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PMR - Decreased prednisone and pain returned

Polymyalgia Rheumatica (PMR) | Last Active: May 28 1:36pm | Replies (157)
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@tuckerp

I also saw and NIH study of 25 patients they attempted to take off long term steroid use. None of the 25 were able to wean completely. I would have to find that one also. So the cortisol production is a very real issue. No one is crazy thinking they are weak and just cant do it. It also increases the pain which then increases the inflammation and restarts the whole process. So cortisol deficiency is real and PMR is real. I see everyone get to 5-7 mg and say they have a flare and had to go back. Its a never ending story.

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DadCue | @dadcue | May 25 2:01pm

My rheumatologist did a bit of a test before starting Actemra. I was asked to taper my Prednisone dose as low as possible. I was okay on 10 mg at the time but that dose was achieved only after 12 years of PMR. I could decrease to 7 mg before I was forced to retreat back to 10 mg.

After Actemra was initiated, I blew past that 7 mg dose and suddenly found myself on 3 mg. I tapered by 1 mg per week after blowing past 7 mg until I reached 3 mg.

I had overwhelming fatigue and pain but nothing resembling PMR symptoms. That was when my cortisol level was checked. My rheumatologist ordered me not to taper any lower than 3 mg and referred me to the endocrinologist.

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