ivig treatments

    • Anonymous
      April 17, 2009 at 10:06 pm

      I”ve had 97 infusions at the rate of 3 per month. The last few months my legs have gotten weaker and my feet are more sore and numb. I guess i”m wondering if this a normal progression of cidp and if anybody else has had the same problem , and if i should be trying something to slow this down. I”m sure my age is a factor in my muscle loss [72] I do not take any other medications except for the infusions

    • Anonymous
      April 18, 2009 at 12:09 am

      Bull Moose,

      I have to lie on the couch with my feet in the air to try to reduce the swelling. I have lots of pain and numbness in my feet.

      Also some people find relief with heat. I use microwavable rice bags ( a cloth bag with rice in it) Make sure you sew the bag securely to avoid a big mess.
      Put it in micowave for 2 minutes. I find it helps a great deal.. Also preheats my bed!

      Rhonda

IVIG Treatments?

    • Anonymous
      September 1, 2006 at 10:06 pm

      Hi,

      Those of you who have gone in for ongoing IVIG treatments, I was wondering if you had gotten better from them and then had more and gotten worse. My cousin who had GBS 18 years ago and now they thought has CIPD has been getting IVIG treatments. He said his first three made him feel great but the last two have caused muscle weakness, pain in his spine, and dizziness. Anyone have this problem?

      Thanks
      Caroline

    • Anonymous
      September 1, 2006 at 11:39 pm

      Hi,

      Probably better asked on the CIDP side. Are steroids going along with the IVIG? If so, those are side effects one can get from them too. Sounds like the protocal they have going, may need some serious adjusting. Which, like everything it seems, is trial an error too.

    • Anonymous
      September 2, 2006 at 12:04 am

      Caroline,

      Im curious if they have considered and/or ruled out ‘post gbs’? There are a number of us who have it decades after our initial onset, sometimes it seems so similar to CIDP.

    • Anonymous
      September 2, 2006 at 11:33 pm

      Hi,

      Thanks for your replies. He also has difficulty with balance and walking. He is going to get a motorized scooter if insurance if he can. He’s in his late
      50’s. I’ll ask him these questions. How do they tell the difference between CIPD/GBS?

      Caroline

    • Anonymous
      September 3, 2006 at 1:00 am

      he might also have been getting 2 different brands of ivig. have him check between the 2 different times, which brands were used.:)