Can PMR last a lifetime?: I have had this condition... - PMRGCAuk

PMRGCAuk

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Can PMR last a lifetime?

Singer60
Singer60

I have had this condition for around nine years now since I was aged 59. It took some time to be diagnosed but the relief from prednisolone was miraculous and I got my life back! Otherwise I am an extremely fit male and do regular exercise (swimming, cycling, running etc) . Unfortunately I have never been able to get off this medication. My GP insists that this condition should have burned itself out in around three years and I suspect she thinks that I am lying or a hypochondriac when I have another flare- up, as the ESR blood tests are usually normal. Prior to the current flare-up I amazingly managed to get down to 2 mg prednisolone per week (ie almost nothing) through extremely gradual tapering over almost a year, recommended by a consultant my GP referred me to. It is just so disappointing that the pain has again returned with a vengeance. This is about the fifth flare-up I have had over the nine years when getting down to really low doses. The consultant who recommended the tapering scheme said that if the pain returned I should just try paracetamol. I have been doing that for 3 weeks now and am now almost housebound with severe neck, shoulder and hip pains and general exhaustion. I seem to remember the consultant telling me that around 20% of those afflicted can never get free of this condition, but I have never come across any research supporting that figure. Maybe I misheard. Has anyone else come across such evidence? My quandary is whether to keep trying to get off pred., with the the associated disappointment and pain when failing; or whether I should just accept that I will be on medication for life. Low doses (around 2-3 mg daily) seem to keep the pain, stiffness and tiredness at bay, and I am fortunate in not suffering any obvious side-effects from the prednisolone.

Most grateful for any advice. Many thanks.

33 Replies
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Hi Singer

Did you listen to Prof Dasgupta’s Webinar?

pmrgca.co.uk/content/pmrgca...

You may find it interesting what he has to say about keeping some patients on low dose Prednisolone indefinitely.

When l got to 5mg my then Consultant said l may be on 5mg for the foreseeable future but she didn’t see any issue with that. (Currently on 12mg)

Best Wishes

MrsN

Singer60
Singer60 in reply to MrsNails

Dear Mrs N

Thank you so much for your reassuring reply. I have now listened to Professor Dasgupta's video and have decided on that basis to up my dose and try to survive subsequently and indefinitely on 2-3 mg with a clear conscious (providing I can persuade my GP). I think others will be very interested in your reply and Prof Dasgupta's views. It is the first time I have heard this advice from a medical source. Thanks again and good luck in reducing from 12mg.

MrsNails
MrsNails in reply to Singer60

I was only in conversation last night with two friends who are long time Members but had missed the Webinar so they were both grateful to view it.

One have them has definitely decided that she realises now she may well be on 5mg indefinitely, her husband is a GP & she encouraged him to listen too.....

I’m glad it was helpful to you.

Keep in touch & let us know how you are getting along.

MrsN 🌸

Hello Singer! My entirely non-medical opinion is that if you manage PMR at these very low doses simply don't worry about it! I have heard that below 5mgs daily is nothing to worry about and if that's what you need to be pain free then, go for it! Plenty of people are on medication for life e.g my husband is Type One diabetic and relies on insulin to keep himself alive.

Listen to your body. Employ common sense and remember that PMR wasn't even recognised as an illness until 1969 - they don't know that much about it but WE do because we have it and we are ALL different! do what works for you.

Singer60
Singer60 in reply to Louisa1840

Dear Louisa

Many thanks for your helpful reply, along with others in the same vein, which reinforces my own sentiments.

PMRpro
PMRproAmbassador in reply to Louisa1840

PMR was first described in 1888 and GCA in 1890! They had different names but they knew it was an illness. People complain about the name polymyalgia rheumatica - it used to be called senile rheumatic gout ...

Louisa1840
Louisa1840 in reply to PMRpro

Oh dear Pro, there are days when I feel very much like senile rheumatic gout sums me up. Wheel out the bath chair!

I think it would wake a few 'so called' experts up if we insisted on calling it SRG. Gout pain is excruciating - especially if the crystals get stuck.

PMRpro
PMRproAmbassador

The figure I know is about 5% need pred for life but it isn't clear if that is PMR or adrenal function related.

