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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (58)Comment receiving replies
@dadcue Actemra is listed in my chart at the rheumatologist's as a high risk drug. Liver damage, serious infections, and bowel perforations seem like good reasons to stop if possible. A person can try stopping and then restart if necessary.
Replies to "@dadcue Actemra is listed in my chart at the rheumatologist's as a high risk drug. Liver..."
@jeff97
Hi Jeff,
Yup, side effects listed understood. But ongoing monitoring to prevent/address. And perfectly reasonable to work with doc on stopping & restarting. Years ago, Steve Martin wrote an hilarious satirical piece on listed side effects. I believe them (side effects), but also with a grain of salt for good reasons.
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@jeff97
I have been off Actemra for 6 months when there was a supply shortage during Covid. That was a disaster because a synovial cyst formed on my lumbar spine. When Actemra was restarted the synovial cyst was reabsorbed. For a large synovial cyst to be spontaneously reabsorbed is extremely rare.
I asked artificial intelligence:
"Spontaneous reabsorption or resolution of a synovial cyst (specifically lumbar synovial cysts) is exceedingly rare, with only a few dozen cases documented in medical literature."