Repeat IVIG Question

    • Anonymous
      January 19, 2007 at 1:32 am

      Has anyone ever needed another treatment of IVIG? Did it help?
      Many thanks in advance.

    • Anonymous
      January 19, 2007 at 9:20 am

      Yep I have had a total of 6 since July of 05….IT has helped me eveytime. I have been doing better and not any of late but if i feel myself slipping I would have another round in a heart beat.

      God Bless

    • Anonymous
      January 19, 2007 at 9:24 am

      Hello Claire,
      I have CIDP, the chronic stage of GBS. We are all different, what works for one, may not work for another, so you’ll get positive and negative responses. IVIG’s are often given as a maintenence, rather then a one-time treatment. I was on IVIG’s from 1999 to 2003 and I did very well with them. I was getting them one day every two weeks. I stopped progressing and no longer need medications. If you have had IVIG’s and you and your doctor feel they helped, I would go on a maintenence.

    • Anonymous
      January 19, 2007 at 12:37 pm

      Hi! I’ve had two courses of IVIG (five days each) – in October and December. Both gave me remarkable results. My neuro and I are going to try 1-2 days as “boosters” starting this month. I’m told that if IVIG works, it REALLY works! I call it my “miracle juice” and am thankful I was correctly diagnosed with CIDP and had a neuro who knew what to do. Go for it! Good luck and good health!

    • Anonymous
      January 22, 2007 at 12:24 am

      I had 6 IVIG treatments before leaving the CCU. 1 after I went to the rehab hospital. My neuro wants me to have another every 6 months. ??? All I know is they say I’m a miracle.

    • Anonymous
      January 22, 2007 at 12:27 am

      I also had plasmapheresis so who knows? My neuro is supposedly the best in the state.

    • Anonymous
      January 22, 2007 at 1:15 pm

      My neuros are talking of possibly another IVIG treatment. After I have some other tests, they said they will decided whether or not to do another course.


    • Anonymous
      January 28, 2007 at 1:43 am

      Hi Claire,

      I have CIDP. Symptoms began about 6 years ago. Finally diagnosed about 2-3 years ago and have been on IVIG ever since. Anywhere from 2 to 4 doses per month to keep things in check. It has helped tremendously, but need it often to keep me going. I feel great for the most part, but am worried about the long term effects if this doesn’t get better. God bless you in your health.


      [QUOTE=santafe]Has anyone ever needed another treatment of IVIG? Did it help?
      Many thanks in advance.

    • Anonymous
      January 28, 2007 at 10:43 am

      Mnsummer – My 5 year old daughter has had so many IVIG treatments that I’ve lost count as well. I know it’s probably well over 50 by now. We saw an immunologist back in December & he said that IVIG has been used since the early 80’s and so far they haven’t discovered any long term side effects.

      Just wanted to let you know that because I too worry about the long term possibilities with the treatment. Hearing him say that did make me feel better.

      Good luck!

    • Anonymous
      January 29, 2007 at 11:34 pm

      Many thanks. It’s going to be my repeat treatment if I start failing again.
      For now it’s good days and bad days. I am learning to check in with my care takers about improvemt since it’s hard for me to tell sometimes.