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DiscussionNew to Cytoxan (cyclophosphamide)—advice and help appreciated
Autoimmune Diseases | Last Active: Jan 18, 2022 | Replies (24)Comment receiving replies
Replies to "My husband has autoimmune encephalitis CASPR2 He has received Rituximab infusion Twice to help May be..."
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?
@cag, welcome. You may wish to join this discussion:
- Autoimmune encephalopathy anyone? https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/