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Weaning off of prednisone & pain management

Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:23am | Replies (156)

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@dadcue

I couldn't tell for sure. I had to go with what my endocrinologist said -- my cortisol level was "adequate." However, my endocrinologist wouldn't say my cortisol level would be adequate every day after I stopped prednisone. I was told to restart prednisone for "any reason" if I felt the need. There was a need and I had to go back on 60 mg of prednisone. My first attempt to stop prednisone didn't go so well but a lot was learned. I learned to expect the unexpected!

My cortisol level isn't checked anymore. I'm told that cortisol levels are variable depending on the time of day and what happens during the day. There is no "normal cortisol level" for every situation. There was no guarantee my adrenal function would be adequate for every situation. It was only adequate on the day and at the time it was tested.

My overwhelming fatigue is not a problem anymore. I feel much better being off prednisone.

Prednisone replaces the cortisol our adrenals produce. Since I'm not on prednisone anymore --I have to assume my adrenals are working. A low cortisol level caused by adrenal suppression because of prednisone use won't improve until prednisone is reduced. Adrenal function improves gradually with time so don't expect to feel better as soon as prednisone is stopped.

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Addendum: The following excerpt are the words of a true expert on the subject. She told me the following:

"With more than 10 years of prednisone dosing under your belt, I would surmise that the possibility of prednisone tapering would be fraught with disappointment and failure. Each step down titration in dose is done with the purpose of lowering the blood serum level of circulating cortisol to an uncomfortable level (eliciting symptoms of low cortisol - nausea, severe muscle/joint pain, diarrhea, low blood pressure, low appetite, chills/sweats). Each step down titration in dose is meant to coax the Pituitary gland to “awaken” from its suppressed/retired state. The fact that you have been on prednisone for more than 10 years would be a negative prognosticator for a successful Pituitary reboot.

What does this mean?

Most likely, you will need to remain on a replacement level of corticosteroid (hydrocortisone is preferred) for life. You will need to take daily medication to provide for corticosteroid normally produced by the adrenal glands."
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How is it the pituitary gland is affected? You need to remember that Prednisone disrupts the entire HPA axis. The Hypothalamus-Pituitary-Adrenal axis.