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Polymyalgia Rheumatica (PMR) | Last Active: 29 minutes ago | Replies (13)
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Potential for vision loss has always been my A-#1 concern with GCA!! I was tentatively diagnosed w/GCA (never w/PMR) in July 2025; biopsy confirmed Dx @ end of November. My Prednisone dose is currently 40mg...after what my Rheumatologist labeled a "relapse" after tapering to 30mg. My insurance finally approved Tyenne and I expect to begin self-injections in about a week.
momac59, you mention steroid injection, are you also taking daily Prednisone? Any chance of seeing a Neuro-Ophthalmologist? I am so lucky to have the most exceptional Neuro-Ophth on my "care team." She has been amazing and laser-focused on the health of my eyes...even more than my Rheumatologist!
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@ceedub I recently went off Tyenne because of side effects. Please log your problems so you have the most accurate information for your doctors should a significant problem arise. I was on Tyenne from mid-January until mid-March when I had a CT Scan that Dx diverticulitis so just know the problem may take weeks, months to materialize. Read up on the known side effects and start there, then add any other problems/concerns you notice. I was also having BP issues and my endo found my thyroid numbers were changing, another known side effect due to drug induced changes in your liver.
I was sad when I was taken off Tyenne because it was making me feel great. I felt better than I have felt in 7 years so I was very disappointed. We are now waiting for the Tyenne to get out of my system before we start the next drug in an effort to find a drug I can tolerate.