How harmful is.it to stop/start/stop IVig?

    • TimsWife
      October 10, 2022 at 7:24 pm

      My husband has been getting IViG infusions on and off for the last couple of years. And when I say on and off, it was never by his choice. We are, once again, in an off. He believes that any abilities he loses during this time he will never get back, like in MS. Does anyone have any advice?

    • Ron Brunelle
      October 11, 2022 at 4:33 am

      Its not that you won’t get it back, you’ll have to start all over again. You can’t stop, why would you do that? I tried spacing out my infusions from two days every three weeks to two days every four weeks. I lost all my gains in health. Now I’m back to the three week schedule. Stay with it, it may be a life long thing, it beats being a cripple.

    • TimsWife
      October 12, 2022 at 12:18 pm

      Thanks, Ron. That is exactly the schedule he was on, two days every three weeks. But then insurance switched and doctor needed more paperwork and now insurance says they aren’t sure he still needs it. Docs are still battling for him but it has been months without. Very frustrating!!

    • chirpybirdy
      June 5, 2024 at 11:41 am

      I have been on IVIG now for 12-13 years for my CIDP. I am at a maintenance dose of 35 gr every 5-6 weeks. Every time my neurologist tries to decrease the dose or extend to more time in between, my symptoms come back. So, I think I will need to be on IVIG for life to keep my CIDP from having active attacking.

    • Bryn
      December 7, 2024 at 4:44 am

      I’ve been on IVIg every two weeks for 9 years. If there is a delay to 3 weeks or longer it makes me bed bound. I get 135g (1g/kg of body weight) over 2 days every two weeks.

      It takes a while to recover. Our immune systems stop producing as many damaging antibodies when we get the ivig. A consistant treatment can reduce or eliminate enough damage that we can even heal a bit in the long term.

    • Shellblues
      December 23, 2024 at 11:22 pm

      I’m so glad I read your responses! Just started IVIG in June, 2 days once a month. Two months ago, started 2 days every three weeks. Am hoping for more of a response with more frequent infusions. Two years ago, within two months went from walking, to cane, to walker, to wheelchair. Had no idea what was happening to me, as I’d always been pretty healthy I’ve been essentially paraplegic since then, can’t stand at all. Switched neurologists as first one did nothing for a year. Any additional recommendations in terms of diet, exercise, etc? I’d really like to walk again someday, but if this is my life, I just want to live the best I can. Thank you, and happy holidays, all!

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