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What's your experience with Actemra (tocilizumab) for GCA?
Polymyalgia Rheumatica (PMR) | Last Active: Dec 17, 2025 | Replies (40)Comment receiving replies
Your comments are giving me hope that I will eventually be able to travel within the monthly Actemra infusions.
It sounds like you can wait longer between infusions.
I have had three Actemra infusions. I have dropped to 7 1/2 mg of Prednisone.
My rheumatologist has me drop down every two weeks.
As a Highly Sensitive Person (HSP), I can feel the internal swelling, and what I call the "marauder"- actually my own body attacking itself (IL-6, I guess).
My excellent doctor realized something was a miss and ordered a CT Scan with Contrast for head and neck. I have a congenital defect on the left side with some underdeveloped parts - fortunately no stenosis BUT a narrowed artery and part of brain- so slower blood circulation. I just got results and he hasn't given me his diagnosis, so to speak...
Thank you for sharing your experiences. I had a severe case of PMR. After that year and half and feeling excited to be healthy, I was grief-stricken to learn I have GCA. My friend labels these as my "alphabet disease..."
I definitely "enjoy" each day knowing I will get better with the biologic.
Helene
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@kathren
I'm somewhat sensitive to pain as well. It is easier to deal with pain when you know why it happens. I have trigeminal neuralgia which caused facial electricity that felt like electrocution. Trigeminal neuralgia was called the "suicide disease" when they didn't know the cause or how to treat it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12438733/
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My trigeminal neuralgia was a congenital defect at the base of my brain. A neurosurgeon stopped the electricity but I still have facial "discomfort"
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
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I won't go into details because I cry when I think about it. When I asked the neurosurgeon why it happened he referred me to God. Fortunately my pain was reduced substantially.
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I also have severe spinal stenosis in the lumbar area of my spine. A neurologist says the pain signals throughout my body are "scrambled" so my brain doesn't know how to interpret the pain signals. In my case ... I can't listen to my body.
The pain is real but my brain doesn't interpret the pain correctly. When a small breeze or simple touch on my face generates mega jolts of electricity there is a major malfunction. The body can radiate pain to places where no problem exists. It depends on how our bodies are wired with nerves and how the signals get transmitted to the brain.