Reply To: Stopping IVIg Treatments

June 5, 2024 at 10:08 am

I have been on the same dose of Gamunex IVIG for 12-13 years now. I have not had any symptoms of my CIDP and living life normally. I get 35 grams IV every 6 weeks. My neurologist wanted to reduce my dose to 30 grams and see how I did. He said sometimes you can go into remission and would not know if I was unless we tapered off my IVIG. Immediately after my first infusion of 30 grams I started to have symptoms again! I would not have thought just adjusting down by 5 grams would have such an effect on me. I now am back on 35 grams but during the month between the lower infusion my body was attacking me again. I now have permanent neuropathy in my lower right leg that feels like stabbing in my shin and constant charlie horses in both calves at night. I am thinking I will have to be on IVIG for life unless another treatment comes forward.