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I’m newly diagnosed with PMR and I am not taking well to Prednisone..
Polymyalgia Rheumatica (PMR) | Last Active: Jan 25 6:48pm | Replies (18)Comment receiving replies
@dadcue
My rheumatologist wanted me to start Actemra as soon as I was diagnosed, but it took about 6 weeks to get approval from the insurance company. For those 6 weeks I was taking 60 mg of prednisone per day.
Once I started the Actemra, it took almost exactly a year to get off of prednisone. That happened in mid August of 2025. I had some mild prednisone withdrawal issues in the month following when I stopped, but nothing too bad. Also I felt like my metabolism recovered completely after being off of it for a month. It took about 4 months for me to feel like the prednisone and its side effects were completely out of my system.
I've been taking weekly injections of Actemra for about a year and a half. Assuming things keep going ok, my rheumatologist plans to switch me to biweekly injections in 5 months, which will be the second anniversary of my diagnosis. If things keep going well, the plan is for me to stop Actemra after a year of biweekly injections. It would be nice if that works out, but biweekly injections wouldn't be too bad long term.
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@jeff97
My rheumatologist took a different approach when I started Actemra. I started with injections every 2 weeks. My rheumatologist said he wanted to "play it safe" but that was in 2019. My rheumatologist didn't think the research showed a significant difference between weekly Actemra injections and injections every 2 weeks.
I did well doing injections every 2 weeks and I got off prednisone within a year. Then the unthinkable happened within a couple of weeks. I needed 60 mg of Prednisone again. That was a huge setback.
Actemra was interrupted while a different biologic (Humira) was tried. I was able to taper back to 15 mg of Prednisone again but no lower. I was switched back to Actemra with weekly injections instead of every 2 weeks. I got off Prednisone easily the second time going from 15 mg to zero in a few weeks,
Fast forward to when I developed inflammation of a different kind when I was OFF Actemra. A synovial cyst formed on my lumbar spine which is usually caused by inflammation. I was being prepped for a lumbar fusion while I tested monthly infusions of Actemra. When it was time for surgery, it was discovered that the synovial cyst shrunk and was reabsorbed. The surgery was postponed indefinitely.
The neurosugeon said it was very rare for a large synovial cyst on my lumbar spine to be reabsorbed like it was.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11278635/.
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When my rheumatologist found out ... he told me to stay on monthly Actemra infusions. Since I tolerated Actemra infusions really well ... there was no need to switch back to Actemra injections.
My Actemra progression has been in the opposite direction as you. My rheumatologist wasn't concerned about playing it safe anymore. I was told to stay on monthly Actemra infusions. Furthermore, my rheumatologist said Actemra is better for me than Prednisone.