Rituximab
Is anyone on Rituximab? If so, can you please let me know your experience with it and how it affects you? Thank you. Any info will help.
while I don’t have personal experience with Rituximab, one of our advocates shared her experience in these articles https://neuromyelitis-optica.net/living/rituximab-experience and https://neuromyelitis-optica.net/living/full-rituximab-infusion. I hope these are helpful. Don’t hesitate to reach out if there is anything else we can help with. All my best, Julie (team member) Thank you.
I was on Rituxan for 12.5 years, although it kept me stable, it also wiped out my IgG levels and got extremely sick, was septic and in the hospital for almost a month. I don’t want to give you any negative advice on Rituxan as I’m just sharing my experience; however, I will say if you’re on it, please please have your Doctors check your IgG levels as often as they check if your B Cells have repopulated.
Hope this helps and best wishes on it.
-Sandra Moderator/ Contributor
hi, I've currently on rituximab and have 4 infusions a year. I must admit I was reluctant to start this initially, however I suffered 2 further relapses and was not tolerating the mycophenlate, which made me experience hallucinations.
I started rituximab in 2021.
The first infusion dose, the experience wasn't a pleasant one. I recieve a antihistamine with my infusions now to reduce the awful soreness I get in my throat when receiving this drug. ( has anyone else experienced this?)
I am given 2 infusions 2 weeks apart amd then this is repeated 6 months later.i find by the 2nd infusion, I am physically drained for about a week. In all of this, i would say that it is helping, as I haven't suffered any further relapses thus far.
My iG levels and B cells are carefully monitored in between infusions.
I think everybody will have their own individual experience but thus far, I am generally better. My consultant recently wanted to try reducing by down to 2 instead of 4. It remains at 4 currently partly because I'm pertified of suffering a relapse. Perhaps my mindset at the moment is, if it isn't broke why try to fix it.
I do however wonder, how long I will have to take or rely on this drug. It is a concern of mine, but I'm trying to take one day at a time x
