@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.
@dadcue Super helpful. I find this journey to be a weird one. With many people on the outside looking at me like I was a freak for considering Kevzara (that was after they kept referring to what I have as arthritis or as noted in my first post, just a reality of getting old 🤬). That it seems like overkill (for lack of a better word). Yet it seems like many of these same people have no issue with GLp1s.
And @cwbf Thanks for the 90 day note. I was hoping this would kick in sooner.