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What is the goal when tapering?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (23)Comment receiving replies
"Others in this forum seem to have had good success with it."
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Now that more people are reporting success with Actemra - I would like more people to share their personal experience with stopping Actemra. Does anyone have a "sustained remission" after stopping Actemra???
My rheumatologist wanted me to try Actemra 6 years ago. I was on another PMR forum at the time seeking information from anyone with personal experience with Actemra. There was a backlash from the patient "PMR experts" who claimed to be "entitled" to know things about PMR that no one truly knows. They were pro-prednisone and anti-Actemra for unexplained reasons. They didn't have any personal experience with Actemra and the research evidence that Actemra worked for many people was dismissed.
All I said was Actemra "seemed to be working" and I wanted to be off prednisone because of my many long term side effects from prednisone. In the short term, prednisone wasn't so bad for me. However, I didn't want to be on prednisone for the rest of my life.
I'm happy that Actemra works for some people as it did for me. I have been on Actemra for 6 years without any serious side effects. I tapered off prednisone within a year of starting Actemra. I exceeded my rheumatologist's expectations because he would have been happy if I could get down to 3 mg of prednisone. Considering I took moderately high doses of prednisone daily for 12 years ... Actemra has worked remarkably well for me.
The downside of Actemra has been my inability to stop Actemra. It was stopped once because of supply chain problems during Covid. I had a full-blown relapse and needed prednisone again. My longest period of time between infusions was 7 weeks when my symptoms started to return but I didn't need to restart prednisone that time. Overall, my quality of life for the last 4 years has been much better compared to my 12+ years on prednisone. However, I don't want to be on Actemra for the rest of my life either.
Replies to ""Others in this forum seem to have had good success with it." --------------------------- Now that more..."
I, too, am interested in knowing if people are successful in stopping their Actemra. Friends and family ask me how long I'll be getting infusions. All I can do is shrug my shoulders. Many of you had been on Prednisone for years, before taking Actemra. I started Prednisone in July 2024. I was very proactive in getting treatment for PMR/GCA, because I knew what I was feeling wasn't normal for me. When I had a flare during the holidays, I told my rheumatolgist to order the Actemra infusions for me. I'm hoping that my 'short' experience in taking Prednisone will help my long term recovery. As soon as I began taking Prednisone, I knew that I didn't want to take it forever. I haven't had an appointment with my rheumatologist since my first infusion. I plan to have a discussion with her about how long her PMR/GCA patients have been taking Actemra and if any of them were successful in stopping the medication, without having to resort to Prednisone.
I appreciate the insight that @dadcue, @jeff97, and others in this forum share about their experiences.
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You're asking a difficult question - how long do people with PMR and/or GCA need to take medication to control their disease and prevent relapse? I just googled "does PMR last forever for some people", and repeated the question for GCA, and the search indicated that long term or even life-long medication might be needed for some people. It said 2-5 mg of prednisone is a typical maintenance dose in those cases. I'm currently taking 5 mg per day (along with weekly Actemra injections), and the prednisone side effects at that dose seem very minimal. But I know there are still lots of potential problems from the prednisone even at low doses.