The Matteson work suggests 40% of patients are on pred at some dose at 10 years.

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

same source, different views.

Me - whatever it is, 15 years and counting...

Singer60
Singer60 in reply to PMRpro

Many thanks for your reassuring and informative reply which is in line with others received. Good luck

Six plus years for me and have yet to get below 10 mg. While it may be unusual to need a small dose for the rest of my life, I'd be happy to join that group.

Has your doctor checked for other causes for your pain? For me it turned out that the higher doses of prednisone had masked osteoarthritis that had developed (confirmed by x-ray). My hips, shoulders and neck are not happy places, especially in the morning. Paracetamol doesn’t do a thing for my pain. I do a daily series of stretches I discovered from physical therapists on YouTube(!), take an occasional ibuprofen and sometimes a high-quality CBD oil. That and staying as active as possible works for now.

I’m at 2 mg prednisone after 4+ years of PMR. My blood work is “stable.”

Once I reduced below 5mg my rheumatologist said there was no urgency to reduce more if I didn’t feel that I could. My endocrinologist says the same thing to me.

I sat at 4 mg for about a year before making the slow reductions that got me to 2 mg. My rheumatologist said she’d rather I bump up a mg or two of pred if needed versus adding more ibuprofen.

PMRpro
PMRproAmbassador in reply to SusanEleven

Who is THIS paragon of virtue!!!!!! Wonders will never cease :)

SusanEleven
SusanEleven in reply to PMRpro

I am so lucky. She’s a brilliant and caring younger doctor originally from China. I’ve previously told her about this group and she asks me to let her know hot topics of discussion! She welcomes new information.

Random side notes: A few years back she told me her PMR cases had a rhythm; there will be months with zero new cases and then batches come all at once.

Also, she starts everyone at 10 mg and quickly increases if pain does not resolve. (I was successful at a start of 10.) If a patient’s pain won’t resolve by a 30mg dose she says it’s probably not PMR and keeps digging for answers.

PMRpro
PMRproAmbassador in reply to SusanEleven

I think that is probably right enough - I'm sure there is a paper somewhere about the seasonality of both GCA and PMR. I wonder if people manage over a summer and then the cold weather makes them uncomfortable? Does she say if she sees particular seasons? I'll excuse her the low starting dose if she doesn't make a fuss about getting off at the other end!

Singer60
Singer60 in reply to SusanEleven

Thanks Susan. Yes I have been tested for various things, including osteoarthritis.

Hi , I’ve had PMR for over 7 years now. My rheumatologist told me around 20% of sufferers have no raised inflammatory markers .

He also said I may need to stay on a low dose of prednisolone indefinitely. I’m on a low dose, it doesn’t take the pain away completely, but I can manage , the fatigue is more debilitating.

After a recent flare , I remember how awful it is.

I don’t think it goes away until it’s ready , plus we don’t know if the adrenals are working. I fear mine aren’t . Hope you get some advice from the wonderful people on here .

Yes, all replies are so helpful. Great to realise I am not alone!

You've had a lot of very good advice on here Singer. Listen to your body and take what pred you have to.

I am one of those "for life" PMR's - it worried me when first told (about 3 years ago) and I still kept trying to reduce (with the usual results). I don't worry any more - I'm stuck on 4mg - so be it!!

Anyway, it's much better telling people you have PMR rather than "senile rheumatic gout".😂😂😂

I think it is remiss of her not to send you to a specialist. My Rheumatologist has mentioned that my difficulty in tapering was probably due to the GCA, I had, waiting in the wings. There is more to these diseases than some GPs suppose. What you need is someone who is at the cutting edge of research into our diseases. Where in the country are you?

It is reprehensible to add guilt to your suffering.

Thanks Jane. I have seen a Rheumatologist who put me on a very gradual tapering programme, the end-result being the current flare-up. I am in Edinburgh where there is huge waiting list for Rheumatologists (especially now) and I suspect others need this service more than myself. I get the impression that research on this complex condition is slight and not a priority, probably reflecting an element of ageism and the fact that prednisolone is very cheap and very effective in treating the symptoms, notwithstanding side effects.

