I an 52 and had classic pmr with instant help on pred.. am pain free at moment but when I go lower than 6mg it rears its head and my esr goes up.... so back up i go.. then pain goes and esr lentils settle again.
My gp had referred me to a rheumatologist.. and I asked a friend in hospital to ask who the best one was..
She has spoken to the one I am seeing..
Who said.. (with no knowledge of me or my symptoms) that it wasn't pmr as I was too young at 52......!!!!!
Well I am now past myself with worry that he will end up making my pain come back
Written by
Katrinaroper
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7 Replies
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Hi Katrina
Oh dear. Try not to stress too much. PMR and stress don't go together very well. There are quite a few early 50s onset on the forum. I was DX at 55 but think I was 53 when the first symptoms started showing themselves. I am linking to one article that has early 50s as an age it can appear. I am sure others will be along with other resources and check out the pmrgcauk site for other resources. Good luck. If the pred worked at 15mg or so on your symptoms then I believe PMR list likely.
I was 52 when I got PMR, over 6 years ago. I did have a job to get diagnosed and it took 3 rheumatologists over 2 years before I got a proper diagnosis( by PET scan). I kept being told I was too young. If you're not happy with your Rheumatologist, do shop around as it really matters and there are a lot who don't know much about PMR, which is harder when you are atypical.
My other piece of advice is to think seriously about work- is it helping or hindering you? I am retiring properly in July as it has taken me this long to realise that my job (counsellor) has not been helping me, especially in terms of stress levels which really don't help PMR at all. I am still on 11mgs and have never got below 10 without having a flare., so I still have quite a lot of inflammation.
The international guidelines, compiled by rheumatologists from all over the world, say "over 50". In fact, there are articles that warn of missing young onset PMR because while it is more common at over 50, it DOES still occur in patients younger than that and there are case presentations of patients as young as 23.
I believe very strongly that there are many undiagnosed patients out there because they were unlucky, like me at 51, to be young when the symptoms appeared. They are saddled with labels such as "fibromyalgia", "depression", "your age", "somatism" until they are lucky enough to find a doctor who understands PMR. It took me 5 years - working it out for myself and then, when the rhumy wanted it to be anything but PMR, being lucky with a different GP in the practice who recognised the symptoms and the less than 6 hour response to pred.
Of course - there are plenty of doctors who think they know better.
But it would do them well to remember that PMR is NOT the disorder - it is the name given to the symptoms of an underlying problem of which there are several. Their job is to identify if it is one of the other causes - since some of them are potentially more serious - and if they are all negative, to treat/manage the patient's symptoms to allow a decent quality of life. If it is PMR then that management requires pred and nothing else works - so be it.
Where are you in the country Katrinaroper? Perhaps someone on here can make a recommendation. The last thing you want is a Rheumatologist with an idee fixe and whose research is out of date. I would also recommend pausing your taper, this is a notoriously difficult stage for reducing, with the complication of your Adrenal glands having to start working for themselves. I have found it quite symptomatic, particularly the deathly fatigue. It is a taper stage best taken very slowly in 0.5 drops, (says she stuck at 7 ).
Stress not, you’ve done most of this without a Rheumatologist and you have to taper no matter what. You have us.
I empathise, I too was told for 5 years that I couldn't possibly have PMR because I was too young (51 when it started). Even by two of the country's leading expert rheumatologists in the condition! Luckily thanks to a good GP who diagnosed it and all the help and info from this group I've managed to keep sane and plod along, despite the system that is supposed to help me. A recent PET CT scan confirmed I do still have it. I stuck to my guns when I kept being told I had fibromyalgia and should be on pain killers not Pred by pointing out that whatever I had was responsive to steroids and fibro isn't and I also had all the classic symptoms of PMR. I've got a nice rheumy in Leeds now who is part of Dr Dass's team. I console myself with the fact that PMR seems to be the only autoimmune (AI) thing that does usually burn itself out eventually, although I now seem to have something called Mikulicz syndrome on top. Keep going, and as my Grandad used to say, Don't let the B*stards grind you down!
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