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DiscussionInclusion Body Myositis: I'd like to talk with others
Autoimmune Diseases | Last Active: Oct 20, 2023 | Replies (97)Comment receiving replies
Replies to "Hi Becky, Thank you for your ideas. If you don't mind, can you share what autoimmune..."
@kentyunker Thanks for your interest. I have a rare, and newly discovered, disease called CLIPPERS. It stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. I was SO lucky to find a neurologist who had heard of the disease because none of the local doctors had. With high dose steroids my brain came back, but I needed a month of rehabilitation. I now get twice yearly infusions of rituximab, a monoclonal antibody . It’s been a long road..... As a retired nurse, I’m now trying to help others