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After remission ... has anyone discontinued Actemra or Kevzara?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (28)Comment receiving replies
I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of prednisone. My taper got me down to 8 mg. the first of December. Pain returned and progressively got worse by mid-December. The beginning of January 2025, I increased my prednisone to 13 mg. I had my first Actemra infusion this week (Jan. 22). Other than a mild headache for a couple of days after, it went well. Two days after the infusion I woke up with the least amount of pain that I had experienced in 2 months. I let my rheumatologist know how I was doing and she said that I could start tapering down again. I was going to start my taper today, but awoke with a little more joint aches. I am going to hold off on beginning my taper, until I can discuss again with my rheumatologist. I am curious how others have managed/began their prednisone tapers after starting Actemra. Did you wait until you were completely pain-free before you began the taper? This is a great group with a lot of experience with PMR/GCA. I appreciate your insight and comments.
Replies to "I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of..."
I was diagnosed with GCA in late June 2024. I had undiagnosed PMR for about a year before that. Like you I started on 60 mg prednisone, and stayed there for 6 weeks. I've been completely pain free since I first started taking prednisone. I started injecting with Actemra weekly around the first of September. I think I was at 50 or 55 mg prednisone then. I'm at 10 mg pred now, and in a week I will start tapering 1 mg every 2 weeks until I get down to 5. I'm feeling a lot better as the prednisone dose comes down, especially when it got to 10.
I've read that it can take up to 2 months to really feel the benefit of Actemra. One website I just checked said it can take up to 14 weeks to reach a consistent level in your body.
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Actemra works well for PMR/GCA. What it doesn’t help with is adrenal insufficiency. My cortisol level was checked at about 3 mg of prednisone. My cortisol level was low so I needed to stay on 3 mg of prednisone for about 6 months. After 6 months I was told that I could safely discontinue prednisone after my cortisol level improved.
It is hard to distinguish the aches and pains caused by adrenal insufficiency and prednisone withdrawal from PMR. Much of this depends on how long you have taken prednisone.
I think Actemra indirectly helps adrenal insufficiency because I don’t think I would have ever stayed on 3 mg without Actemra.