Anyone using IVIG longer than 25 years?

    • August 31, 2021 at 10:15 pm

      Hi, all, I just joined.  I’ve had CIDP since late 1988 although the official diagnosis didn’t come until 1991.  I’ve been on continuous IVIG therapy since May 1995 and with the exception of two or three treatments, exclusively using GammaGard.  I’m curious if anyone else has been on continuous IVIG treatments for a similar amount of time.  I’m currently at 26 plus years.  I started at 160 grams every five weeks, eventually weaned down to 40 grams with prednisone support but over time have had to ramp back upward (no prednisone) and am currently taking 170 grams every three weeks.  The good news, is I’m functionally in very good condition.

    • September 1, 2021 at 9:03 am

      I have been on IVIG every 4-5 weeks since 2011 without any problems. I get 35 grams of Gammunex IV every 5 weeks and don’t need any steroids. So going on 10 years and I am still getting good response from the IVIG. But I cannot stop the infusions without consequences. I tried to push out to 6 weeks between infusions and had symptoms come flooding back. So I know my disease is still active after 10 years – I have not gone into remission. But as long as I am responding to the Gammunex I will stay on it. My functioning is pretty much normal as long as I get my infusions on time. Good luck to you!

      • September 1, 2021 at 7:52 pm

        I’m on my current 3 week plan because we also tried to stretch my plan about six years ago.  I was doing well at 4 weeks and 80g.  We tried to go to 5 weeks and things just went to pot.  Going back to four weeks didn’t cut it.  Going to three helped, but still seeing a deficit after 2.5 weeks.  So we eventually went the full dose route at 2g/kg of body weight which brought me to 170g per treatment and that works.