Does PMR ever go away?

[Bambi1234567]

Good morning! I was diagnosed two years ago. Really just looking for some hope. Does this ever go away? How many people would you estimate are able to get off of Prednisone? I love all of your knowledge and input. Thank you for everything you all share.

[PMRpro Ambassador]

It has been suggested in the past that about 95% of patients treated with pred get off it at some point - but very rarely in the quoted 2 years! A few of us have a resistent relapsing version that seems to go on and on but we are unusual. Some people get off pred as the active inflammation burns out but it revives later and they have second episodes even years later.

[Bambi1234567 in reply to PMRpro]

Thank you!

[DorsetLady PMRGCAuk volunteer]

Yes it does “go away”.

But how long that takes and what percentage is like asking the age old question -how long is a piece of string. No definitive reply-sorry…

2years & under for some, longer for others -average around 4 years -doubt anyone has accurate figures.

[Bambi1234567 in reply to DorsetLady]

Thank you for the reply !

[Charlie1boy]

The average length of pmr, as quoted by the Mayo Institute in the USA was 5.9 years!

One of the guys who came to our Support Group meetings got over it in a year, but I think that is unusual. I got off pred after seven and a half years, which is well over the average.

PMR comes when it decides to, and goes when it decides too!

Not a lot of help for you I guess, but that’s how it is.

Good luck.

[Bambi1234567 in reply to Charlie1boy]

I tried to get into Mayo when first sick! no luck , thanks for replying!

[yorkieme]

My personal experience of this terrible illness lasted four years,my journey has been pretty standard in many ways regarding dosage at different times,flare ups thanks to being advised to reduce too quickly and of course other illnesses either connected to steroid usage long term or simply being immune deficient.

My last steroid intake was 30th October 2022 but during my rheumy appointment at that time to close down treatment by them and switch me to G.P. care it was said that the chance of me getting PMR again was 50/50.

Without living each day terrified that it might return it's clear from those who kindly advise on here that percentages mean nothing. I think with our immune system being what it is we simply cannot know.

So ! The answer is yes, we/you can get off Pred' but there are no fixed answers as to how long it will take or if it will return. All you can do is to make sure your life is geared to making it as easy as possible and avoid doing what I did during the early months ........... fight and struggle at every turn.

I have to laugh at some of the things that I suggest regarding making things as easy as possible because that's something I didn't do for a while but then I got the message.😂

Be as patient as you can be,look after yourself and it will happen.

[Bambi1234567 in reply to yorkieme]

Thank you for the reply! Prayers it stays away

[PMRfacebook]

I feel your pain and frustration. Like you i thought I was destined to live with this disease, pain and limited mobility forever. After 4 years I managed to get off steroids and it took me the quoted 12 months to start feeling "nearly" my old self again. Please have belief you will be free of pain but it does take a long time and all you can do is try and live the best life you can in the meantime - all the best 👍

[Bambi1234567 in reply to PMRfacebook]

Four years seems to be common! I guess day by day now for me.

[alangg]

It took me nearly 3 years to get down to 'pred zero' and then another 6-9 months before I realised that I had no symptoms (other than being 3 years older!). And I think that I was one of the lucky ones so please, don't try to rush it.

If the pred is controlling your symptoms and you are SLOWLY tapering the dose, and you are not pushing yourself hard by doing strenuous, physical exercise, you will get there.

Good luck.

[Bambi1234567 in reply to alangg]

Thank you! Gives me hope!

[Ozziedays]

I took my first pred tablet (25mg) on 17 December 2020, and my last (0.25mg) mid November 2022, although I’m still taking methotrexate which was introduced about half way. The current plan is to come off that around May 2024 all being well. (I’ve recently moved from Australia back to UK and am following my Australian rheumatologist’s plan until anyone here says differently).

I know I’m not out of the woods and it could all come back and bite me on the bum again at any time. I’m getting on with life, but not overdoing things (I think a stressful year may have contributed to developing it in 2020). I feel very fortunate indeed to be where I am today but am not taking anything for granted.

[Bambi1234567 in reply to Ozziedays]

May it stay away! Thank you. I often wondered if stress got me here too.

[cranberryt]

Everyone is different. I am approaching 4 years. I am down to 2mg but the disease is still active and I haven’t been able to get lower than that. Even 1/2mg at this point makes a huge difference for me. I would love to be off it but at the same time I am content with staying at my 2mg as long as I need it.

