After affects of Polymyalgia
Posted , 5 users are following.
Hi all
I have/had Polymyalgia for almost 5 years. I was down to 1mg of Pred and was managing just fine. The doctors have insisted I stop taking the Pred and I haven't taken any at all now for four months. My blood tests are fine and show normal levels of inflammation.
I consider myself, in all other ways, a fit, healthy 55 year old female.
However, I seize up terribly. I can’t stand from a sofa or chair without pain and such tightness. When I stand, it takes seconds before I can begin to move and my joints begin to work. I can’t squat down or stand up without pain. Yesterday I went for along walk. When I got back, I dropped a glove on the floor. I couldn’t even contemplate bending down to get it. It took a minute or two for me to unlock my seized joints to be able to slowly –and painfully – bend down to get the glove, I needed to squat. I then contemplated the fact that I didn’t think I could get back up. I require support to stand from a squat position, often just my hands on the floor to support me, but yesterday, having walked for some time and seized into that position, I needed to find support from a table and then brace myself for the pain as I stood. The pain is a brief, tingly, sharp pain, never as bad as the anticipation of it.
Is this the residual effects of polymyalgia. Do others live with pain years after their blood tests say that they no longer have it?
I'd appreciate knowing whether others are in a similar position and what they have done about it as I'm getting very concerned.
Best wishes
Sharron
0 likes, 5 replies
sastew
Posted
I should have mentioned that my Polymyaglia was/is in my hip area, not my shoulders.
Anhaga sastew
Edited
I'm sorry to have to tell you that the blood tests are not definitive, neither in diagnosis nor remission. Unfortunately too many doctors don't understand this. Symptoms always rule. About 20% of patients never have raised inflammation markers even in the beginning. And it's also possible that once pred has successfully lowered the markers if you experience a flare the markers may still not increase, at least not for some time. The best way to find out if this is PMR, and from your description it certainly sounds like you are in the midst of a full-blown flare, is to do the pred test. Hopefully someone with more experience will be on in a while with more specific advice, but I have to warn you this forum has become very quiet (result of some ill-advised technical changes, better now, but too late) and many people now post on the HealthUnlocked site, the PMRGCAuk community.
If you have some pred on hand, if I were in your position I'd be tempted to try taking 10 mg for a few days. Usually if someone has a flare we only advise an increase of 5 mg, but your situation has been going on a long time. If you get a marked improvement that would likely confirm that PMR is still active and you need to go back onto pred. I actually tapered to zero earlier this year, extremely slowly, and within three weeks I was feeling PMR pain creeping back and a couple of weeks later I was back on pred. I'd taken about 2 mg for about three years, with repeated unsuccessful attempts to taper to zero, and was so hopeful this time had worked. For about six months I'd been okay at 1 mg and then .5 mg. But zero was not enough. I now seem to be stuck at 2 mg, at least for the time being. I tell you this by way of warning you that whatever your dose was the last time you felt really well it's likely you will need eventually to taper from that 10 mg (and you may be able to do that quite quickly) to a level somewhat above where you last felt mostly if not completely symptom-free. Say you last felt properly well at 3 mg (just as an example) you might have to step down carefully to 4 mg and see how that goes for a few weeks or even months. Anything below 5 mg is unlikely to have any untoward side effects even after a long time. Certainly controlling the inflammation outweighs any minor adverse effects of pred at that low dose.
If you do try this and it helps it's very important that you be able to carry on with a dose of pred without having another break. If your current GP is unwilling to prescribe pred, in spite of your current condition, I hope you can find someone else.
sastew Anhaga
Edited
Thank you for taking the time to reply. What you've said is what I suspected. Isn't it so annoying that all the doctors want to do is get you off the Pred. They have no really concern for your day to day pain. When I was first diagnosed I found this site far more useful that the advise from doctors. Thanks again.
Anhaga sastew
Posted
Let me know how you get on. Over at HealthUnlocked my avatar is HeronNS and the famous EileenH is PMRpro!
EileenH sastew
Posted
Sorry this is so late - if you want quick responses, come over to the HealthUnlocked PMRGCAuk forum!
That isn't residual PMR - PMR can last for years, I've had it 15 years. If the level of active inflammation is low, the blood markers may never rise again after you have been on pred.No-one knows why, it is just so. They may rise in the future, 4 months is a fairly typical time for this to happen if you were doing well on 1mg. Your doctors were very silly - 1mg is not posing any problems - but it may well be enough to prevent a flare. Prof Dasgupta told us a few months ago he often keeps patients on 2-3mg indefinitely as that prevents relapses.