Reply To: Rituximab (Rutixn)

February 24, 2017 at 9:14 pm

Hi Jim,

I missed your posts on anemia the other night , but have read the links proved and appreciate your reply.I am glad to hear you are seeing results beyond the projected 3 year mark. I am just over the 20 year mark and am optimistic the Retuxin will at least stop this latest activity of the disease. The neuro at Vanderbilt is asking my attending neuro here in Atlanta to do one infusion of retuxin, followed by a second infusion two weeks later, then once a month for six months. She also wants me to continue the plasma exchanges every three weeks with the 1,000 mg Iv solumedrol. If agreed to, this will be the most aggressive effort I have seen since the ’96 diagnosis. When I had GBS in ’85, I received no treatment other than PT, but back then there was not much to offer and I took what mother nature gave me. As time has passed and I see all of the new therapies that are here now, and in the hopper, I am always encouraged.
My Atlanta neruo did mention Ocrelizumab in his referral letter to the doctor at Vanderbilt, but told me that is not yet available, but does show promise in the near future. The Vanderbilt doctor also talked about some of the outstanding results they have had with new stem cell treatments. She has one such patient who was chair bound and is now walking, but added that this is a very difficult process and carried higher risks and is considered a last resort option. I’m not there yet.
I wish I had inquired and visited this center of excellence much sooner as I now have an option that was not offered to me prior to the Vandy visit.
Thanks for you response and I hope you continue to see more wiggle in those toes, regard,