Stopping IVIg Treatments

    • gpquinn
      June 1, 2024 at 9:07 pm

      I started IVIg treatments for CIDP nine months ago.  I currently receive three infusions every four weeks.  It has been effective for me:  before I started I needed a walker or a wheelchair to get around; I currently mainly use my two hiking poles, although I still can be a little unsteady.

      I have asked my neurologist what would happen if I stopped the treatments- would I lose the gains I have made and regress or not.  He is unwilling to give me a direct answer.  I would like to go back to work, but the current schedule of losing one week out of every four makes it difficult.  (I find it takes at least two days to recover from the fatigue.)

      Does anyone have any experience stopping IVIg treatments?  Did you regress or did you maintain any gains you had made?

      Thanks.

    • David
      June 1, 2024 at 9:18 pm

      While I’m not a doctor, I’d say you most certainly will lose all your gains.  Your body is still producing the protein that is attacking your nervous systems myelin sheath.  I highly recommend trying medication such as Cellcept.  I have had great success with it and take it 2x daily still and I work full time.  You’ll likely have to be on prednisone for a couple of months while also taking CellCept as the Cellcept takes 2-3 months to start working.

    • Ron Brunelle
      June 2, 2024 at 7:59 am

      I’ve never stopped completely, but a few months back my doctor reduced my medication by half, because my kidneys function was reducing because I was doing so much Gamunex, that sent me into a tailspin.  I lost years of progress. Funny thing is, previously the CIDP mostly attacked my feet and legs, now my hands are being effected to the point where I don’t have the strength to open a bottle of water or turn the key to open my front door.

    • gpquinn
      June 2, 2024 at 10:51 am

      Thank you very much for your insight and comments.  I have an appointment with my neurologist next week; I’ll ask him about alternatives medications to the IV treatments.

      For me, the biggest impact was on my legs and feet, since it affected my mobility.  But my hands are affected as well- I have trouble using a knife and fork, and other fine motor skills in my hands.  Sometime I feel like a little kid shoveling food into my mouth.

    • chirpybirdy
      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.