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@grownupcf
For what it’s worth, the rheumatologist who put me on Kevzara said not to taper for the first 90 days until the Kevzara was fully at work. Then he said to taper at the rate of 1 mg a week which seemed unusually aggressive, but it worked.I followed that advice. I am no longer on prednisone for which I’m grateful. I was advised to stay on Kevzara for a year before beginning to taper off it.

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Replies to "@grownupcf For what it’s worth, the rheumatologist who put me on Kevzara said not to taper..."

@cwbf

Perfect! ... That was exactly how I tapered off Prednisone. The only difference was that I started Actemra instead of Kevzara. Either one seems to work for people depending on if their diagnosis is PMR or GCA or both.

I took Prednisone for 12 years to treat PMR. I was never able to get under 10 mg of Prednisone for very long no matter how slowly I tapered. I was still able to taper off Prednisone.

When Actemra was started, I did a slow taper for the first 3 months. I also did the 1 mg per week taper from 7 mg to 3 mg. I had to stay on 3 mg for 6 months because of adrenal insufficiency and a low cortisol level. When my cortisol levels improved, an endocrinologist said there was no need for me to taper from 3 mg to zero as long as PMR was controlled. AND my cortisol level stayed in the normal range. I was too scared to stop Prednisone abruptly so I did a fast taper by going from 3 mg to zero in a week.

I wish I knew about IL-6 inhibitors when I was first diagnosed with PMR. Unfortunately the research wasn't completed and Actemra was only FDA approved for GCA in 2017.

Kevzara was FDA approved for PMR in 2023. I was diagnosed with PMR in 2008 so that would explain why IL-6 inhibitors and treating PMR/GCA with a biologic were never mentioned to me. I was told about IL-6 and Actemra in 2019. I was willing to try Actemrs without any guarantee it would work.

I received negative feedback at the time when Actemra was started in 2019 on another PMR forum. The resident expert on that forum said how dangerous Actemra was without having any personal experience with any biologic. The claim was that doctors in the USA were "breaking the rules" for treating PMR with Actemra.

I'm extremely happy that my rheumatologist broke the rules because now I have been Prednisone free for 6 years. I consider treating PMR/GCA with IL-6 inhibitors as a major breakthrough for my inability to taper off Prednisone after 12 years.