Questions about sq IVIG

    • June 26, 2012 at 11:34 pm

      Hello out there- as I write , I am recovering from my usual side effects of my 4-5 hour IVIG infusion of headache, nausea, fatigue, and chills and wondering if there are any updates from any of the current sq ivig users out there. I have tried to decrease my IVIG interval from every 10 days on which I was fairly stable to every 2 weeks and it is not working – had to get an extra infusion this week to bring things back under control. I know they are doing a clinical trial in NYC but I am not a candidate due to Imuran as well as having some atypical features and other autoimmune disease. The IVIG works but the inconvenience and side effects of the infusions stink! I am small 5 feet and 105 lbs currently receive 20 grams of IVIG per infusion ( gammunex) . Thank you for any info or experience you can share.

    • Anonymous
      June 27, 2012 at 3:18 am

      What clinical trial are they doing in New York, and where is it being conducted?

    • June 27, 2012 at 12:14 pm

      Hi there- there is a clinical trial being conducted by CSL Behring looking at sq ivig – it is actually a multi center trial ( nyc happens to be closest center to my home) . The investigators in NYC are at Weill medical college. You can find it on clinical – I am going to look into this again as I feel like there has got to be a better way! I think if they find this treatment effective , this will be a huge improvement in quality of life for those of us who are dependent on long term and frequent IVIG infusions.