← Return to Adrenal Insufficiency and Tapering Prednisone

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@dadcue

How is anyone supposed to know when PMR "burns out" or "self limited itself? If PMR did that, it wasn't like an on/off switch. At least, I never knew if PMR self-limited itself or not.

I did something I called "peeking under the prednisone." I would lower my dose just to see what happened. I lowered my prednisone dose gradually to determine what my lowest effective dose was. Invariably something would happen. It was some kind of pain but it was never exactly the same as my original PMR symptoms.

I told my rheumatologist that I wasn't sure if I still had PMR or not. I felt miserable. Yes, there was some pain but not anything like the original shoulder pain when I couldn't lift my arms or get out of bed without help. The uncertainty about whether or not I still had PMR was at doses less than 10 mg.

After many years on prednisone, I suggested to my rheumatologist that she only prescribed prednisone to me because maybe she thought it was what I wanted. The suggestion was that I was stuck with taking 10 mg of prednisone every day and she was responsible for feeding it to me. My rheumatologist was very patient with me!

I wanted prednisone but probably not for PMR only. In my case, there were many reasons why I took prednisone. Pain was the overall reason but I don't think I took prednisone just for PMR pain, When I started to read more about adrenal insufficiency and how people become "dependent" on prednisone, I became more and more convinced I had adrenal sufficiency, However, I must have still had PMR because my rheumatologist said I still had PMR along with "other things." She called the other things widespread systemic inflammation.

My symptoms were probably caused by both PMR and adrenal insufficiency. Actemra was prescribed for the part that was PMR. That allowed me to taper quickly down to 3 mg of prednisone. At that dose, my adrenals needed to contribute some cortisol or I was going to be miserable for the rest of my life. If my adrenals weren't going to produce enough cortisol, I was going to have widespread systemic inflammation. I came to this conclusion after I learned how cortisol "regulates" inflammation along with many other things.
https://my.clevelandclinic.org/health/articles/22187-cortisol
"Suppressing inflammation: In short spurts, cortisol can boost your immunity by limiting inflammation. However, if you have consistently high levels of cortisol, your body can get used to having too much cortisol in your blood, which can lead to inflammation and a weakened immune system."

In my opinion, you can also substitute prednisone/prednisolone for the word cortisol in the above statement.

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Replies to "How is anyone supposed to know when PMR "burns out" or "self limited itself? If PMR..."

"How is anyone supposed to know when PMR "burns out" or "self limited itself?"
Don't ask me! I'm a fellow PMR traveller who had my first flare at 6/6.5mg two months ago. 6mg was a bit high for adrenal insufficiency so I held to the 6mg, hoping the aches would resolve with time. Slight post-reduction aches normally resolve for me within 2wks, but over the next 4-6wks the small aches gradually increased to 5-6/10 pain, so I gave up and let the doctor know I'd had a flare. Blood tests confirmed inflammation was high again.

The flare was really crushing and I felt I'd failed. Everything was done "right", the slow taper of 1mg every 6wks (half a mg every 3wks), high nutrient diet, no processed foods, low oxalate, low lectin & gluten free, high calcium & protein and a few essential supplements. And regular light activity outdoors. What could go wrong... Yet it did.

At least now I know my lowest effective dose is 7mg, and I should have gone back up to that when the aches didn't resolve in 2wks, rather than hanging on so the inflammation grew and set in. A doctor-ordered rise to 10mg for a week didn't help, so I was put back on 15mg for 5 days then down to 12.5mg. Eleven months of hard reduction work for nothing - back to the start dose again. I'm pretty browned off with everything right now, but at least the pain is gone again.