Reply To: 40 days and no response to ivig – can it still work?
I too had no response from IVIG. Also no luck with Plasmapheresis. Prednisone and Rituximab have started me on my recovery. I had paralyzed vocal cords, along with a plethora of tongue issues, so I had a feeding tube for ~6 months and have been able to eat and drink without it for about 3-4 months.
Prednisone is harsh, and we tried to gradually come off of it, treating only with Rituximab, but I actually relapsed last month without the Prednisone. Another 20lbs lost due to atrophy. Restarted Prednisone and are looking at substituting the Prednisone with Imuran in about a month. From my understanding and discussions with Emory, the Rituximab is suppressing my T cells and the Prednisone suppresses my B cells. It is apparent that I need both suppressed.