new meds after IVIG

    • Anonymous
      October 29, 2006 at 2:03 pm

      Had IVIG two months ago I can now walk again but PAIN never went away also it seems to be in my arms , hands and chest. I am now on 2700 of gabpentin and slow release morphine 60mg at nite.. Pain is somewhat better. I need some rest at nite nothing seems to help with the cramps and pain in hands and legs.. I was diagnoised two months ago after complaining for years about leg pain .. Does anybody know if this can be reversed or what kind of CIDP I have, it just seems to stay when others seem to have some kind of recovery.. What is going to happen anybody know.. My doctor seems to just keep telling me just positives I’m walking again and I’m already approved for my next IVIG.. This is not keeping me upbeat…..

    • Anonymous
      October 29, 2006 at 3:39 pm

      Hi there, some things that might help, a higher dose of Gabapentin, your dose is rather low currently. I believe 5400mg a day is max, I was on 3600mg per day for the first 2 years. Also to help with the cramps you can get quinine pills at the health food store or maybe from your Dr, not sure. Also you can get quinine from Tonic Water, just make sure its listed as an ingredient. I hope that helps, welcome to the boards.


    • Anonymous
      October 29, 2006 at 5:18 pm


      Dont you have IVIG every month? Just wondering if you could tell OTH how it helps and why you have it so often.

      [B]Over the Hill[/B],

      This is part of one of Norb’s posts that I copied from waay back. I remember it so vividly because it describes CIDP so well, well, at least the best way I had heard …….

      Of course, I know about the acute onset of GBS and the seriousness of symptoms for many patients but I never understood why in GBS often symptoms would hang on for months or even years and it still would not be considered chronic and not the same as CIDP. The important difference is [B]persistence [/B]in GBS but [B]progression[/B] in CIDP. In GBS the bad antibodies are gone but the damage to the nerves has been done. Symptoms caused by nerve damage continue to exist until and if nerves regrow. They are persistent. In CIDP the bad antibodies don’t go away and continue to do damage finding new areas to attack. Symptoms continue to worsen. They are progressive. For some they remit only to come back.


      Im not sure if this helps is some way ……

    • Anonymous
      October 29, 2006 at 7:02 pm

      Good point Ali, I totally skipped over IVIG. Since you have CIDP you really should be getting IVIG every month, some people go slightly longer then that. It seems to me like them only allowing you to get IVIG here and there, that your nerves are being attacked and damage done while they wait to approve you. Push to get on a regular schedule of IVIG infusions, if your Neuro is hesistant, there is lots of documentation online about the need.


    • Anonymous
      October 31, 2006 at 7:02 am

      Without IVIg every 21 days I would not make it as this is all it lasts in my body. Also how many grams are you getting? Someone here suggested that I be increased from 40 to 60 to see if this stops all the problems inbetween infusions and I intend to follow up on that suggestion.

      The suggestion about tonic i.e. quinine water is right on for the leg cramps. If this does not help, eating a banana or orange before bed time might help. My wife has this problem as she is on diuretics and found that it was loss of salt that was creating this horrible problem and so she would get up and eat some salty olives and guess what, the cramps decreased.

      Also there are some new medications for what they call restless leg syndrome that can be very very painful…but dang I can not remember the name of the medication…maybe someone else can…