"Perhaps if we had tapered much more slowly at the beginning things would have gone better."
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I don't know but maybe I tapered too slowly. It took me more than 12 years to taper off prednisone. My rheumatologist said I tapered too quickly at the start of PMR. She recommended a "stable dose" for an "extended period of time" before trying to taper.
I never lowered my dose every month until I was less than 10 mg. It was more like staying within a certain range for a long time. I was in the 20-30 mg range for 5 years. After the first 5 years I was able to stay in the 10-20 mg range for another 5 years. It wasn't like I didn't try to taper ... I just needed to stay within a certain range.
I wasn't able to do less than 10 mg for another 2 years. That was when my rheumatologist convinced me to try Actemra. After that my taper was much faster:
1 mg per month for 3 months to 7 mg.
1 mg per week for 4 weeks to 3 mg.
I was instructed that I should NOT taper any lower than 3 mg because my cortisol level was too low when I was on 3 mg. I had to stay on 3 mg for 6 months until my cortisol level improved at which time an endocrinologist said I could simply stop taking Prednisone without tapering. I tapered anyway.
1 mg every 2 days to zero.
I have been off Prednisone for nearly 5 years but I still do a monthly infusion of Actemra. I still have some pain but I feel infinitely better being off prednisone. I don't need anything except for Actemra to control my pain ... not even ibuprofen.
I still see an endocrinologist who is helping me overcome my Prednisone side effects. My rheumatologist controls my Actemra dose.
Wow @dadcue that is such an awful long time to have to deal with this! My heart goes out to you as do my best wishes for a continuing and lasting recovery.