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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/
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Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra when I was taking 50 mg per day of prednisone, and I'll be going to 10 mg / day in just a few days. I take weekly injections of Actemra. I don't know yet what my rheumatologist has planned for the final 10 mg. I'll find out in 3 weeks at my next appointment. So far the taper has gone well. I haven't had any symptoms of a flare.
That's interesting about your synovial cyst healing back up.
I just did a quick google about what Actemra does, and the AI response had this information:
"Actemra (tocilizumab) is a medication that specifically blocks interleukin-6 (IL-6) by acting as an IL-6 receptor antagonist, preventing IL-6 from activating the immune system and causing inflammation; essentially, it blocks IL-6 from connecting to cells in the body.
Key points about Actemra and IL-6:
Mechanism of action:
Actemra binds to the IL-6 receptor, preventing IL-6 from signaling to cells and triggering inflammatory responses.
Treatment applications:
Due to its ability to block IL-6, Actemra is used to treat conditions where excessive inflammation is driven by high levels of IL-6, such as rheumatoid arthritis, giant cell arteritis, and systemic juvenile idiopathic arthritis. "
In the PMRGCAuk support group, they frequently say that there are 3 primary types of inflamation that can affect PMR and GCA, and depending on each person's mix of these 3 types determines if they can get off prednisone by taking Actemra.