Sub Q IVIG

    • Anonymous
      May 16, 2007 at 5:43 pm

      Hi everyone. I’ve been around for awhile, but dropped off the site when it went off line a year or so ago.

      I recently read an article about Sub Q pumps for self-administration of IVIG. The article stated that concentration levels were similar to IV pumps, but the study was for immune deficient disease, not CIDP.

      The advantages seem significant: you can do it yourself; you can hide it in a fanny pack; and go about your life while getting infused. My doctor was interested, but didn’t want me to be his first CIDP patient to try it.

      Does anyone have any experience with this device?

      (I understand they’ve been doing something similiar with insulin for years…)

      Any and all information is appreciated.

      THanks,

      Steve

    • Bill
      May 18, 2007 at 7:02 pm

      My Neuro sent me to an immunologist to consider IVIG subcu. She does it all the time for PID patients and it is approved for them. It looked great as a way to get IG and greatly lower the risk of reaction. (I had a biggie and thus am no longer doing IVIG) BUT, Medicare would not approve subcu IVIG for CIDP. So, I did not get to be the trial but would really like to do it as the details I was given make it really look great compared to intravenous. Make a posting if you get to do it. I will probably go back to IVIG but I would really like to do the subcu pump. I forget the name of the company and the product but I understand it is a higher concentration than the usual IVIG of 5 or 10%.

    • Anonymous
      May 20, 2007 at 10:31 pm

      Steve,

      My daughter sees Dr. John Sladky at Emory in Atlanta and this last faal he suggested SubQ IVIG for her. My daughter said no as she has a friend who gets subQ injections of growth hormones and the friend gets so emotional about them that it scared my daughter away from the idea, we got another port. Dr. John Sladky is on the Medical Advisory board for the GBS/CIDP Foundation.

      Good Luck,
      Cindy

    • badmommy
      May 30, 2007 at 1:45 pm

      I’m going to NorthWestern in Chicago on Friday to see a specialist and this is one of the many things we are to discuss. I always joked that IVIG should come in a pill form – looks like we are getting closer, LOL!

    • Anonymous
      June 1, 2007 at 11:13 pm

      Ohio State University is going to do a study to see if it is as effective as an infusion. My Neuro has put my name in for consideration as a participant.

      Ron