Just looking for help and suggestions on prednisone withdrawals,

@gmdb
"...not a single doctor I have seen has mentioned it."
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I'm not surprised because that would raise a red flag about taking prednisone. I think doctors like to bask in the glory of prescribing prednisone. Their patients are so happy for the immediate pain relief that doctors fail to mention the consequences of long term prednisone use.

When doctors tell their patients to taper off prednisone quickly they get negative feedback. Patients can't taper off very easily unless they reduce their dose very slowly. The doctors who "understand PMR" tell us to increase our dose if the pain returns. The doctors who want us off prednisone are denigrated. My doctor was in the middle because she always said, " We (working together) have to find a way to get me off prednisone."

I think some studies should be done to determine why PMR patients have to take prednisone for years. I suspect it isn't all because of PMR. Tapering too quickly can cause symptoms that feel like a return of PMR (a "flare"), but it can also be withdrawal symptoms or both.

I figured out that my difficulty with tapering off prednisone was a combination of PMR relapses AND secondary adrenal insufficiency. However, I didn't understand that until 10 years after I was diagnosed with PMR. After my first PMR relapse, I should have started wearing a medical alert bracelet. That was when I reported a "pain crisis" instead of a PMR flare because my shoulders didn't hurt like they did when PMR was first diagnosed,

The solution for me was relatively simple ... I started a biologic which didn't suppress my adrenal function. I probably could have stopped taking prednisone in 3 months except I needed to wait more than a year for my cortisol level to improve.

I'm amazed that my rheumatologist isn't in any hurry to stop the biologic. I have been on a biologic for 7 years and off prednisone for 5 years. After my first year on prednisone to treat PMR, my rheumatology visits were almost exclusively about how much prednisone I was taking and the need for me to taper off.

I know PMR can't be cured. I no longer think the best treatment is to "take prednisone and wait for PMR to burn itself out."

@dadcue your case is a good example of how effective the biologics can be. Unfortunately, none of these are available for PMR in Australia.

I read a research paper last year that proposed PMR patients could be divided into 3 groups based on baseline studies of their CRP and IL-6. If both were high it was suggested you'd need pred over a longer period. If both were on the lower side (but still elevated) then you'd likely be a short- term case. And then a range ofvsriations between these two. I think in most places IL-6 testing is rarely done.