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← Return to PMR Taper and pain
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I discussed tapering at length with my doctor and did plenty of online research. What I discovered is a lot of the tapering exercise is about getting you adrenal glands to kick back in as well as concern over your PMR returning. Somehow I believe these are co-related but I have no basis for this opinion. My research told me that the problems with the reactivation of the adrenal glands seem to rear up around the 4-6mg of steroid range. Once I hit the 4mg per day range I started shortening my time on a single dosage and I also went down slowly between dosages. I moved from 4 to 3 by doing 3.5mg/day for 4 days, then did 3mg for only 17 days. I continued to reduce the time at each dosage level by 2-4 day. This reduced my tapering time significantly. My Rheumy permitted me to define my own schedule but I had to commit to returning to 5mg and contacting her as soon as any pain returned.
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The doctor in the video mentions prednisone effects on the HPA axis.
I'm convinced that reactivation of my adrenals was most of what prevented me from tapering off prednisone. The whole reason for tapering prednisone slowly is because of adrenal insufficiency from "long term" prednisone use.
I took prednisone for 13 years for PMR which isn't supposed to last that long. Even I had to admit my symptoms weren't the same symptoms when I was originally diagnosed with PMR.
I hope your way of tapering works. I was seen by an endocrinologist because of a low cortisol level when I reached 3 mg. The endocrinologist said I shouldn't taper any lower until my cortisol level improved. I stayed on 3 mg for 6 months until the endocrinologist said my cortisol level was "adequate." Only then did my endocrinologist think that "it might be safe" to discontinue prednisone --- no tapering was necessary according to the endocrinologist.
Perhaps I was overly cautious but I was reluctant to just stop prednisone abruptly even at the low dose of 3 mg. I did a relatively fast taper from 3 mg to zero over a couple of weeks I only went to zero when my endocrinologist reassured me that I could restart prednisone again "for any reason if I felt the need." None of this would have happened except for being on a biologic for PMR.
My endocrinologist just wanted to be part of the decision making along with my rheumatologist if I decided to take prednisone again.
I needed prednisone again when an ophthalmologist put me back on 60 mg within a week of tapering off. The reason wasn't because of PMR or GCA though. A different autoimmune problem flared up.
My ophthalmologist had no intention of keeping me on prednisone "long term." My ophthalmologist, rheumatologist and endocrinologist all agreed that a biologic would be "optimal treatment" for all my autoimmune conditions.
When the right biologic was determined I quickly tapered off prednisone again because I wasn't on prednisone long enough to affect my cortisol level. I tapered off prednisone again --- going from 60 mg to zero in a couple of months.
I have been off prednisone for nearly 3 years but I'm still on a biologic.