← Return to New to Cytoxan (cyclophosphamide)—advice and help appreciated

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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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Replies to "Hi this is @markwroberts. I have a neurological disease called rhombo myleoneuropathy which is a painful..."

@markwroberts Thanks so much for responding! You’ve eased my mind already. I remember Cytoxan as a very powerful drug that caused lots of side effects. My real problem, I think, is that I just can’t come to terms with having the autoimmune disease in the first place . I know I have to accept the disease and treatment , so I can get on with life. You letter has helped, thank you.
We’re you able to get your disease quickly diagnosed or was it a long process? Autoimmune diseases are just no fun!