Fourth Tysabri infusion today. The nurse practitioner said something about “When you go off.” I was surprised and asked, “have you ever heard of someone going off Tysabri for any reason other than bad reactions or JCV-related indications?” She said “yes” when things cleared up.” And I said “you mean in people with Crones?” and she said “no, with MS.”
I have not asked my neurologiist if I could go off Tysabri if I get to a point where there is no evidence of disease activity. I was diagnosed in April 2018 and there was a lot of disease activity at that time so it may be rather soon. I have asked him about the process of transitioning to other meds. The NEDA scenario is a question I’m planning to ask this coming April.
What the infusion nurse said did not sound accurate to me though. I would love to subscribe to that plan of course, and every day I imagine staying in remission.
I have not asked my neurologiist if I could go off Tysabri if I get to a point where there is no evidence of disease activity. I was diagnosed in April 2018 and there was a lot of disease activity at that time so it may be rather soon. I have asked him about the process of transitioning to other meds. The NEDA scenario is a question I’m planning to ask this coming April.
What the infusion nurse said did not sound accurate to me though. I would love to subscribe to that plan of course, and every day I imagine staying in remission.
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