Can PMR last for 5years+?

[Phoebe12345]

Hi allI was diagnosed with PMR in March 2019 after sudden onset of symptoms. CPR 95.3, ESR 71 which came down quickly after 15mg pred. Reduced to 5mg first year which continued for a further 3 years, then down to 2.5mg in the 5th year. From March 2023, neck and shoulder problems and flare December 2023. GP referred me to Rheumatology who I saw in March 2024.

Rheumatologist completely dismissive of PMR which he said only lasts for a year, 2 at most. Said it was a misdiagnosis and thought I had ankylosing spondylitis. After MRI, diagnosed with degenerative disc disease not AS. No rheumatoid factor. He recommended swimming, physio (35 week waiting list) and co-codamol.

Stopped pred end March. After a few days grace, all hell broke loose with resumption of what feels like exactly the same symptoms as 5 years ago. Severe pain head, neck, shoulders, collar bone, ribs, hips, knees. Unable to sleep/turn over in bed due to pain. Unable to walk properly. Mobility and flexibility awful. Re-started 5mg of pred 7 weeks later. Much better. Still a fair amount of pain, particularly head, neck and shoulders but thankfully mobility and flexibility back to normal.

My problem now is trying to persuade the GPs at my practice to continue my pred prescription who, presumably following guidelines, are very wary of prescribing again because of the length of time I have been taking it. Also CRP 3 weeks after stopping pred was only 9.5 (ESR no change, 2). They consider the CPR reading to be too insignificant a rise to justify pred.

The thought of managing at the moment without pred horrifies me. It's the difference between being able to live a normal life or not.

I've had a look round the Internet and found a couole of things which might be useful but I wondered whether you very knowledgeable people may have some killer information I can show the doc about a) duration time of PMR (we all know it can be a lot longer than 2 years but proving it?) and b) prevalence of PMR where inflammatory markers are low.

In my favour as regards the possible downside of pred I'm very fortunate that a recent dexa scan says no treatment required and there are no signs of liver problems or diabetes in blood tests. All grist to the mill!

I would really appreciate your help. You are the very best source of information and advice on PMR.

[PMRpro Ambassador]

Not a very bright rheumy there - 1 to 2 years is rubbish!!! I've had it 20 years and am under one of the top PMR experts in the world - and HE doesn't think it is something else. Not least because there isn't any sign of anything else to account for it! And there is a growing band of Long PMR patients on the forum.

Lots of work supporting the concept of PMR/GCA without raised markers but in a flare like this they can lag behind symptoms for a very long time.

There is a recent myth buster article from Prof Sarah Mackie - the 2 year PMR myth is one, it is in a Newswire issued relatively recently.

Where in the UK are you? Is a single private appointment with someone who DOES believe it can last a long time so you can work with them remotely and the GP locally?

Does this help?

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

"We show that 40% of PMR patients are still treated after a median of 5.16 years"

What I'm not in agreement with is that these stubborn cases are in older patients - our experience is that younger patients at onset (not necessarily diagnosis as we are frequently not diagnosed in a timely manner) are more likely to have low blood markers and what a lot of doctors term "atypical" presentations though we see a lot of patients with those presentations. And mismanagement in the early stages increase the problems managing symptoms and later getting off pred.

There is a lot of new thought about PMR, its relationship to LVV and GCA and a lot of rheumies are desperately out of date.

[Phoebe12345 in reply to PMRpro]

Thanks very much for your reply. A helpful article for demonstrating the complexity and unpredictability of real life PMR, the many important questions to find answers to and that duration and treatment is not as cut and dried as some would have us believe. I am so cheered by the possibility of seeing a more enlightened rheumatologist! I live in south east England and would really appreciate any contacts. Thanks again.

[PMRpro Ambassador in reply to Phoebe12345]

You did see it is 2 different articles - the links look the same, they aren't!

