← Return to Precursor symptoms to PMR?
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Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (92)
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Replies to "Before I started treatment for GCA (prednisone and Actemra), I always had major side effects from..."
Has Actemra helped you taper off Prednisone? Getting off Prednisone after Actemra was started has made a world of difference for me. At least my adrenals aren't suppressed any longer. I think having normal cortisol levels to regulate inflammation has been beneficial. I don't really know what Actemra is doing but it doesn't seem to cause me any harm.
My inflammation markers increase whenever I go too long between Actemra infusions. I was off Actemra during the Covid era when there were supply chain problems. I have severe spinal stenosis and a synovial cyst formed on my lumbar spine and surgery was being planned. A lumbar fusion was "pending" until the synovial cyst formed. The surgeon said the synovial cyst was taking up the limited space I have left in my spinal canal and space for the exiting nerve roots, I resorted to Prednisone again for the pain until Actemra supplies improved.
The spine surgeon said surgery couldn't wait any longer and pain wasn't the issue anymore implying that paralysis might be next. I agreed to surgery but I wanted to wait a few more months. In the interim, Actemra was restarted when supplies improved. When it was time to do the preparations for surgery, another MRI was done. The MRI result was surprising because the synovial cyst was gone. Synovial cysts form in the presence of inflammation but sometimes are reabsorbed. The surgeon said surgery was still needed but I could wait awhile longer. The surgeon speculated that Actemra might have stopped the inflammation around my lumbar spine and the synovial cyst was reabsorbed.
I don't know how often reabsorption of synovial cysts on the lumbar spine happens but the following link says it is rare.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8149034/