ivig treatment questions

    • Anonymous
      October 23, 2009 at 1:40 pm

      Had gbs now cidp. going for IVIG in next couple of weeks. Dont know what to expect. I am a little anxious. will i be able to sit still that long or should i take something to distract me. How will i feel afterwards? Any advcie would be appreciated thanks amy

    • October 23, 2009 at 2:48 pm

      I have been on IVIG for 15 years. I am pre-medicated so when finished I feel no after-effects. I don’t just sit still, I walk around the hospital pushing my pump, read, watch tv and nap.

      For me, getting IVIG is just a day doing that instead of something else and poses no real problem. I hope it is the same for you and that above all it works for you.

    • Anonymous
      October 24, 2009 at 10:26 am


      Nov will mark one year on IVIG for me. I’ve had a few minor problems, but my doctor is very responsive and makes course corrections …

      When I had the loading dose, by day 3 I started to feel almost flu like symptoms and started running a low grade temp (101). The next day of IVIG, a small amount of steroids were added and when I finished my loading dose, I was sent home with a steroid pack. No problem and no more steroids after that.

      I then went to one day of IVIG every 4 weeks. That worked for awhile, but I still was so exhausted at the end of each day (I work full time managing two engineering teams), so he added a second day – 2 days of treatment every 4 weeks. That helped, but I still was on a little roller coaster of surge of energy after treatment and drop of energy the week before. Now I’m on one day of treatment every 2 weeks and I’m doing GREAT! Feeling is coming back, energy stays consistent, etc.

      I usually take a book and my iPod. Occasionally I take my laptop and do some work or watch a movie. I’ve even had teleconferences with work while getting my treatment.

      Additionally, I usually get a Benedryl and some tylenol before the treatments start, so if I haven’t had good sleep the night before, I sometimes sleep through the treatment.

      So, depending on your boredom threshold, you might want to take something to entertain yourself!

      It’s really not bad – and I do feel it is my life line to keep being able to live my life! I’m doing good right now, less damage this year than when tested last year, so it’s doing the trick for me. And with my pain mgt program, I’m pretty much living my life and feel hopeful about my future.

      But also please keep in mind that what works for one, might not work for another. It is a matter of some trial and error, so don’t be discouraged if your treatment gets altered here and there … that is normal to find the best fit for you. I’m so glad my doctor kept at it until we hit on the right combo for me.

      Good luck! Let us (the forum) know how you do with this!!!! And ask any questions you want, this is one of the very best places for information. I learn everytime I read.

    • Anonymous
      October 24, 2009 at 9:43 pm

      When I had IV IgG, I knew it would be really hard for me to stay still that long and so I packed a tote bag of things to do as well as a sweater, tea, and a snack or lunch. I also tried to think of it as a opportunity to sit and do some things that normally I find hard to find time to do–like write thank you notes and letters, read up on a topic that is interesting (I searched and printed things to read a few days before), etc. One of the smartest children I know getting chemotherapy, always came with beads and did beading while she was getting the chemotherapy. It gave her something to look forward to doing and at the end of the day, she had some beautiful pieces that she later would sell to all of us that formed her fan club for trying to be positive through tough times. It kept her from worrying or focusing on the infusion or her disease.
      WithHope for a cure of these diseases

    • Anonymous
      October 26, 2009 at 1:49 am

      Sent a Private Message to you.