybe I should. The symptoms are mostly fatigue, pain in my legs and eyes.

[jaydeeh]

My husband has had PMR for 7 years getting down to 1mg had first covid jab 2020 and was so bad back up to 20 now down to 8/9 mg. His doctor on diagnosis in 2017 told him sometimes people never recover.

[innasway in reply to jaydeeh]

Thank you for your answer. I thought I was in remission but just now my tests were really bad again. I don't think I will ever recover from it.

[Koalajane]

I have been diagnosed with it for nearly 8 years and down to 3.5mg. It goes when it is ready

[innasway in reply to Koalajane]

Thank you for your answer. I guess mine decided to stay for good.

[Koalajane in reply to innasway]

I notice you say your tests are bad. I don’t go by blood tests for inflammation markers as they can rise for lots of things other than PMR and GCA. I go by symptoms.

[innasway in reply to Koalajane]

I never feel good anymore but lately I have a lot of fatigue and pain in my eyes.

[Koalajane in reply to innasway]

I think you could do with having your adrenals checked to see how they are working

[RoomsonFire]

nearly 4 years here , but now it’s Bursitis ! 😅 Hips , Shoulders , Knees , Sweats and all !

[Charlie1boy]

I had PMR for just under 8 years. I have posted before what my GP said at time of diagnosis - “ PMR can last for two years, quite possibly longer, and it can be chronic”.

That explanation can take away a lot of the expectation that people are put under by GPs or Rheumatologists, who say PMR only lasts for two years. It doesn’t!!!!!

Good luck.

[innasway in reply to Charlie1boy]

Thank you very much! all the best to you

[PMRpro Ambassador]

How long is a piece of string? I have had PMR for about 20+ years now, on pred for 16 of them and if I reduce below 7mg the bicep tendinitis returns. And that is with being on Actemra as well. For about 95% of patients PMR does go into remission but a few of us have a long version. It may also be a polymyalgic presentation of something else - but if 1mg of pred is keeping it at bay, no doctor should be complaining.

However - a single increase in your ESR/sed rate without any symptoms should not be assumed to be due to PMR. ESR is a very non-specific marker and only tells you that there is inflammation somewhere, not where or what. A cold will send it up too.

But any doctor who believes that PMR has a defined duration is in cloud cuckoo land. Biology doesn't work like that. One paper years ago said that half of the patients studied got off pred in 23.7 months. I suspect that is the figure they picked on - without wondering about the other half - and announced that PMR lasts 2 years. The same paper said 40% of patients required pred for more than 4 years. It was a very small study.

pubmed.ncbi.nlm.nih.gov/403...

[innasway in reply to PMRpro]

Thank you very much for a great answer. I agree about that doctor. I am back on 4mg now and feel much better. Not going to this doctor again.

[PMRnewbie2017]

I'm at 7 years and still going strong although I think 2025 my be the year when it gives up. Gotta think positive!

[innasway in reply to PMRnewbie2017]

Thank you for your answer. Wish you all the best in the new year!

[Rotsky]

I was finally diagnosed with PMR last November. My GP said it would be three years or so. For me it has been bumpy. I started on 60mg then after tapering was back again on 60 mg as possible GVA…I cried then as 60 mg is horrible. I had a biopsy, possible negative. Then tapered down to 6mg but life and crises sent me back to 10mg.

I think the GP’s can only say what seems ok for some people. I very much doubt that 3 yrs will do it for me.

The only ray of hope is that we must look after ourselves, listen to our bodies and just keep on trying.

I have read that some Rheumys have said that a very low dose of steroids, like your 1 mg is sustainable for a long time.

Your distress is reflected many times in these forums. I accept that 3 years is possible over hopeful!

There are some very knowledgeable people on this forum and they will be able to help you more than I.

Just want to send my very best wishes to you and hope that those more knowledgeable than I can give better advice. xxx

[PMRpro Ambassador in reply to Rotsky]

If your diagnosis was PMR why on earth were you started on 60mg? That is a starting dose for severe GCA symptoms including visual and jaw symptoms. PMR should be started at up to about 25mg - any more is superfluous and takes away the diagnostic value of the response to moderate dose pred.

