Fighting one for 4 years
Posted , 16 users are following.
I have been on pred. with very slow taper over and over again for 4 years. I have been on 2 1/2 mg every other day for mths. and pmr is back. My sed rate and crp have been going up every mt but are still not high enough for dr. to "believe" me. My sed rate was 28 and crp was 3.6. That may not sound very high given the fact that when I first saw dr. my sed rate was 114 and I was going crippled. Having trouble even turning over during the night. Shoulders, neck, and very sore upper arms. Hips, behind, and thighs stiff and sore. Went for blood work end of last wk and drs office says #'s have gone way down and are great although they cant give me info cause looking for papers. I know Im not imagining it and I dont baby myself. I am a super active 60 yr old. Don't know where to turn.
0 likes, 32 replies
Anhaga patti52108
Posted
For your information, alternate day dosing is specifically NOT recommended for PMR, although I can't find the reference right now it was in an article about dosing, and PMR was singled out as not being a good candidate for this kind of dosing although is can be helpful for other disorders.
Actually I think it was in a medscape article. Just google alternate day dosing for polymyalgia and it's partway down the page.
BettyE patti52108
Posted
If only more research was done into individual differences. The surgeon who did my hip replacement was" amazed" at my bone density and I couldn't take AA just calcium and Vit D for eight years of PMR and prednisolone. Why was I so lucky? I've lead what seems to me a very average sort of life. Why do I not have to worry about putting on weight? Why have I never needed more than five hours sleep? On the downside, why does my body resent drugs that are ok for many if not most? ( penicillin, paracetamol, alendronic acid and doubtless others that I've not encountered? ).
ptolemy BettyE
Posted
I am amazed your orthopaedic surgeon even checked your bone density, when I had my hip done my surgeon did not even know what PMR was. He just wanted me off steroids. We compromised at 5mg in the end.
BettyE ptolemy
Posted
An ideal time I'd have thought. Plenty of readily available material or perhaps a man really interested in his patients.
Norfolk and Norwich University hospital NHS six years ago. Would recommend unreservedly but that was then; don't know how they have weathered the ongoing cuts.
ptolemy BettyE
Posted
Sounds like a man really interested in his patients. Did you have a Dexascan to check your bone density?
BettyE ptolemy
Posted
If I did it must have been while I was still under sedation. I seem to remember mentioning th surgeon's remark some long time ago on here and another contributor saying it would have bee done as part of the surgery routine. I was never offered a DEXA at any other stage.
I think he must be a very serious minded man because when he said to me that I had done very well and I replied that I thought HE'D done very well I didn't get even a glimmer of a smile. I'd go to him again, though.
ptolemy BettyE
Posted
My surgeon was brilliant. It was the reason I chose him, but a dreadful bedside manner. Perhaps he found your bones tough to drill and that is why he said you had good bone density. Dexascan equipment would not be found in an operating theatre!