Has anyone tapered off Actemra?

Posted by psquicciarino @psquicciarino, 17 hours ago

Has anyone tapered off Actemra.
I started 1 injection once a week, now I started doing onr every other week.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

There isn't much information about how Actemra should be discontinued. The need to taper off Actemra has been "looked at" because abrupt discontinuation often causes a relapse within a year or two. I have abruptly stopped Actemra when there was a supply chain problem during Covid. There was no Actemra available for 6 months. My symptoms returned but symptom control was regained when Actemra was restarted.
https://www.sciencedirect.com/science/article/pii/S0049017224001483
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People in the UK are restricted to 1 year of Actemra and that isn't working out too well according to reports.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
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In some cases remission is sustained after Actemra is stopped when patients are switched to methotrexate. This was a trial with rheumatoid arthritis patients.
https://pubmed.ncbi.nlm.nih.gov/29853455/
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I'm not a good case study for how to discontinue Actemra. I have been on Actemra for more than 6 years. Actemra works great for me but my symptoms "gradually return" as I have tapered Actemra. I would not call it a sudden flare or a sudden relapse because my symptoms return gradually. My experience was similar to when my symptoms gradually disappeared in 3 months when I started Actemra only in reverse.

Stretching the injection time interval to longer than 4 weeks caused my symptoms to return.

Stretching my Actemra infusion time to more that 7 weeks also caused my symptoms to return.

Overall my infusion lasts longer which is probably why infusions are done every 4 weeks.

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I did not take Actemra but reading the data and Dadcue's literature, I would think stopping Actemra would be easier than those of us that were able to stop taking steroids alone. Are you still taking prednisone? If you have weaned off prednisone then stopping Actemra should depend on whether your PMR is still active. That will be a very individual occurrence. Like Dadcue your PMR may be a lifelong disease. I was fortunate. I was able to stop taking steroids in 6 months. I had two flares the first year but none in the last 3.

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I did not take Actemra but reading the data and Dadcue's literature, I would think stopping Actemra would be easier than those of us that were able to stop taking steroids alone. Are you still taking prednisone? If you have weaned off prednisone then stopping Actemra should depend on whether your PMR is still active. That will be a very individual occurrence. Like Dadcue your PMR may be a lifelong disease. I was fortunate. I was able to stop taking steroids in 6 months. I had two flares the first year but none in the last 3.

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Actemra is only approved in the US for GCA, but I know people with PMR get it prescribed occasionally. Relapsing with GCA is riskier than relapsing PMR, since GCA can cause vision loss, aneurysms, aorta dissection, etc. It's difficult to know if your GCA is still active or not, but I would rather not find out by having GCA return.

Google says "Some studies show relapse rates of 40–50% within 18 months of stopping treatment" regarding GCA.

I've been taking weekly injections for a year. I'm expecting to be taking them for at least a couple more years.

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I have been on Infusion for 1 yr. It has helped. Dont know when it will be stopped. Trina

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