PMRGCAuk
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Polymyalgia relapse?

Hi all, I was diagnosed with Polymyalgia in February 2012 I was given 20 mg predisolone straight away which worked immediately and have been pain free since then. I do have little niggles here and then, so I am not grumbling at all. The beginning of April 2013 I managed to get down to 3mg, (I was on 5mg for a good while), but noticed a few days later that those little niggles were turning into big niggles and here we are two weeks later and I have real trouble with my wrists, knees, fingers and bottom of my feet. As anyone experienced these problems and if so should I up my steriods? I have had a CRP test and I am due for a bone density scan next week, then to the Rheumy for results. Any information on this would be appreciated. Angie x

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I do sympathise but I also think until you get your blood results you won't have a guide as to whether it is PMR back or withdrawal from steroids giving you these problems. I have had lots of weird pains getting down from 3 mg to 1.5 where I am currently. Getting under 5 mg seems to be very difficult. Did you reduce very slowly? I only went down 0'5 mg every fortnight and sometimes longer. It takes a long time for the adrenal glands to wake up and under 5 mg they have to start to work hard! Best of luck and would like to hear what the rheumy says. Cath

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Sorry Jannyrose I meant to say I wouldn't up your steroids without talking to your GP at least. You seem to have done son well to get down to 3 mg in 12 months so it would be a pity to go back up unless you absolutely have to. I think you have probably come down too quickly...down 2 mg in less than a months is a big drop. Perhaps your body will soon adjust to the lower dose. May be take regular paracetamol until things settle. Cheers

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Hi Cath, congrats on getting down to 1.5 and your advice I shall be there one day hopefully. I did not reduce slowly unfortunately and have learned my lesson. I dropped from 5 to 3 in around four weeks and the pains and aches in my feet got worse until I had trouble walking. I have to wait at least 8 weeks now to see my Rheumy for all my results and I couldn't wait that long so I put myself up to 6mg and I feel wonderful. My hands and feet are back to normal, so now I shall reduce very slowly. When I was originally diagnosed with Poly in 2012 I had no problems with my hands and feet so it was strange I should suffer with them this time on reducing. My Rheumy looked a bit confused I must admit when I told him I was having problems moving my hands and feet because of the pain. Take care x

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I have the odd niggle in the couple of weeks after a drop. Recently down to 2.5, I am having some aches when I'm tired but have come to accept this as a normal reaction. Once I have stopped having these effects, I will stay on the dosage for another few weeks and then drop again depending also on a blood test. my GP has told me not to rush things.

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Congrats on getting down to 2.5. I'm back up to 6mg from the 3mg, those aches & pains in my hands and feet got worse until I had trouble walking. On 6mg now and I am fine, I think I dropped to quick from 5 to 3, my own fault and have learned my lesson. Hope you go on ok x

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If you aren't adjusting to the level to which you've reduced, it's safest to go up to the level where you last felt comfortable. I go down 0.5 at a time and don't drop again until I have felt comfortable for at least two weeks, maybe three or four if I have a lot of travelling to do. I'm sure you will soon be OK Jannyrose, but take the reductions steadily and don't push yourself.

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I was told I had poly myalgia in 20012 been on steriods come off them 6 moths ago some days are good but I am starting to have more bad days what has helped me is. Exercise I go to keep fit in the local pool and exercise class three times a week it has helped a great deal.

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