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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-18-2019, 02:11 PM | #6 | ||
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Hello. I want to ask how you feel about the treatment now and how much you have overall infused. Thank you.
Daniela QUOTE=4-eyes;1252471]Hi everyone, Just thought I'd report on my experience with Rituxan. I have MuSK positive MG (19 years and counting) and I am quite refractory. Last year about this time I could no longer get Gamunex authorized, and luckily I'd already begun to pursue Rituxan. On Jan 10 of this year I had one infusion. The effects were immediate but somewhat modest. My neuro ordered a second infusion on Feb 27 and I immediately went into the closest thing to a remission I've had in about 12 years. I got off of Cellcept immediately and I also began weaning from my 20 mg dose of prednisone. I'd been using pred non-stop since 2011. On July 31 I finished my last dose of pred!!! Oh yeah, baby! I'd been doing monthly labs to monitor my lymphocytes. A couple of weeks ago the CD 19 count finally became measurable and I asked if I could be scheduled for another infusion. It's scheduled for later this month. Good thing, too, as I've become mildly symptomatic again. Still, I had a lot of good, symptom-free months! I even made it through a hot summer with no heat issues! Finally, after all these years, I've found my miracle! I hope it keeps working forever! Thanks for reading![/QUOTE] |
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