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Testing for Cortisol levels during taper of prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Mar 8 7:24pm | Replies (33)Comment receiving replies
This is timely for me. I had tapered to 1.5 mg and feeling poorly. I have been on prednisone since 2022 and wanted to get to zero this year. I decided to get an 8am cortisol test on my own instead of going through my big HMO. I did not have prednisone for 24 hours.
The test value came back at < 0.1 which means I was producing zero cortisol! I did take the results to the rheumy and she said go back to 5mg and get your PCP to refer to an endo. My PCP wrote the endo group who said they do not look at adrenal insufficiency until I have been off prednisone for a month. SO! I am back to managing this myself. I am at 3mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery.
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"I am at 3 mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery."
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Just so you know ... I stayed on 3 mg of Prednisone for 6 months waiting for my cortisol level to improve. After 6 months my endocrinolgist said my cortisol level was "adequate" on the day it was tested. She wouldn't guarantee my cortisol level would stay adequate after I stopped taking Prednisone because the amount of cortisol I needed would vary from day to day.
The surprising thing to me was that 3 mg of Prednisone was considered to be a very low dose and there was no need to taper from 3 mg to zero. Apparently I could just discontinue Prednisone since my cortisol level was adequate as long as I didn't need Prednisone to control my symptoms of PMR.
My endocrinologist said I would begin to feel better after I stopped Prednisone. She gave me permission to restart Prednisone for "any reason if I felt the need." Her only request was that I call her first before restarting Prednisone. She said the best way for my cortisol level to continue to improve was to stay off Prednisone.