Any advice please.

[Janieb293]

Hi, I was diagnosed withPMR around 3 months ago. I was given 15mg of Pred which took all the pain away and I was fine. I have since seen another doctor at the practice who has taken me off the Pred so I could have blood tests done med free. The bloods came back as normal. My doctor has now given me Naproxin and has requested an ultra sound for my arms and shoulders, l have previously had a hip x-ray and my hips are fine. The doctor thinks I am too young at 55 to have PMR (which I know isn't right). I have now been off the Pred for 4 weeks, all the stiffness and pain in my arms, neck and legs has returned and is getting a bit more everyday. I really don't know what to do, I'm at the docs this morning with a sore throat ( a different doc), I don't know whether to mention it or not. Does this sound like typical PMR? I'm so confused now!

[Nannie-C]

Speak to a different DR, do as much reading as poss then you will be able to give Dr current facts regarding PRM and why you think you have it. Good luck

[DorsetLady PMRGCAuk volunteer]

Yes, do discuss it if you can. Some people never have raised blood markers at all, and of course it you do, they should reduce once on Pred anyway. And no, as you say, you're not too young. Think said doctor knows very little about PMR, hopefully the one you see today may be better informed.

Typical symptoms? Yes!

[SheffieldJane]

That is exactly the pattern for PMR in my experience, the real clinching factor in diagnosis. No harm in the other tests but do agitate to get your Prednisalone dose restored. Good luck with doctors. A lot are not keen on this disease because it doesn't always conform to a scientific measure, statistics and tests. Old fashioned observation and listening to your patient takes time and real skill, alas our wonderful intuitive doctors of old are being replaced by confident young scientists. I know, I've got one in my family. Healing can't be taught, just nurtured. Best wishes!

[PMRpro Ambassador]

I would certainly mention it - and point out that the Naproxen does nothing and the low dose of pred did. Naproxen has side effects too - so why they get in such a knot about using pred and hand it out like sweeties I just don't understand.

And as you very well know - over 50 is the age range (and it should be considered with appropriate symptoms before that.

[Celtic PMRGCAuk volunteer]

Hopefully, if that sore throat is a severe one, not only will your GP today prescribe antibiotics for that, but will also see the sense in getting you back on the steroids toute suite, with your previous short but successful experience of being on them having very much proven that you do, indeed, appear to have PMR. Good luck.

[Edtx]

I'm 54

Very healthy and fit

PMR hit me almost overnight

Doctors say I don't fit demographic and all tests normal

8 months down the track I've been on Methotrexate for 6 months and pred down to 5mg

[PMRpro Ambassador in reply to Edtx]

What demographic? The guidelines from the rheumatologists says "over 50". The figure of "72" is the AVERAGE age. A lot of older people develop PMR so to get it to 72 there must also be a fair number of younger patients! There are a lot of people under 50 - but they are misdiagnosed as fibromyalgia/depression/ CFS and so on.

About 20% or so never have abnormal blood markers - and that is more likely amongst the younger end of the spectrum. There are several of us on here with the same problem!

[Edtx]

I'm on second rheumatologist

[arvine]

hello janieb293, you say your dr took you off pred, 15 mg, after 3 months to get basic blood tests done, baseline i guess, did you just abruptly stop taking, my understanding is you have to be weaned off slowly , even after a month, i have been on 20 since nov1, previously on higher doses since oct 12, and my gp never did blood tests before prescribing me 40 mg back then , so when i saw rheumy, first time oct 25 she said couldn,t confirm anything as pred had clouded blood levels, so question is, did you come off 15 mg after 3 months , abruptly, with no apparent side affects ?