I am so glad Rituxan worked that well for you! I had 2 infusions about 2 years ago and they worked well for me also; not quite as well as yours, but definitely made a difference. I am calling my neuro for a blood test for the CD 19 levels because I think it is finally time to maybe have another infusion. But I'll take 2 better years for each infusion every time!

Juanita, your experience with Rituxan influenced me to go ahead and try it. I think because I have MuSK MG I had the better response. It just seems to work better for us. Now, however, you ACHR folks have Soliris which is just as much of a miracle for many. You may want to ask about it, although the price tag is through the roof for it. It would probably take a lot to get it approved.

Stay well!

Hi all. I am refractory too and just had 3 of 4 infusions of Rituxan. makes me really sick for a couple of days, but I am feeling serious relief from my symptoms.

I have had MG for at least 25 years, and was actually treated for Lyme disease at one point.

Finally, a neurologist found a 2.2 pound thymoma crushing my left lung and laying against my heart. I felt pretty bad all the time. After the surgery though, everything went to hell and my condition became severely worse over the next several months. It's been a slow battle of ineffective drugs, but this Rituxan seems to be working for now. I just don't know how long it will last.

Good luck to all of you!

DynaGuy, Sorry you had side effects. I only had facial flushing the mornings after infusions and would sleep REALLY well for a few days. Never felt bad.

My improvements continued for months after the second infusion. Hopefully you will also have sustained relief, too.

Thanks. Things have been pretty good.
If I could just stop getting thrush, or burning tongue, I would be really happy! Stuff hurts. Otherwise I've been really good since the infusions.

I have had that since I was in the Hospital. If you find what helps you please post.
Mike