Long term PMR

[Bellabrun]

I was diagnosed 5 years ago with PMR at age of 47, was fit and healthy and regular gym goer. I just woke up one morning unable to move with incredible upper back and neck pain. I started on a high dose of prednisolone. It has taken me a long time to get down to 4mg, I was signed off of Rheumatology 2 years ago and told just to accept the condition that I may have it the rest of my life. I have tried to go down to 3mg but my body just will not accept or function at this level as aches and joints start to flare up. I find it affects my mental health as gives me very low self esteem and at the same time of my diagnosis have been through the menopause which again has been traumatic to my body and therefore very debilitating. I. found this forum and wanted to see if other people had had this condition for this length of time? And how they cope? Many thanks.💓

[Theziggy]

If 3mg is OK you may have to accept that. Prof Dasgupta keeps patients on 2mg for quite a while - it seems to just top up their anti inflammatory defences

[PMRpro Ambassador]

Five years is about average really. One study says that the median time taken for patients to get off pred is 5.9 years - that is the time when half of patients are off pred. About 1 in 5 are able to get off pred in a year or less although seem to be at a higher risk of relapse. About a third are off pred by 2 years but then for the rest 4 to 5 years seems a common duration but obviously half of us need pred, albeit usually at a low dose, for longer.

There is a small but growing cohort of us on this forum who have been on pred for 10 years and counting, and some of us are certainly not at anywhere near 3mg. If only.

Prof Dasgupta has told us he often keeps patients at 2-3mg pred longer term as he finds it reduces the risk of relapses and a return to higher doses. Such low doses are safe to remain on.

But you say your joints flare up - joints are rarely affected in PMR. Is your doctor sure it is PMR you have and not a polymyalgic presentation of an inflammatory arthritis?

[Bellabrun in reply to PMRpro]

I believe I am predisposed to arthritis as my mother has arthritis and quite a few family relatives. Although mum was diagnosed around the same time as me. Very oddly both my parents, mum and dad have also had PMR in the last 3 to 4 years which has been cured. I

[PMRpro Ambassador in reply to Bellabrun]

PMR is never cured - it goes into remission if you are lucky but as an autoimmune disorder the predisposition for it to develop again remains. For the majority of people it doesn't come back but it does for a few. Just like for a few it never goes into remission or only after a very long time.

[Koalajane]

I have been on prednisolone for 5 years now. I got down to 4mg and had to raise it as I had a flare so now on 8mg and trying to taper. I know others who have had it longer than me

[Bellabrun in reply to Koalajane]

Thanks for that, imagine you have been through alot too and how frustrating to have to go back up again. I have learnt you cannot rush things and let your body tell you when you can change doses.

[SheffieldJane]

After 4 years of PMR I felt really unwell at 3 mgs Pred. My very thorough Rheumatologist ran a series of investigations, it turned out that I had developed GCA/LVV. Perhaps you should seek a better Rheumatologist just in case this has happened to you. I was not presenting with typical GCA symptoms. These instincts that “ all is not well” can be trusted sometimes. I was diagnosed by a specialist ultrasound scan that showed the halo effect in the arteries of my left armpit. It was a blow but at least I am not leaving unchecked inflammation in my body. Perhaps someone could recommend a star Rheumatologist in your part of the world?

[Sharitone in reply to SheffieldJane]

Were you able to feel the inflammation in the armpit? Just asking because I have had an ongoing pain (probably muscular) just in front of left armpit. I have GCA/LVV and one of the affected areas was in the collar bone area but have never been sure whether one can expect to feel it or not. I wish we had evolved with some kind of hormone that lit up structures when they cause pain. It would make diagnosis so much easier!

[PMRpro Ambassador in reply to Sharitone]

It would be unusual to feel it - but I have heard others comment about pain in the armpit with PMR. It is something to report to your medical team though as there are other causes of PMR symptoms besides the PMR we talk about here.

[Sharitone in reply to PMRpro]

Thanks, I'll get round to it soon

[PMRpro Ambassador in reply to Sharitone]

I do appreciate telling them could be easier said than done!!!

[SheffieldJane in reply to Sharitone]

No I didn’t but sometimes I think the Lymph nodes can be achey in the arm pits and neck with this. My symptoms were just a generalised feeling of being unwell. When were you diagnosed with GCA/LVV? I kind of felt that I had almost started again. I was prescribed Tocilizumab which enabled me to get down from 40 mgs Pred to 10 mgs in a matter of weeks. Because my GCA is not in my temples, I have been more concerned about my Aorta. My first scan there was normal my second, very recent one, showed some dilation. I still need this to be explained. I am pretty tired. Have you been offered Actemra? ( Tocilizumab). Sorry if you have already explained all this.

[Sharitone in reply to SheffieldJane]

PMR diagnosis: March 2020; GCA diagnosis March 2021. I was very glad when this March was over! Yes, I have had TCZ for 4 months now, and got down to 8mg. Yes, very tired. I was expecting to feel less tired on this low a dose! I hope you get an explanation, but my lot are reluctant to give any!Thanks for your reply - it gives me more confidence that GCA/LVV is not slowly cooking up again!

[SheffieldJane in reply to Sharitone]

I am a naggy patient, trained on here, with the great good fortune of an excellent, committed Rheumatologist, who is genuinely curious and enquiring. She has sent for my full cardiology report. I am more tired than ever and will see my Endocrinologist as soon as I get to 5mgs at his request. We really have to be our own advocate in these trying times. Exhausting as it is. I have found that this great Forum has equipped me better to do this. Do use FAQs.

[Coffeebeans]

You've had some great advice above which I won't repeat. I just wanted to say I was diagnosed at 46 and I'm about 2.5 years in. I'm also very perimenopausal and it's not a mix I would recommend - I can very much relate.