Hi everyone, creator of this thread here.
I got my fourth infusion of Rituxan and a new MRI earlier this month. The MRI, my first since last fall, shows no new or active lesions. Always good news when that happens.
While it's impossible in MS to say if your medication is working (after all, I could just be in remission), it seems likely that Rituxan is helping me. I had a very bad run from October 2011 to August 2012, during which I developed my first permanent symptoms and during which new symptoms developed every month or two. Almost all the symptoms I developed during that era are still with me (the last of the problems I developed, groin numbness, might have gone away.) But I haven't had any new symptoms since then. After 10 months of progressive clinical activity, the disease stopped. It seems rational to think that starting on Rituxan in May 2012 had something to do with that.
So obviously I have the good sense to look past my annoyance that these symptoms have stuck with me and be glad to be where I am. I "celebrated" 10 years since my dx this fall and am still walking and pass for a healthy person in public.
More points of interest:
-My doctor says her protocol is to give one more infusion, for a total of five or two calendar years, and after that to just monitor b-cell count. If b-cell count stays low, no additional infusions are necessary. Dr seems very excited about Rituxan, much more confident in it than she was in early 2012. Good vibe on this drug.
-However, I am moving (back) to Texas and will leave that doctor, going back to one I've been with before. He's a well-known MS specialist. I asked his nurse practitioner if it'd be a problem for me to get Rituximab from him and she said not at all... he has several patients on it. I was shopping for insurance on the exchanges and asked if I'd have trouble getting my insurance to approve Rituxan. She said no, it's just a matter of her filling out the appropriate paperwork. I've been through this enough to know it might be hearsay and not trust anything until I have the drip in my arm. But it's encouraging, it seems like Rituxan is more and more of a trend nationwide. To those who have been told that "their insurance wouldn't approve" Rituxan I'd advise pressing your Dr/NP on whether or not they took the time to fill out paperwork, and possibly trying a different doctor.
-I've had a cough a lot this winter but no bronchitis. No flu or notable infection. My only notable secondary symptom this year has been a ganglion cyst on my left ankle, probably caused by gait problems due to ongoing leg muscle weakness/stiffness.
-For those who want to know more about rituximab/ocrelizumab and the role of b-cells, this is the guy who's figuring it out http://en.wikipedia.org/wiki/Stephen_L._Hauser