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Unfortunately in my experience over the last 1 1/2 years with PMR there are many different directions to take. I started with my primary who detected the symptoms. He started me on 40 of prednisone. The pain went away within 4 days which was a huge relief. Then the side effects of the prednisone kicked in. After about 6 months of working with him it was time to see a Rheumatologist. It's soo important to find one you respect and trust and then communicate with them.
My labs showed elevated IL-6 , sed rates and CRP. We need to know and understand these tests. He has tapered me down to 5 mg prednisone. SLOWLY. Thank God. I was miserable on prednisone. Plus I lost about 50 percent of my hair. At the same time to protect me from going blind with GCA he started me on Actemera. I haven't really had side effects except I've struggled a lot with incredible fatigue. Which may have been the prednisone. All this to say, we're doing the best we can with a lot of grey areas that take patience. The challenge for me is to continue to educate myself as best I can, work with my doctor. Try to stay positive, as much as I can do the things. I love. Don't overdo, trust God. Stay in touch with friends. Going to spend some time in the sun this winter. Remember you'll get 50 different opinions for each of your questions, don't stop asking but come back to those you trust the most. Hopefully a spouse , doctor, close friends.

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Replies to "Unfortunately in my experience over the last 1 1/2 years with PMR there are many different..."

The fatigue is likely caused by the delay of the adrenal glands to start producing cortisol after long term prednisone use. This condition is called prednisone induced secondary adrenal insufficiency.

"Secondary adrenal insufficiency is most commonly caused by medications, such as prednisone, intra-articular injections with steroids, or steroid creams. In this situation, the adrenal glands may take days to months to recover function and restore proper cortisol production."
The fatigue caused by adrenal insufficiency is INCREDIBLE!

Don't confuse adrenal insufficiency with adrenal fatigue.
Adrenal insufficiency may explain the hair loss too.

I had a fantastic response to Actemra after 12 years of prednisone use. My fatigue has infinitely improved but I am slower than I used to be. My hair is still thin but I'm older than I used to be too.

Factoring in the additional years -- I think I'm back to normal except for doing monthly IV Actemra infusions instead of daily oral prednisone.

I'm not sure how or when I will stop doing the monthly Actemra infusions. After four years of Actemra, it doesn't seem to cause me any problems.

I hope you will feel the benefits soon too. Hopefully Actemra
won't create any new problems for you.

I never did have my IL-6 level checked. Maybe my rheumatologist made an educated guess.