IVIG Update

    • Anonymous
      June 17, 2008 at 5:07 pm

      Well since I am sitting here hooked up to an IV for the next 4 hours I thought I would give you all an update on my IVIG treatment. I am now on my third round of IVIG treatments (Gammunex 40g a day x 5 days a month) and am showing signs of improvement. I can now walk without doing what my wife lovingly called “the zombie shuffle”. Before the IVIG the hardest part of the day was getting from my car to the office I worked in and that was only a few hundred feet. Now I can walk almost normally in the morning even though I am still showing signs of fatigue in the evenings. I can even kind-of keep up with our 2 year old and 4 year old. I still don’t think I am at 50% of where I was pre-CIDP but it feels good to make progress in the right direction. 🙂

      –Ian

    • Anonymous
      June 17, 2008 at 6:11 pm

      Things sound like you are responding very well to the IVIG Ian. My husband began his first IVIG in September 2007, and has it monthly (100 G. over 2 days a month). He has done super well. He was doing the “zombie stare” i.e. immobilized sitting and staring with no energy, and he could not hold a coffee cup in his right hand. Now he is basically back to pre attack behaviour. He is trimming our horses feet with that wasted/atrophied hand as the strength has returned 75% and he only suffers fatigue by the end of the day. It has been like a miracle. I would say that he got most of his mojo back after the 6th treatment. I hope your road to improvement keeps going like my husband’s did. Having said that I’m knocking on wood that things keep improving for you and my husband.
      Laurel

    • Anonymous
      June 21, 2008 at 8:42 am

      Ian,

      I am glad to hear that you are improving. The fact that you can work at all, let alone keep up with the kids is amazing. The key is not to overdue it or you can set yourself back. You have to find a balance between resting ALOT and those activities in order to help you recover. Best of luck to you.

      Jerimy

    • Anonymous
      June 21, 2008 at 4:04 pm

      [QUOTE=iallison]Well since I am sitting here hooked up to an IV for the next 4 hours I thought I would give you all an update on my IVIG treatment. I am now on my third round of IVIG treatments (Gammunex 40g a day x 5 days a month) and am showing signs of improvement. I can now walk without doing what my wife lovingly called “the zombie shuffle”. Before the IVIG the hardest part of the day was getting from my car to the office I worked in and that was only a few hundred feet. Now I can walk almost normally in the morning even though I am still showing signs of fatigue in the evenings. I can even kind-of keep up with our 2 year old and 4 year old. I still don’t think I am at 50% of where I was pre-CIDP but it feels good to make progress in the right direction. 🙂

      –Ian[/QUOTE]
      This is amazing. We cannot even convince our doc to do 3 or 4 weeks apart of instead of 6 weeks. I am taking this to the infusion place and see how they react.
      Joanf
      ps there was no place to do a quote.