?ivig ? reflexes ? remission

    • Anonymous
      December 19, 2007 at 5:01 pm

      When do most people notice a difference, if the ivig is going to make
      a difference? I’m on my third day of a second round of ivig. had
      five days in Nov. and did not notice much of anything from it.
      I have cidp with some axonal damage and high protein in spinal tap.
      I have no reflexes from elbows to finger tips and from above knees to
      the toes. My whole body zings and zaps at times. and Do the reflexes
      ever come back and is that what means a remissioin?
      How does one determine they are in a remission? How does one
      determine a remission and a holding pattern vs that it is getting
      worse? vb
      I know I’m not at present and the cidp is still progressing slowly.
      When does one know that this is a “new Me” and learn to live with the
      present day restraints?
      i know so many questions. probably not a lot of answers if i
      understand what i’m reading and all of us react different to the cidp.
      What treatment comes after the ivig?
      I’m whining, i feel like this been forever and it is only, since mid
      oct this year. Nov i was walking on my own and doing own work around
      the house and driving.
      now i’m on a walker, barely able to manage that at times, and can do
      nothing around the house .
      How many months can this progress?
      Guess that is enough questions for now.
      Thanks again to everybody on this forum. You all are so helpful

    • Anonymous
      December 20, 2007 at 5:16 am

      you are probably a candidate for plasmapheresis [pp] since the ivig does not seem to be doing much. reflexes are not as big a thing as docs make them out to be. unlike ms, gbs has no remission per se. with cidp your body is constantly being attacked. the ivig or pp neutalizes the current bad antibodies while the immune system is generating newer bad gbs antibodies. you need ivig or pp often enough so you don’t get worse. if neither works, you need other meds that have adverse reactions, but may be the lesser of the evils.


    • Anonymous
      December 21, 2007 at 5:20 pm

      Every case is so different, yet we do find much common ground. Mainly on the REST category. That is something we all have to be reminded of frequently.

      I am 10 years almost 11 years post and still have no reflexes anywhere and neuro never seems to be worried about it. I have only gone to neuro for updates every 3 to 4 years.

      Good luck on learning how to be more patient than you ever thought you could!

    • Anonymous
      December 21, 2007 at 5:48 pm

      This is a post from a thread called [B]’Question about Pain Meds'[/B] on the CIDP forum. I have copied and pasted some of what I wrote (from the beginning of November sometime). I hope it helps

      Last weekend, the Philidelphia group had a chapter meeting. The speaker was Dr. (sorry, I am going to get his name again from the foundation and post it for you)…… There were a number of CIDP patients in the group and he answered a number of questions regarding treatment, what was effective, what to do if certain treatements werent effective etc. Here are some of the notes I took from his answer and question time. ….

      # As we know, certain varients of CIDP react better to certain treatments. He said that in his experience, if the patient did not respond after 2 or 3 IVIg therapies then he added sterroids to see if there was a response.

      # next step would be (I think the IVIg would have been discontinued when following this step), High dose sterroids everyday, then change it to every other day and add Cellcept or similar (up to 3g), and then lower the sterroids more.

      # Then if that didnt work, he would try Plasmapharesis

      # consider Retuxan (sp?)

      These are from my notes, and I was trying to write them down as quickly as he was speaking. He was responding to a patient who asked him what would his treatments be if IVIg failed and what steps would he follow to find one that did work. He also mentioned a couple of treatments that may work for CIDP, but they have been removed from the market because they are so dangerous, so there is a possibility way down the line that some trials may be considered with some of these drugs, but that is still way down the line if it happens at all.


    • Anonymous
      December 28, 2007 at 9:50 am

      I have symptoms similar to yours. Had IVIG with no results and plasma exchange with positive results but never got beyond a walker. Still on the walker. Also feel the zings and zaps particularly in my abdomen and feet. DX in mid October and have been up and down since. Now on plasma exchange twice a week. Doc is talking about putting me opn steroids which I really don’t want to do.