New here, need some advice please, has pmr returned and what should i do?

[exdd]

Hi

I was diagnosed with PMR in 2011. Although i had what i believe are fairly common symptoms (debilitating stiffness/pain around shoulders and front of hips, general weakness, shivery but no detectable fever). My diagnosis took a while as i was apparently not the typical demographic of a sufferer. I started on 15mg prednisolone, increased to 20mg and tapered from there. Although i was finished within 2 years, which I now realise makes me a lucky one, this was not without problems. I had to deal with shingles and a lot of other strange symptoms around 7-8mg. I wish i had found this community then.

In the last few months i have developed some unexplained symptoms quite different from my previous experience. The worst and most persistent of these being swollen and painful hands and fingers. Other symptoms have been changeable and less severe, some pain and stiffness first in the shoulders later in one leg, these have often been associated with old injuries.

I saw my GP regarding the swollen hands which were making sleep very difficult. After a look at my notes and very little examination, he suggested i start taking steroids immediately. I was reluctant to do this so we agreed to wait for the result of a blood test. This showed normal ESR levels so i did not start on the steroids. The hands did not improve however and i went back to the GP who prescribed some naproxen (an NSAID) and took some more blood. It seems the ESR level is now raised and he again recommended steroids. We agreed to wait a week. Since then my hands and general health are slightly better due to a nights sleep after naproxen, but i am far from normal.

I would very much welcome help with the following:

Has PMR returned or is there some other possible explanation?

If it is PMR, i find i can manage it and i do not start on steroids, how long might it take to run its course and are there other health implications?

Can any one suggest anything, nutritionally or some complementary therapy, that might help me deal with this without steroids

If i start on prednisolone, is there a period when i could stop suddenly before my body has become dependent?

Many thanks for any help

[PMRpro Ambassador]

Hi and welcome! Unfortunately once you have had PMR the propensity for it to come out to play again remains!

You could try what I did: 2 weeks each of 15, 10 and 5mg per day and then stop which is a perfectly normal taper for other things. The swollen hands might be RS3PE syndrome which does appear alongside PMR and also responds well to moderate dose pred - it often also affects feet and can extend partway up the limbs.

If it is PMR - no, no options that will replace pred although they may help alongside pred to mitigate pred side effects.

[DorsetLady PMRGCAuk volunteer]

Did he check for other things -like rheumatoid arthritis?

You could trial steroids for a couple of weeks -easy enough to come off them if there has no improvement.They are very often used short term for lots of problems with no long term implications.

How long can PMR last -anything from 2-6 years.

Health implications - worse case scenario-developing into GCA for one -and uncontrolled inflammation within your body can affect anywhere & everywhere.

[exdd in reply to DorsetLady]

A blood test for Rheumatoid Arthritis was negative, but no other possible diagnoses have been considered

[PMRpro Ambassador in reply to exdd]

You can have sero-negative RA - and there are no definitive tests for RA.

[cranberryt]

I got the feeling from the last rheumy I saw that feet and hand pain/swrlling generally pointed away from PMR and to RA. If that is the case you might want to explore that instead of jumping into long term prednisone.

[PMRpro Ambassador in reply to cranberryt]

Leeds doctors did a study - unfortunately not published - that showed feet and hands can be part of PMR.

[Janbay46]

I have PMR, down to 4.5 mg Pred from an inital 20 mg, and sometimes have swollen hands and can't make a fist- not much pain, though. I also at times have painful knees, probably at least partly from too much walking. I play the flute aaround an hour every day, maybe the swollen hands might also be from overuse?

I think it is caused by PMR, not RA or osteoarthritis, because the pain and swelling in hands and knees is always symmetrical Left and right. Also when it goes, as it does eventually, it goes completely. I think this must mean no long-term damage to the joints, would you agree?

[Selfbuilder]

I'm not an expert but would try the pred as that seems to be the pragmatic diagnostic tool; ie if pred fixes it, it's PMR! If the problem doesn't respond, back off the pred.