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Tapering off of Prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Feb 28 5:49am | Replies (313)

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@papas

I began my journey 9/24/21 with 40mg Prednisone fast forward to 11/1/22 @ 3mg AM 1mg PM and the onset of neck/shoulder pain, Thundering heart beat in the AM and minor balance issue. Received the follow from my Rummy

There are 3 concerns when tapering prednisone to doses lower than 5mg/day:
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).

We did a complete blood tests including CRP, ESR and a morning Cortisol test.
Fortunately all test indicated normal ranges and most likely my symptoms are Prednisone Withdrawal related. This was my introduction into the complication of “withdrawal”. After searching the WEB and reading a lot. My conclusion: it is often very difficult to distinguish what is happening in your body when withdrawal symptoms often mimic PMR and Prednisone side effects. After blood test and further discussion with Rummy and a 2 week “stabilizing “ 4mg PM Prednisone - This Sunday 12/18/22 I will be continuing my taper using the plan you mentioned.

— Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan
Thank you all who contribute to our journey.

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Replies to "I began my journey 9/24/21 with 40mg Prednisone fast forward to 11/1/22 @ 3mg AM 1mg..."

My problem turned out to be #3 adrenal insufficiency which can only be established when you can maintain a prednisone dose of approximately 3 mg. Symptoms of adrenal insufficiency seem to surface when you get to about 7 mg of prednisone and gradually get worse. The symptoms mimic PMR so I thought I was having a flare anytime I got under 10 mg of prednisone.

Just for clarity, prednisone replaces the cortisol that your body needs. A low cortisol level has widespread symptoms including muscle and joint pain. Extreme fatigue was what I noticed the most. I was used to having muscle and joint pain and I thought it was PMR. In a sense, it was PMR because cortisol regulates inflammation. When my cortisol level got low as I decreased my prednisone dose, my inflammation level increased so it was called a "flare."

The following link describes what cortisol does. Cortisol regulates many things. Prednisone is not a good substitute for cortisol.
https://my.clevelandclinic.org/health/articles/22187-cortisol