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← Return to New to Cytoxan (cyclophosphamide)—advice and help appreciated
New to Cytoxan (cyclophosphamide)—advice and help appreciated
My husband has autoimmune encephalitis CASPR2
He has received Rituximab infusion Twice to help
May be along the same
If anyone has this autoimmune please give your experience and help!!
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@cag, welcome. You may wish to join this discussion:
– Autoimmune encephalopathy anyone? https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/
Hi this is @markwroberts. I have a neurological disease called rhombo myleoneuropathy which is a painful rapidly progressing autoimmune disease. I just started a 6 month course of Cytoxan which I understand is the normal length of treatment. I'm through month 2 on the way to month three is a little over a week. I had Rituxan twice before which helped with numbness in my feet but not much else. Cytoxan is a stronger medicine and I do have 2-3 days where I feel extremely tired and slightly nauseous. However, on day 2 of my first infusion I felt a reduction in the symtoms in my hands. my second infusion has had even more effect. So far the reduction in symptoms has been good when they are happening but transitory so by day 14 I'm almost back to where I started. My doctors had no idea whether Cytoxan would even work on my disease so I'm pleased and hopeful that my next infusion will have even more of an effect. The first couple days are bad for me but the benefits make it worth it.
So what have you been told and what are your concerns?
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