*below, not before

I didn't have any taper schedule when I started Actemra. It mostly depended on how I felt. It was complicated and it took me about a year but I eventually tapered off Prednisone.

My only instruction from my rheumatologist was "try" to taper off prednisone. However, if I could only get down to 3 mg, that would be good enough.

From 10 mg, I tapered by 1 mg per month for the first 3 months down to 7 mg. I didn't feel different other than I didn't feel any worse on 7 mg. I didn't realize that not feeling any worse was different.

I received some negative comments about Actemra that weren't supportive of taking Actemra for PMR. I was discouraged because I wanted Actemra to work. People said that I should simply stay on Prednisone for the rest of my life if I needed to.

When I was on 7 mg of Prednisone, I decided to get the "inevitable flare" over with. I tapered by 1 mg per week expecting to have a flare. Nothing happened although I got very nervous when I was at 3 mg. That was when I reported to my doctor that I was on 3 mg. I wanted to know what I should do next.

My doctor was surprised that I was on 3 mg so soon. The only noteworthy thing about my symptoms was how tired I felt on 3 mg. My doctor wanted to check a cortisol level before I tapered any lower. The result of my first a.m. cortisol level was low. I was told to stay on 3 mg until I could be seen by an endocrinologist. I wasn't seen by an endocrinologist until 6 months later.

I didn't exactly stay on 3 mg on for 6 months. I did several things with my Prednisone dose. I skipped days once in a while. I also did "countdown tapers" during some weeks, I did 3 mg -2 mg -1 mg - zero before going back to 3 mg again. By the time I saw an endocrinolgist, I was pretty sure PMR was well controlled. For the most part, I was on 3 mg of Prednisone for 6 months with the exception of the skipped doses and countdown tapers. Nobody instructed me to do that and I supposed to stay on 3 mg.

The endocrinologist was very interested in my "skipped doses" and "countdown tapers.' She asked me if I needed Prednisone for PMR. I said that I didn't think so. Before stopping Prednisone another cortisol level was rechecked. My second cortisol level was described as "on the low side but adequate."

What surprised me the most, was when the endocrinologist said 3 mg was such a low dose, I could simply stop Prednisone and no taper was needed. Since my cortisol level was adequate and PMR was well controlled, I was told to try stopping Prednisone. The only stipulation was that I needed to let the endocrinologist know if "anything happened."

Something happened when I stopped prednisone the first time. I ended up on 60 mg of Prednisone again. It wasn't anything catastrophic. I had a flare of a different autoimmune condition that wasn't PMR ... it was something else entirely. I had a massive flare of panuveitis which wasn't anything new except those flares stopped during the time I was taking Prednisone daily so the last flare of uveitis was 12 years prior.
https://my.clevelandclinic.org/health/diseases/panuveitis
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Part 2
An endocriologist, a rheumatologist and opthalmologist all were involved after the flare of uveitis. Actemra was stopped and a different biologic was tried. The flare of uveitis went into remission but I was stuck on 15 mg of Prednisone again along the other biologic called Humira. That combination didn't seem to work well for PMR because those symptoms returned

When I said that I wanted to try Actemra again because it worked the best for PMR -- my rheumatologist agreed to restart Actemra. The second time I tapered off Prednisone while on Actemra ... I went from 15 mg to zero in less than 2 months. No fancy taper schedule was needed the second time I tapered off prednisone. I did a fast taper from 15 mg to zero in less than 2 months. My cortisol level was checked one more time before tapering of Prednisone completely and it was still adequate.

My opthalmologist didn't think Actemra would prevent flares of uveitis. My Actemra infusion dose has been adjusted a few times but so far I haven't had flares of anything for about 5 years. I still do monthly infusions of Actemra.