So I'm researching treatments for refractory MuSK+ MG. Let me tell ya, there aren't a lot of options. The two most viable at this time seem to be Cytoxan and Rituximab. Both are chemotherapy drugs.
The Cytoxan has fewer side effects but they seem to be more prevalent. I would probably lose my hair, and could get bladder cancer.
The scariest thing about Rituximab is this horrible disease called PML which has a 90% fatality rate. I don't think it's a COMMON side effect, but it's a possibility.
So if ya'll want to say some prayers for wisdom, I sure would appreciate it.
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Scary choices, but God will guide!
I totally agree with Renee Ann on this one. Have you talked with anyone else that has tried either of these things? Is there one that is a little better to try first? I am hoping for the best and hoping that you are doing better and that you are enjoying your time with your family. Love to you always!
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