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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
Hello @artist01, Welcome to Mayo Clinic Connect. It sounds like you have a very understanding doctor recognizing you are a very complex patient. The good thing, if there can be something good about GCA, is that you are definitely not alone. While I don't have GCA, I do have PMR which is currently in remission. It also sounds like you have a lot going on medically. I'm hoping you can connect with others here on Connect with similar symptoms and learn what they have shared. Here are some discussions that you might find helpful.
- What's your experience with Actemra for GCA?: https://connect.mayoclinic.org/discussion/gca-1/
- Worrying GCA development: Lost sight in one eye temporarily: https://connect.mayoclinic.org/discussion/gca-development/
- Medications for Temporal Arteritis/Giant Cell Arteritis (GCA): https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/
Are you still taking prednisone along with the Actemra?
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My White Cell Count and Neutrophils went down, but only after being on Prednisone as well as Clozapine, for a year and a half, so I was taken off both. By then, I'd also been on Actemra for a year. I'm still on Actemra only, but having to monitor blood work weekly or bi-weekly for low results in those two categories. If there's a drop, I have to pause the Actemra until my readings are again stable. I know, I'm a Piece of Work! My best wishes, Laurie