Rod Hughes in Chertsey is our go-to for people stuck with less able rheumies!! He will listen, and make a considered decision as to whether he thinks it is PMR or something else.

finder.bupa.co.uk/Consultan...

gives contact details for his secretary Jody Evans that I think are correct

also 02 07031 3403

[Phoebe12345 in reply to PMRpro]

Brilliant, thanks so much. Chertsey not far from me. I'll give it a bit longer as yet to receive final decision, just rumblings. Will let you know how it goes. I thought it was 2 links but every time I clicked the same one came up! Will try on laptop rather than phone. Thanks for pointing it out.

[PMRpro Ambassador in reply to Phoebe12345]

Definitely 2 - the first one is from a southern Italian group and the second from our very own Sara Muller in Keele.

[Phoebe12345 in reply to PMRpro]

Morning, I've just been looking at a NICE document dated February 2024 which is helpful. It says 'raised inflammatory markers are supportive of a diagnosis of PMR although if the clinical picture and response to steroids are typical, the diagnosis can be made with normal inflammatory markers' and 'the minimum expected course of corticosteroids treatment is 9-12 months. However, treatment for three to five years is not uncommon and in some cases, may be lifelong. Relapse is common. Less commonly, there is a chronic relapsing course that may require prolonged treatment (BMJ Best Practice 2023).

[PMRpro Ambassador in reply to Phoebe12345]

Hallelujah!!! Though where anyone gets the idea of 9-12 months of pred is enough beats me!! But that has the hallmarks of some Sarah Mackie and Baskhar Dasgupta input. Would love to see that - can't though as NICE doesn't get a passport ...

[Phoebe12345 in reply to PMRpro]

I know, crazy. I just put in a search for NICE guidelines, more in hope than expectation, as I didn't know there were any, and it popped up. Loads of references. Sorry I can't find a way of sharing the link but it's publicly available so should be easy to access.

[PMRpro Ambassador in reply to Phoebe12345]

Is it a NICE Clinical Summary? Only available in the UK. WIll have to wait for next week, someone remind me!!

[Phoebe12345 in reply to PMRpro]

Sounds like it. NICE CKS? Not titled as such.

[PMRpro Ambassador in reply to Phoebe12345]

Yup - I'm barred ...

[Phoebe12345 in reply to PMRpro]

Outrageous! Had no idea there were restrictions on anything Internet.

[PMRpro Ambassador in reply to Phoebe12345]

Oh yes - not on the things that SHOULD be restricted though!

[Phoebe12345 in reply to PMRpro]

Couldn't agree more!

[PMRpro Ambassador in reply to Phoebe12345]

There are still geographical restrictions on TV - I can't use some BBC websites or Austrian and Swiss ones at present, even in this area where we get Swiss and Austrian TV as an arrangement! But the EU is in the process of changing that - I hope that means I will get access to Austrian and Swiss sport if I return to the UK.

[Phoebe12345 in reply to PMRpro]

Really interesting (but frustrating). Fingers crossed.

[PMRpro Ambassador in reply to Phoebe12345]

I can't see the BNP prescribing bible which was something I used a lot in translation work! So I used to have to beg an old one from medical friends in the UK.

[Phoebe12345 in reply to PMRpro]

I've just had a look at the latest version. That's a fascinating tome I'd never heard of and will no doubt be poring over again! Interesting it gives maintenance dose for pred as 2.5-15. A doctor I saw recently said she would give her patients 1mg as a maintenance dose and no more. So good to have facts at your fingertips. Are the country restrictions related to us coming out of Europe or has it always been the same?

[PMRpro Ambassador in reply to Phoebe12345]

No, always been like that as far as I know, The USA has some they won't let people outside the US see.

Prof Dasgupta uses 2-3mg as a maintenance dose. You need enough to reduce relapses. No point using 1mg if it isn't enough.

[DorsetLady PMRGCAuk volunteer]

See this from Charity - has a couple of links to studies..

pmrgca.org.uk/pmr-myth-bust...

[Phoebe12345 in reply to DorsetLady]

Thank you for your helpful links. I haven't seen Newswire before. Will try and subscribe.

[DorsetLady PMRGCAuk volunteer in reply to Phoebe12345]

If you join charity (£15 annually-open to all) you get 3 copies -either emailed or hard copy free -

pmrgca.org.uk/how-to-help/b...

