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After remission ... has anyone discontinued Actemra or Kevzara?

Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (28)
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@jeff97

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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ropnrose | @ropnrose | 5 days ago

Thanks for your reply. I'm glad that your taper is working and you are pain-free. When I got down to 10 mg. I started noticing some aches and pains, but I just pushed through them. Sounds like you were pain-free when you started Actemra. My current flare started in mid-December right before the holidays. I'm reluctant to continue my taper from 13.0 mg. pred. until my pain subsides. There were times during the past month, that I was in pain all day. Another bonus with taking the increased dosage of Prednisone is that in jacks up my blood sugar. Prior to PMR/GCA, I never had any blood sugar issues. I get daily headaches with the blood sugar spikes. I'll discuss my taper with my rheumatologist this coming week.

I will patiently wait to see how the infusions work for me. I am hopeful for the future that I will be on a low dose of Prednisone and be pain free.

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