Hello, I have had two rounds of Rituximab so far, one in June of '25, the other in December. I have another session in June of '26. This followed attempts with IVIg and steroids, neither of which helped. I'd say that I am 12-15% better than I was when I started. I'm scheduled to have a follow-up EMG test in May. I think that the reason there is so little information on the subject is that there isn't a lot of money going into research. This is a small club. One of out of 100,000 or about 3,500 people in the U.S.
As others have noted, Rituximab may take a while to have a positive effect. Everyone is different. So, far nothing has gotten worse for me. That's big. Some things have gotten better. Thing is, I'm not just leaning on Rituximab to be the miracle element -- so, it's hard to know to what extent that my improvement is due to the Rituximab infusions. I do targeted p.t. strengthening and balancing exercises, take supplements, do aerobic workouts, use a vibration plate, eat clean, use Tens therapy, use massage, wear awesome shoes, and on and on. More importantly, I never lose sight of the fact that I will overcome this disease. Good luck to all.
@laporta
Have you had Myelin-Associated Glycoprotein (MAG) Antibody, IgM test theoretically if retuximab is working the titers should be dropping?
Also does insurance cover the retuximab, since this is an off label use I was told it would not.
Glad you're seeing improvements, hope it continues.