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What is the goal when tapering?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (23)Comment receiving replies
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.
Replies to "I, too, am interested in knowing if people are successful in stopping their Actemra. Friends and..."
For now, I am happy to know that Actemra can be easily stopped. Prednisone can't be stopped abruptly but Actemra can. During Covid, I was notified that existing supplies of Actemra were being diverted to seriously ill Covid patients. Those Covid patients had their life on the line so I had no problem with stopping Actemra.
PMR/GCA relapses do occur when Actemra is stopped. It hasn't been determined what the "best way" to stop Actemra is but it can be stopped abruptly. The available research seems to favor tapering off Actemra.
https://www.sciencedirect.com/science/article/pii/S0049017224001483
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I need to add something to my comment that "I had a full-blown relapse and needed prednisone again." I was only off Actemra for about 6 months. I only needed prednisone again for 3-4 months until supplies of Actemra improved. After Actemra was restarted, I went from 20 mg to zero again in less than 2 months.
In the USA, restarting Actemra is done when a relapse happens. However, some people are able to stay off Actemra. In most cases, remission is quickly achieved again when Actemra is restarted. It isn't like Actemra fails but people need to continue with their treatment.
We can thank the citizens of England for real world information about what happens when Actemra is stopped. They are only allowed one year on Actemra and when their year is up ... Actemra is stopped and not restarted.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
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I have to smile because one of the authors of this study dismissed me. I still feel bad for all the people of England because it was only a couple of people who said my experience with Actemra wasn't pertinent. Mostly it was about me being treated with Actemra for "just PMR." I was reporting in 2020 what they have recently learned in 2024.
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Thanks @ropnrose for your kind words. I have learned a lot from the people on this forum.
I was fortunate that my rheumatologist encouraged me from the start to take Actemra.
I haven't actually thought that much about getting off of Actemra. I assumed at some point, probably around 2 years, that I would taper down and stop needing it. But I have no idea if that's a realistic assumption. I'm seeing my rheumatologist tomorrow. I'll ask what he thinks is most likely.