[Rotsky in reply to PMRpro]

Don’t know, that’s just what the GP started me on and I could move again. I had had some head pain previously, also visual problems, maybe he thought it might be GCA. I had had falls causing head injuries due to vision problems and general unsteadyness. (I now use a stick for safety.)

A short while later started to get pain down side of face and then jaw so back to 60 mg and a biopsy where the surgeon thought she saw inflammation but biopsy was negative, GP said the contradiction was not unusual.

[PMRpro Ambassador in reply to Rotsky]

Fair enough I suppose - but that would certainly deal with PMR symptoms!!!

[Rotsky in reply to PMRpro]

If it were not for the side effects I would love to feel like that again. Apart from releasing my inner demon I walked like a real person again. Now on my taper I am more of a shuffler. Just persevering. With thanks to you all for the good advice and comfort.

[PMRpro Ambassador in reply to Rotsky]

I do realise you found the 'roid rage difficult - and it is very common at such high doses which is why I was a bit concerned your GP started you so high, but you are risking ending up back at the state you were in to start with. After each reduction of dose you shouldn't feel worse than you did before it and your symptoms should be well controlled. Obviously you are not feeling good when you should be, and the unmanaged inflamamtion will mount up over time.

At what dose did the symptoms start to return?

[Rotsky in reply to PMRpro]

I got down to 6.5 and was ok, actually felt alive again, until I had to move and it was not enough so went back to 10. Went in stages to 8 and stayed there for 6 weeks, now trying 7.5. Hard to know if it’s PMR or my age, 80, or the flu and Covid prevalent here. Currently sweaty and wearing a mask while doing the last of the removals today. The move has been complicated, stuff in two different storage units. It will all be over by this afternoon and I can reassess the taper. Definitely stress plays a part. Thank you for your interest, you will see more clearly than I do whilst in the midst of everything.

[PMRpro Ambassador in reply to Rotsky]

Ah well - moving house is likely to cause DOMS - delayed onset muscle soreness and it may well take a while to settle down even with a bit more pred. But we always say - DON'T taper during a stressful period and moving is nothing if not stressful!!! I couldn't do a move on my own and I'm a lot younger than you! I'm considering taking personal items, handing the keys to a house clearance company and buying new for my granny flat when it is done. I'll need new bedroom stuff anyway, this is all built in, including the bed. There will only be the living area, a few chairs and a small dining table. I doubt my daughters want any of my cast-offs and a removal to the UK will cost a fortune and be complicated post-Brexit.

[Rotsky in reply to PMRpro]

Wise words most welcome! Will stick at 8 a bit longer, maybe even a 9 if needed. It’s amazing what one accumulates. I am in something like a granny flat now and seeing all the stuff, some dating back to 1960’s, had been a wake-up call. A lot of clothes like Laura Ashley headed for vintage shops, can’t get into them now anyway! Also the Council Tip is very close.

Your next move sounds exciting . A new chapter in life for you to enjoy with lovely new things. A new chapter for me also, so together me and my PMR and Rotter the Fat Black Cat will sally forth in hope!🌈

[PMRpro Ambassador in reply to Rotsky]

Won't be yet all being well - but we are preparing for the future so there will be no pressure. It will be with one of my daughters as an annexe to her house - but need it built first, I managed a couple of months with them in the summer but need my own space!!

[Rotsky in reply to PMRpro]

Ah, the delights of living with one’s grown up daughters…an experience not to be missed…at least a 10mg!

[PMRpro Ambassador in reply to Rotsky]

Works t'other way too - I had the pleasure of living with my mother in law ... Hmmm.

[innasway in reply to Rotsky]

Thank you very much for your answer, best wishes to you!

[DorsetLady PMRGCAuk volunteer]

Short answer as long as it wants as it’s a self limiting disease.

As PMRpro has said she has a long variety -like you.

[Fiesty]

i’ve had it for eight years. Got off of prednisone one time for three months and had to end up going back on it. I’m now down to 3 mg of prednisone again.