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PMR - Decreased prednisone and pain returned
Polymyalgia Rheumatica (PMR) | Last Active: May 28 1:36pm | Replies (157)Comment receiving replies
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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Your an asset to the PMR community in my opinion. I stay on these sites since as a caregiver I have time. I deal with the ravages of steroids every day watching my wife deteriorate. Her face is swollen, neck swollen, her skin is like a Georgia peach, 0steoprosis, who knows what else. She is on 1.5mg dex for the last 2 years and thats what has happened. I stopped 2 years ago. But in the last year I had 2 flare issues. Knowing what PMR symptoms were this time around I did a 5 day dose of dex starting at 4mg day 2 - 3mg day 3 and 4 - 2mg and day 5 -1mg. then stopped. No pain. PMR was gone. I used the thought it takes a week to stop cortisol production. They also prescribe 5 day packs for allergies and various other conditions. I am in the experimental stage so not sure if the PMR pain was still active what I would have done next. Gone to a stronger first day dose? Dex is about 5 times stronger than prednisone . so 4mg would be 20mg prednisone.