[Phoebe12345 in reply to DorsetLady]

Fantastic, another bit of good news!

[Rugger in reply to DorsetLady]

We should encourage everyone who is able to join the charity - and buy notelets too, to spread the word!

pmrgca.org.uk/notelets-for-...

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Agree -and Christmas cards at the time…

There are quite a lot of overseas patient on this forum who join, and we do mention it’s open to all (not just UK residents) on here regularly.

Think on recent webinar an opportunity was missed by the charity by not making more of this forum and the number of patients we reach on here.

[Charlie1boy]

Oh dear! I’m sure you’ll get plenty of replies, but meantime have a look through the Frequently Asked Questions on this Forum.

However, by way of a quicker reply, my GP told me, at diagnosis that pmr COULD last two years, maybe longer and it may be chronic! In fact, I was on steroids for very nearly eight years before getting to zero.. Also, research in the USA showed that the average time for treatment for pmr with steroids was 5.8 years. I’m sure other replies will tell you that the two years time for pmr is a myth!

Will not say more for now, so hopefully you do manage to get this sorted.

Good luck.

[PMRpro Ambassador in reply to Charlie1boy]

The MEAN time, not the average, half of patients take up to just under 6 years to get off pred - so obviously, half of patients take even longer!!!!

[Phoebe12345 in reply to Charlie1boy]

Thanks for your reply. Good to hear you're down to zero after 8 years. Hope for us all yet!

[Bridge31]

I’m speechless. Poor you having to suffer like that. The vast majority of us know that 2 years at the most is rubbish. I’m five years and can’t see myself getting down to zero any time soon.

Please make as big a fuss as you can and I hope the studies you can show will persuade them.

[Phoebe12345 in reply to Bridge31]

Thanks for your kind words. Appreciate you taking the trouble to reply. Best wishes in your PMR journey.

[Sophiestree]

I won't add other than you need a new consultant. I'm sure if you say where you are someone will come up with some suggestions. If you can afford to pay for the first appt to get the ball rolling that might be a better option.

[Phoebe12345 in reply to Sophiestree]

Thank you. Appreciate your thoughts.

[Rugger]

I have had PMR and GCA-LVV for 8 years and am under the care of a top Rheumatologist (different one from PMRpro's in Italy). Mine has no qualms in saying I need to be on whatever dose of pred treats my symptoms for however long.

Best wishes.

[Phoebe12345 in reply to Rugger]

I'm glad you have such a good Rheumatologist. What a great comfort to know you are receiving the best treatment possible. I wish you all the best.

[Louisa1840]

Isn't this forum a Godsend, Phoebe? Just reading all the lovely, supportive comments to your post, gives me a warm glow! I too met a rheumy who insisted PMR only lasts 2 years. I wrote a letter of complaint to her office quoting some of the latest research. I also told my lovely GP who was shocked and said she would no longer refer patients to her. Lately, I've heard she's retired.......I'm tempted to say " No great loss" but would that be uncharitable?

[PMRpro Ambassador in reply to Louisa1840]

Probably not!! One female I saw insisted she could "feel" OA and that was causing the knee pain. Thirteen years later an x-ray showed absolutely no sign of problems in that knee! Since she was ages with OH and me as well as being a colleague I trust she IS retired ...

[Phoebe12345 in reply to PMRpro]

😀 what a gift to have!

[PMRpro Ambassador in reply to Phoebe12345]

What I always say - can see through skin and bone - the potential for cost-saving for the NHS is enormous! There are a lot of them around ...

[Phoebe12345 in reply to Louisa1840]

It is. I've looked at the forum so many times over the years. There is nothing else like it. You did well to stand up for yourself with the rheumy and get your GP to stop referring patients to her. I wish I could take all of you with me to the docs. It would be quite a formidable bunch!

[Hulotsholiday]

Sorry to hear of your difficulties. Only to add, I was diagnosed in 2017 after two years of symptoms. No elevated markers but within 3 hours of 15mg of pred, I was transformed from a hobbling wreck. I could even stand from seated unaided. It’s been a bumpy journey since. I did get off totally about 18 months ago, but symptoms returned within a few weeks and after a severe flare following covid booster in Nov. I was back to square 1. Currently at 7,5mg. Rheumy nurse and GP suggest a ‘maintenance dose’ will probably be required for life, so I’m aiming to get to 2mg very slowly and stay there. Good luck; you’re not alone.