An uninterested Rheumatologist is worse than none. I agree about gender and age bias being a factor on treatment for us. I have volunteered for a large research programme, looking at susceptibility to our diseases and why they impact on some patients in a much more severe way. This research will involve taking my DNA and following the Genome. I have seen so much more interest that when I began 4 weeks ago. It makes me feel hopeful.

I have been to three uninformed uninterested rheumatologist s in Virginia and I swear I know more about PMR/GCA than all 3 put together. So I tried a vascular surgeon last month. He asked me about my symptoms and before I could even complete my first sentence, he kindly told me I had come to the wrong kind of Dr and needed to go to a rheumatologist. Can't win!

Surprised at this really. My Rheumatologist works closely with aVasculitis specialist.

Pain killers DON'T WORK for PMR so forget the tablets. When I first went to my doctors 8 years ago he gave me Tramadol. It had zero effect on my pain, lucky he sussed the PMR fairly quickly. PS still on pred 7mg can't seem to get much lower.

Hi Singer

I am one of those Mrs Nails mentioned. Over 6 years ago when I was diagnosed I was told my the Rheumatologist, who was well qualified and experienced that “in 2 years you will be cured” 1 year and 11 months later when I was happily swimming with sharks in the Maldives having uneventfully tapered to 3mgms, I had a flare and I have been flaring regularly ever since. No problem getting to 5 tapering using the dead slow method but then back comes the symptoms, this time it’s the headache and heavy arms, so back up to 10 for a while. There used to be a Zero Club on here for those who got to the other side, Dorset Lady is a member. My fellow sufferer has decided to be a five a day girl, it’s a bit more that Prof Das Gupta recommends but I think that’s where I am going.

A lot of us seem to having a crafty flare, I wonder if the Covid stress has got to us high and fast reactors.

Don’t worry about your GP, I was talking to my other three quarters about the ignorance of his mates, he says it’s because it is pretty rare, maybe two patients in a list of over 2000 and many GPs never see a case of GCA, mine hadn’t.

You are definitely not a hypochondriac, just a normal patient who knows his body. You may or may not get off it, what you need now is sufficient prednisolone to enjoy your life symptom free now.

Show him/ her the research

Take care

🥂

Singer60
Singer60 in reply to EdithWales

That is the conclusion I have reached too. Thanks to you and everyone else for your advice. Feel much better now about my situation and have decided to self-medicate at 5mg. (I have a secret stash of pred! Will let you know how I get on.

Best wishes to you all and good luck.

Singer60,

My present Rheumy told me I may be on Prednisone for the rest of my life. I am on 1.5 to 2 mg now and I am doing OK. My first Rheumy said the same thing. It is a low dose so I do not mind

AdoptMeow
AdoptMeow in reply to enan-illuc

Eight years ago I saw a rheumatologist for swollen hands. Xrays did not show RA, but he told me I would need to take 5 mg pred daily for the rest of my life. But he didn't explain and I didn't continue after the first prescription was gone. Maybe doing so would have avoided the past two years of pain and immobility.

Hidden
Hidden in reply to enan-illuc

I have never been told how long PMR lasts by any Rheumy in the 12 years since being diagnosed with PMR. I do remember my long-time rheumy voicing a concern that I might never get off prednisone. In retrospect, I think she was more concerned about adrenal function than PMR.

My new rheumy said that if I was taking 2-3 mg daily he wouldn't have any problem with that. He was also wise enough to know that a prednisone dose in excess of 10 mg for over 10 years wasn't good. Throwing more and more prednisone at the problem wasn't an approach he wanted to continue so he prescribed Actemra. I think you are taking Actemra too. It has been a complete game changer for me.

enan-illuc
enan-illuc in reply to Hidden

Hi DadCue,

Yes I am taking Actemra/Tocilizumab and it has really helped me. I have not had any side effects...yet.

Hidden
Hidden in reply to enan-illuc

Since our Midwest PMR support group never got off the ground, maybe we could start an Actemra club instead. However, there might be even fewer people interested in doing that.

PMRpro
PMRproAmbassador in reply to Hidden

You'd hope they don't need to be members for very long!

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