[Bambi1234567 in reply to cranberryt]

Amazing how such a small amount makes a difference. I am at 9 again after some very unsuccessful tapering. Went back up and now using the ultra slow tapering method. Thanks for the reply!

[HeronNS in reply to Bambi1234567]

I've been on pred since 2015 most of that time at or around 2 mg, with a brief and unsuccessful flirtation with 0 a few years ago. Can attest to the fact that even half a mg can be useful!

[Bambi1234567 in reply to HeronNS]

thank you! Currently I have been feeling awful since January. Trying to get the right amount of prednisone has been tricky. Just so tired and generally feeling awful. I wonder if a flare up lasts three months?

[DorsetLady PMRGCAuk volunteer in reply to Bambi1234567]

If is a flare- and you don’t get it under control then it is possible it will last 3months -but I would also question if it’s all down to your PMR.

The figure often quoted for adrenals to reawaken is 7.5mg, but that’s just an average - for some it can be as high as 10mg. Your tiredness and feeling awful could be that -have a look through this link from the FAQs -

healthunlocked.com/pmrgcauk...

[Bambi1234567 in reply to DorsetLady]

Thank you for that link! you are so knowledgeable on this! Will read. I have had so many other blood tests and heart stress test to rule out other things. Nothing comes up! At this point I feel it is the adrenals. Glad to hear 3 months isn't out of the question.

[DorsetLady PMRGCAuk volunteer in reply to Bambi1234567]

If it is a flare, you do need to address that - left untreated it is likely to get worse…but sometimes it’s difficult to pinpoint exactly what is the root cause of your issues….

[Bambi1234567 in reply to DorsetLady]

My Dr did try to treat it. Gave me higher doses of pred over 3 weeks. Not sure anymore what is right! I find you ladies seem to know more! had me on 30, then 20 then 10. Now on 9 for two weeks then retest. I maybe felt better for a few days in those three weeks.

[DorsetLady PMRGCAuk volunteer in reply to Bambi1234567]

Would have thought/hoped that 3 weeks at the higher doses should have sorted things out- always assuming it is PMR. But if you didn’t feel significantly better, then maybe doctor should be considering other things - although what, I’m not sure.

[Bambi1234567 in reply to DorsetLady]

oh they have, iron transfusion, heart stress test, sleep study, thyroid ultrasound 😂funny but not funny. Thanks for the reply! Will figure it out! So far only thing is PMR

[HeronNS in reply to Bambi1234567]

Have you had any other health problems? Like a case of the virus no one wants to name any more although it's running rampant through all populations? If not, then it certainly sounds like adrenals. I remember having this at around 4 mg, can't remember how long it lasted but it may have been all that summer. But other than fatigue (I felt like I was walking through water, it was so much effort) I don't recall any other negative health issues. Probably also related to adrenals at around 7 mg I felt panicky (no other word to describe it) although there was nothing to be panicked about. Like the later fatigue it disappeared without my really even noticing how or when, but I don't think it lasted too long, maybe three weeks?

Do you make sure to get enough rest? It's important to maintain physical fitness and remain active, but also not to overdo it, and to allow enough recovery time. Also stress avoidance, although that can be easier said than done!

[Bambi1234567 in reply to HeronNS]

Had that virus six months ago! I think it is adrenals too. I have this weird shortness of breath and just had stress test and my heart is good. I am on 9 mg now and then they will retest my numbers in a few weeks. happy to hear yours lasted months as well. Maybe I am at the tail end and will feel better soon. Thanks for the reply!

[HeronNS in reply to Bambi1234567]

Do tell your doctor about the shortness of breath. My husband had the virus last April and since then has had several episodes where he's needed to use a puffer for a few days or weeks. He does have other health issues, not PMR, but this type of episode has only occurred since last spring. Actually I think the first was in September. He's in the middle of what I think is the third.

[Missus835]

I hope it does, but no definitive answer. PMR is a disease with a "mind" of it's own. Unpredicatable. It seems to morph at will. I guess the old saying "expect nothing and we won't be disappointed" applies? All the best to you.

[Bambi1234567 in reply to Missus835]

You got that right! Glad we can all commiserate. Thanks for the reply