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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: May 9 9:40am | Replies (169)Comment receiving replies
@liztbnr, it can be so hard to advocate for your care and find a doctor who will work with you. You're alone in all this despite have the support of your husband and family. You don't want to be a burden. I get that.
I agree with @becsbuddy that the article she shared is excellent:
- Effective treatment of CLIPPERS with long-term use of rituximab https://nn.neurology.org/content/5/3/e448
Becky, I know that, like Liz, you had a long road before getting treatment that helped. Did you bring articles like this one to your doctor to help advocate for your care?
Liz, might sharing this article with your doctor open a new discussion about treatment options besides prednisone?
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No discussion with present medical bobblehead, as she hates this mysterious disease so she is distant. I will most likely have to find another practitioner in resolving this issue. I have a rare disease source that I will call in MD. Someone else with CLIPPERS
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@colleenyoung @liztbnr Yes, I took the articles with me to the doctors and told them that I wanted to try rituximab. I kept pushing and then when I had a downturn, they agreed and i got 2 doses of rituximab. Make an appointment with your rheumatologist and tell them that you’re fading away from this disease and you know there is treatment. Tell them you want to try rituximab and give them the article.
There must be some large medical centers in Tucson, so you can also call them. Enlist your husband’s help in making calls. And try Mayo Clinic again!
Think you can become your own advocate? I know you can!!