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I've just started Actemra infusions - had 2 so far. I'm tapering prednisone and down to 4 mg. I thought I would feel better but I really do not. Still tired, weak, have the shoulder and arm and hip pain. I'm continuing to taper even though I don't feel better, hoping the Actemra will kick in and do something. Did y'all feel an immediate improvement when you started infusions?
Replies to "I've just started Actemra infusions - had 2 so far. I'm tapering prednisone and down to..."
I didn't start feeling any improvement until after my second infusion. That's when my energy levels came back. I have read that it can take quite some time for some individuals, to feel the results. I'm finding that I can taper my prednisone, without a flare up. I started my infusions in mid-January 2025 and I was taking 15 mg. Today, I am at 5 mg. As I mentioned, I still have some wrist aches and occasional, brief headaches. I have 3 good weeks a month. A few days before the infusion appt., my pain and tiredness increases. A few days after, I'm tired. I get a lot done in those three weeks!
Hi LinaXYL,
Just had to reach out to say that I have had about the same response as you to Actemra. I started monthly infusions in December 2024 but had to switch to weekly injections because my veins couldn’t handle the infusions. I have done well on injections but still have not seen dramatic improvement with my PMR symptoms. I still think that Actemra has been worthwhile because I have been able to successfully taper Prednisone without increasing my Sed rate and CRP. That was an ongoing problem before we added Actemra. I am now at 10 mg Prednisone and my inflammatory markers are finally normal. Previously I could only taper Prednisone .5 mg at a time and was stuck at 17 mg for 6 months. I pray that my PMR symptoms will improve more dramatically but I am thankful that it is allowing me to taper Prednisone. Prayers that we both see dramatic improvements in our PMR symptoms in the future! ❤️
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I didn't start to feel that much better until I was completely off prednisone. I had to keep telling myself that Actemra was working and I didn't need Prednisone anymore. Actemra takes a while to work and doesn't kick in like prednisone. My improvement was gradual and it took me a year to get off Prednisone after Actemra was started.
Actemra must work because I haven't needed any Prednisone in more than 4 years. Considering I took Prednisone for 12 years to treat PMR ... Actemra is amazing and I never want to go back to Prednisone. I still have some pain but PMR is well controlled. I have other rheumatology problems but PMR isn't a problem as long as I do my monthly Actemra infusion.
Except for some mild side effects, I haven't had any side effects from Actemra.