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Rituximab off label for RRMS

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    Rituximab off label for RRMS

    Greetings everyone -
    I was diagnosed with RRMS in late 2013. Currently, I am in a "wash out" period and haven't been on anything since December, 2015.
    I've been on several meds, the last one being Tysabri, which caused problem with night pain in joints.
    I now have to decide whether to go on Rituximab, and I hear the infusion can make you sick for a couple of months!! It would certainly help to know others who have gone through the infusions and what their experience was.

    Has anyone been on Rituximab as a disease modifier for RRMS?

    #2
    I did two two-dose rounds of Rituxan and had no problems with side effects either time. Felt absolutely fine, as if nothing had ever happened. But as a counterpoint, not only did it not help me, when my immature B cells matured, I had a relapse a few weeks after both rounds. I actually flared up more often with Rituxan than I did when I wasn't on a DMD at all. Of course I didn't continue on it.

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      #3
      I have had one dose of Rituximab and it took 2-3 days to fully recover. That's normal for me after any infusion so not a big deal. Several people at the infusion center claimed they had zero side effects from Rituximab. Many people are taking Rituximab along with chemotherapy so their experience would be quite different than MS patients.

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        #4
        Rituxan infusions

        I have had three Rituxan infusions since coming off Tysabri almost two years ago. I have had no reactions to the infusion or the med. I would say, for me it has been as effective as Tysabri was.

        I was originally infused with 1,000 mg, then six months later did 500mg. infusion, and nine months later another 500mg infusion.

        For me, it's been a great drug. I have been NEDA for eight years.

        Good luck to you.....whatever you decide.

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