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Is progress being made in understanding PMR/GCA?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 22 2:50am | Replies (22)Comment receiving replies
@hopeinal That sounds miserable. I was always advised by my rheumatologists to go back up to the last Prednisone dose that kept me pain free if I had a flare while tapering. I tapered down from 60 mg/day to 0 mg/day over a period of 6 months, but was given plenty of leeway to alter the schedule and dosage as needed, based on the pain I was experiencing.
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Did anyone ever tell you that your taper was too fast?
Actemra made a mockery of slow Prednisone tapers. You were lucky not to be on Prednisone very long. Did you ever feel any symptoms that you would attribute to adrenal insufficiency?
My adrenals must have been resilient considering I took Prednisone for 12 years. My cortisol level was low once I reached 3 mg of Prednisone. I had to stay on 3 mg for 6 months waiting for my cortisol level to improve.
Once my cortisol level was adequate, my endocrinologist said there was no need to taper. From 3 mg, my endocrinologist said I could discontinue Prednisone but I should take Prednisone again if I "felt the need." I was worried about an adrenal crisis but that didn't happen. By that time, I was confident Actemra had PMR under control.
I was just annoyed that Actemra wasn't tried a lot sooner. My quality of life on Prednisone for 12 years wasn't very good.