I just wanted to mention this for patients who may have GI and/or neurological involvement, that we’ve been doing IVIG and it’s been helping me improve amazingly. I was without for 8 weeks and drastically deteriorated. I’m just curious if anyone else has done this, and/or plasmapheresis. When I started struggling to walk things escalated, and unfortunately the chemo drugs only worked during the time I was on them. I’d read that IVIG was used in Europe (as is plasmapheresis), it neither appears to be really utilized in the US.
Mostly I’m curious if anyone is on it, how often you get it, and the dose if you know it. Right now I get 40g every month, and we do it 20g one day and 20g the next. Mine has to run slow because sometimes my nervous system doesn’t want to play nice. We were looking to do it every three weeks, but with a new doctor it’ll take time to determine the best option!