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Feelings when tapering: My journey

Polymyalgia Rheumatica (PMR) | Last Active: Nov 13 10:21am | Replies (57)

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@papas

I agree with John keeping a log was very helpful when I recently had to deal with an apparent GCA attack that reduced sight in my left eye. I was put on 48 mg/ day Methyprednisolone. Reviewing my past PMR tapering history was very helpful in discussions with my rheumatologist as we setup a tapering protocol as I continued GCA/PMR journey. Prior to this, I had tapered to 1mg prednisone every other day. I was diagnosed with PMR 9/2021 my log and information from this site along with a great rheumatologist who listens has kept me steady on this journey. Always pay attention to what your body is telling you. While tapering my rheumatologist gave me these points to keep in mind as symptoms may occur and are similar for each:
1. Recurrence of the inflammatory disease (PMR).
2. Steroid withdrawal symptoms (which should be self limited and improve if given enough time, though it may take very slow prednisone tapering).
3. Adrenal insufficiency (because the dose of prednisone is lower than what your body needs to support electrolyte and fluid management).
Good luck on your journey

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Replies to "I agree with John keeping a log was very helpful when I recently had to deal..."

This is all good information to know. In regards to adrenal insufficiency the following information about cortisol might be useful.

"Your body continuously monitors your cortisol levels to maintain steady levels (homeostasis). Higher-than-normal or lower-than-normal cortisol levels can be harmful to your health."
https://my.clevelandclinic.org/health/articles/22187-cortisol
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Prednisone replaces the cortisol the body naturally produces. As you can see cortisol regulates many things in addition to electrolyte and fluid management.

There is no way a daily dose of Prednisone is going to duplicate what cortisol and the HPA axis does. The HPA axis is a complex mechanism that the body has to regulate cortisol levels along with regulating inflammation. The entire system manages many bodily functions which directly impacts how we feel.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis