Question about IVIG

    • Anonymous
      July 30, 2008 at 11:38 pm

      I see alot of you talking about the IVIG treatments, but I don’t get those or has my doctor mentioned it that I can recall. This may be something I need to ask my docotr about.


    • Anonymous
      July 31, 2008 at 7:35 am

      Good morning Scott.
      IVIG is the main treatment for GBS.definatley confront your doctor. get an answer no matter what. If you don’t mind me asking do you have insurence. if so it could be your insurence company as IVIG is very expensive. Mine was $13,000 a bag and I had 5. Please keep us updated also explain more about your GBS I have you in my prayers (Steve)

    • Anonymous
      July 31, 2008 at 9:41 am


      [B]IVIg will NOT help[/B] you now. It is only given during the GBS attack, within the first 4 weeks, and possibly another round 2 weeks after if there is no improvement. Having IVIg will not work for you now as your body is no longer under attack – it will cost a great deal and may make you feel good, or bad (depending on your reaction) for a couple of days afterwards and have no long term benefit.

      The IVIg that you have been reading about that is given on a regular basis is for CIDP which you do not have. Your residuals are part of your recovery and life post GBS unfortunately and there is really no treatment after GBS except to try and keep the pain etc away with medicaitons.

    • Anonymous
      July 31, 2008 at 11:56 pm

      thanks for the info ali mochoacat . Well I started out I got bit by a spider, thought nothing of it ,wasn’t the first time because I work construction. WEll that night I went to having bad spasms and cramps ,fever, didn’t know what was going on. WEnt to the ER they gave me a corozone shot, muscle relaxer and sent me home I got to feeling better well the following Thursday I went to the DR he lansed it. Then that Friday night I took the kids skating I got on the skate KNowing better I did anyway well the next morning I woke up sore thought it was from the night before falling skating, so the day lengered on and the worse I got, that day 2 of my boys had a football game about 4:30, my legs were feeling like noodle and numbness I ended up walking with my baby stroller to get to and from the ball field. I went home about 9 pm that night things were worse I thought I had hurt my back some how. WEnt back to the ER my wife nearly had to tote me in. THe Dr Looked at me and told me there was nothing else I can do for you, My wife got me back in the car we got back home around 12 a.m. by 3 a.m I was paralyzed from neck down all I could move was my head. Amy(wife) called my dad and brother they came and got me in the car and Amy took me to Sacred Heart Hospital in Pensacola Florida.
      They kept for hrs and hrs running different test and the DR. then couldn’t figure out what was wrong and was going to release me and come back the following morning and thats when my family slung a fit they ended up keeping me in observation and the next morning Dr. Ken came in and started running more test they ran one test for GBS but it came back neg because of the inflamtaion on my spine , A neuro came in and he started treating me for GBS and got another spinal test and it come back positive, They done a 5 day treatment. I stayed in Sacred Heart for 4 weeks then moved me to West Florida Rehab where I had a great team I couldn’t sit up my blood pressure was going sky rocket, we got it situated I was there 9 wks they had me walking with a walker/ wheelchair when I left there. Since then I have slowly progressed to walking shorts distances. I am slowly getting better.

    • August 1, 2008 at 12:34 pm

      Hi Scott,
      Sounds like you are on your way. Since it has been so long and your dx is gbs, as Ali mentioned, additional ivig would not help. My son was stung by 3 bees, we think that was his trigger, but he has cidp, not gbs. Good luck!
      Dawn Kevies mom

    • Anonymous
      August 1, 2008 at 1:06 pm

      Hi Scott-I agree with Dawn and Ali-maybe you could also post your questions on the GBS thread, and compare what they are getting for GBS treatment. Wishing you all my best. Emma

    • Anonymous
      August 1, 2008 at 6:51 pm

      Wow Scott! You had a bad experience with that spider bite. I know that was very scary. Can’t believe the hospital’s did you that way, but then again, I can because of my experiences with them myself.
      I have learned when it comes to something rare they have a time handling it. If it’s something simple then they can handle that. But anything rare requires a center that deals with rare. I have learned the hard way. I never heard of CIDP until the other day when my neurologist told me I had it! And now am learning quite a bit!

Question about IVIG

    • Anonymous
      August 27, 2006 at 9:15 am

      My husband had his first round of IVIG last week and there wasn’t much change. Does anyone know if it takes a while to notice a change or would you notice right away?

    • Anonymous
      August 27, 2006 at 10:03 am

      In my case there was hardly any change the first time around, The second round (May/June/July) I saw first improvements after a couple of weeks or so. The way I understand it, IVIG modulates the auto-immune response quickly but it takes quite a while for the myelin to grow back.

      Some people here have reported very fast results which surprises me since I believe the myelin has to regrow first.

      Another thing to consider: different people react differently to IVIG. There is no hard and fast rule. Also, it’s probably not fair to compare results to me. I have a variant of IVIG which is supposed to react poorly to IVIG, Plasma Pheresis or steroids. But I am sure you will be getting more responses to your question from forum members who don’t have a variant.

    • Anonymous
      August 27, 2006 at 10:39 am

      hi deedee, ivig slows the progression of nerve damage, it can make one feel alittle less fatigued, kind of like an adrenalin rush, but not to the extent of being great or healthy again. it might also help with the nerve pain, but that too can wear off, or not happen in some people. hope your husband is feeling better soon. take care.

    • Anonymous
      August 27, 2006 at 12:22 pm

      IVIG affects different people differently, and effects (especially side effects) can even vary from batch to batch sometimes.

      Two days after my very first “loading dose” I remember noticing that I had slightly more sensation in my toes. However, subsequent times I didn’t notice a change in quite the same way; I noticed more that I wasn’t getting worse. I have some exercises that I do every day or two that are useful in measuring progress, but there is usually no point in trying to compare one day to the day before it. Unless I am in a rapid decline, comparing to a point one or two weeks ago is a lot more useful.

      So, have patience, hopefully you’ll notice the effects of the healing soon.

    • Anonymous
      August 28, 2006 at 7:59 am

      It’s probably just in my mind but….after each of my IVIG treatments (5 over 12 months) I always seemed to feel a little better the day after each treatment…..who really know but they seem to work well for me.

      God Bless