← Return to Inclusion Body Myositis: I'd like to talk with others

Discussion
Comment receiving replies
@kentyunker

Hi Becky,
Thank you for your ideas. If you don't mind, can you share what autoimmune disease you are dealing with?

Jump to this post


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