"I still do not personally know anyone who like me has pmr, in 7 years."
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@pmrsuzie I really believe a multidisciplinary approach is needed for complicated autoimmune cases like yours.

I don't know what I would have done if Actemra didn't allow me to taper off prednisone. Part of the reason my rheumatologist wanted me to try Actemra was because he didn't feel that taking prednisone for the rest of my life was good for me.

I personally didn't think Actemra would work when I first started doing Actemra injections. The people who promoted the dead slow method of tapering were against Actemra even though they had no personal experience with Actemra. They emphasized the "serious side effects" from Actemra and downplayed the "manageable side effects" from prednisone. They actually questioned how knowledgeable my doctors were. They said doctors in the USA were breaking the rules for treating PMR patients with Actemra. These comments only came from one or two "self proclaimed PMR experts." They said I was being disrespectful when I disagreed with them about low dose Prednisone for the rest of my life.

I mentioned all the negative feedback about Actemra to my rheumatologist because I was almost ready to back out of my commitment to try Actemra. My rheumatologist couldn't guarantee Actemra would work but he felt it was my "best chance" of ever getting off prednisone. He said I wouldn't know if Actemra would work or not unless I tried it.

I decided to go ahead and try Actemra but I wasn't optimistic it would work. Part of the reason I tapered by 1 mg per week from 7 mg to 3 mg was to get the inevitable flare over with.

I was in a hurry to get off prednisone when I needed to stay on 3 mg for 6 months when my cortisol level was low, I did some trials with going back and forth between 3 mg and zero but I would quickly go back to 3 mg again. I was mostly compliant with what my doctors told me. I was their "test case" but they reinforced the idea that Actemra "should work."

Imagine how I felt after I got off prednisone the first time. I had a flare of uveitis and my ophthalmologist restarted 60 mg of prednisone while Actemra was stopped. Uveitis is mostly associated with spondyloarthritis and not PMR. My ophthalmologist said Actemra wasn't optimal treatment for uveitis..

My rheumatologist, ophthalmologist and endocrinologist all collaborated to decide what to do next.

After trying Humira for 3 months I was given some options. I was on Humira and 15 mg of Prednisone and that wasn't acceptable to me. Humira is a TNF inhibitor and it wasn't working for me. TNF inhibitors aren't recommended to treat PMR but they are commonly used for spondyloarthritis and uveitis.

I decided to go back on Actemra hoping to get completely off Prednisone again. After Actemra was restarted, I went from 15 mg to zero in about six weeks. I have to conclude my problem was with IL-6.

I also concluded that cortisol levels play a role in being unable to taper off Prednisone even though the PMR experts said my cortisol level had nothing to do with it. That was contrary to what my endocrinologist said about 3 mg. It was such a low dose of Prednisone there was no need to taper as long as my cortisol level remained at an adequate level.

Yes, some people who take Actemra have to keep talking prednisone. Actemra inhibits IL-6, but there are other substances that cause the inflammation from PMR and GCA, such as IL-17. The person's mix of the inflammatory substances determines if they have to keep taking prednisone.