Hi I appreciate the information and chat on here but I am also wondering about whether my symptoms are too atypical and fleeting to be pmr which was diagnosed by gp. Began 9 months ago when I was having terrible pain in shoulder mainly but also leg overnight 3 weeks running though resolving quickly doc prescribed 20 mg prednisolone reduced to 10 and then 5 over 3 weeks - bloods done and calcium very low ( I read post where this may mimic symptoms) any way a couple of months ago started getting inflammation in wrists and is very painful and restricts very much what I can do but lucky in that it is one or the other and usually quickly subsides- when I was last at docs she suggested it may be flaring up Durga damp weather ( she said a chap she knew managed great in well below 0 temps when working avrod but suffered terribly when back in uk this time of year) - anyway she said to try and reduce prednisolone while saying the object not to be in pain - at that point I actually increase to 10 mg but came back down to 5 mg - I m sorry but it seems that blood tests etc that other people have to give markers are not suggested and as my symptoms are though I feel very severe and painful( thank goodness ) they are not as yet long lasting !
Last time I posted said I was lucky to get down on steroids so quickly and i believe I am but wonderingaboutsymptomsnow and diagnosis- welcome thoughtsis anyone in same boat ? Ps I am 57yr old
the BSR guidelines include patients with normal blood values - the Kirwan group disputes this but I believe the combination of the two papers covers most eventualities.
Your use of pred has not been best practice - that is a normal taper for RA flares but does not work in true PMR, it is a longer lasting course of pred, with very much smaller reduction steps to identify the correct dose that is required. If I have understood you correctly and you took pred for some weeks and the symptoms did not return within a very short time after stopping pred then I would doubt it was PMR (see the Quick and Kirwan paper and their "pred sandwich" on pp2&3) and would be inclined to suggest your doctor should consider inflammatory arthritis as opposed to PMR. RA and other arthritides often present with this roving, fleeting joint pain that appears and disappears, responding well to pred.
You have been reduced very quickly and this is not a good time of the year for anyone with autoimmune conditions/arthritis in general - your doctor is probably right about the temperatures and dampness here being a problem. I've dreaded the onset of winter for some years now!
As regards the blood tests and inflammation markers, they are hardly infallible. In all my years dealing with PMR/GCA and the aftermath of steroids I have never ever had raised inflammation markers even when quite obviously very ill (some 20% of patients don't have raised markers). I was 57 at diagnosis too but had had the symptoms for some years previous to that.
The one thing you could do would be to ask her to check your Vit D levels. Most of us are low in vit D at this time of the year (and the older you are the more depleted the levels can become). Low vit D can cause muscle pain very similar to PMR, so it's worth a shot.
Yes thankyou I believe she did say calcium and vit d low so prescribed Acdal D3 maybe that contributed to original muscle pain I presented with but I now seem to be left with more acute inflammatory flare ups - appreciate your advice
Yes, Celtic is right. if your vit D is low then the combined supplement isn't enough to raise it, just maintain it. And NEVER take extra of the combined supplement - you will overdose on calcium and that is dangerous. More vit D must be as a single supplement - you can buy it in the chemist or H&B if your GP is stuffy about it and up to 4000 IU/day for a couple of months during the winter is not a problem. Then ask for another vit D test because getting too high is also not good but it is in the region of 150 that is risky.
Sue, find our just how low your Vitamin D result was. If you are very deficient, then the Calcium + Vit D pill will not be sufficient to bring the levels up. You would need a course of high dose pure Vit D3 to increase the level to within normal range, and then it can be maintained with the usual Calcium + Vit D pill.
Thankyou I will ask about levels on my next visit - it will be interesting to see - I was shocked that it hadn't been checked at a physical review bloods etc I was invited to have beginning of the last year - thought calcium would be checked as a routine in that re osteoporosis age etc !
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