[Phoebe12345 in reply to Hulotsholiday]

I love the 'hobbling wreck' description. So accurate! It's great to be able share our thoughts with people who understand. Even family and people close to us can't really understand, try as they do. Like most things, you have to live it to really get it. Sounds as though you are on a good steady path to a maintenance dose. It must be comforting not to have to rush or feel pressured to come off it completely. Very best of luck with everything.

[MiniSpec]

For myself the journey so far has been 14 years and counting! It'll be 15 years this coming October.

The last time I saw a rheumy she said that I'll probably be on Pred for the rest of my life. That's OK by me, it's quality of life I'm interested in rather than how many pills I take. As for addiction, at my age (73) who cares if I'm slowly becoming some kind of junkie? I'd rather die happy and painless than miserable and pain ridden.

Ask PMRpro, she's had PMR for 20 years!!! I'm sure there are others who don't even know about this forum who've had PMR for many many years, but either through the ignorance of the medical profession, or inability to investigate for themselves, are suffering from very long term PMR as we speak.

[Phoebe12345 in reply to MiniSpec]

How true! I completely agree about quality of life. Impossible to be cheerful if you're in constant pain. What sort of life would that be? There may be side effects from pred as with every medication. It's always a balancing act deciding between the lesser of various evils. But it should be our informed choiceti make. Best wishes

[S4ndy]

How I wish it was 2 years! I've been on prednisolone for 8 years but got my first diagnosis of PMR 16 years ago! My Rheumy has never once suggested that PMR only lasts 2 years. He's a great believer in treating symptoms not test results too. Think you need to find yourself a decent consultant even if that means a private consultation.

[Phoebe12345 in reply to S4ndy]

What a sensible Rheumy! PMR is such a strange thing isn't it? I will be trying to find another consultant. Thank you for sharing your experience. Best wishes

[cranberryt]

I was diagnosed in 2018 and I am on 2mg. Every time I try lower, I can get there but eventually that tap drips, the inflammation builds back up and I have to go back to 2mg. If you can afford a private consultation with an actual PMR expert maybe that will help. My doc left several years ago and the replacement finally starts next month. I am holding my breath to see if they will continue to support my treatment.

[Phoebe12345 in reply to cranberryt]

2 mg sounds good though. It seems to be the same for many of us that we get to our limit and beyond that it all goes wrong. I have often wondered whether PMR is something to do with adrenal glands problems before we ever start taking pred i.e. not being able to produce enough of something to keep inflammation in check. I hope your new doc is a good one and supports your treatment. Hopefully as a fairly low dose, it will not be a problem. Best wishes

[Avadip12]

hello Phoebe , your not alone . My story is Same as yours , I have been treated for 20 yrs up and down on steroid from 15 mg ~ 4 mgs . Never get lower , everything returns if I try . I was also told that it only lasts 2 yrs ! And also my blood test have never peaked like they did when I was first diagnosed. Ankylosis spondylitis is diagnosed by a blood test , it carries a marker HLA-B gene . Hope you get better soon . It’s all so frustrating

[Phoebe12345 in reply to Avadip12]

Hello, amazing how determined you've been to keep trying to get down to lower levels of pred despite all the setbacks. Interesting to hear your blood tests have never reached the early levels. Mine were pretty low at the last reading which didn't reflect at all what I was feeling. It seems that pred withdrawal can, in itself, cause similar symptoms so it's really difficult to know how much that has a bearing on anything. I wish there were better blood tests to pinpoint things more. Yes I had the gene test for AS and it was clear. Also the spine MRI did not show any signs of it so at least that and rheumatoid arthritis have been eliminated. I have degenerative disc disease with some disc protrusion which seems fairly common in people of my age (71) so it seems unlikely that would account for the pmr symptoms. Anyway, good talking to you. Keep on doing what you're doing! All the best