Ivig protocol for anti-mag

    • Anonymous
      July 25, 2007 at 12:14 am

      Iam looking for infusions protocols for Igiv for anti-mag.
      Ive done the rituxan program with no drop in titres, and after a lot of research I find B-cell depletion a low efficacy high risk option. Ive have found no research to support long term efficacy and in many cases even with complete depression of immune system with transplant therapy anti-bodies do come back.

      I suspect Ivig may be a more elegant therapy in that is interferes with the attack process as opposed to taking out the pro generators.

      I know this will generate discussion but I’m looking for guidance on protocols.
      my doc is willing to try Ivig given the low efficacy of rituxan

      many thanks to you all ,this has been a less of a lonely experience because of you all…

    • Anonymous
      July 26, 2007 at 11:16 am

      Strange, the literature I’ve been reading including fairly recent ones seem to say just the opposite: IVIG has a low success rate for antiMAG while Rituxan has been shown to be the only treatment besides chemo that helps. Yes, the B-cells do come back and it has to be repeated every six months or so. Prednisone makes the symptoms worse.

      For IVIG the usual amount is 2g/kg. I weigh 97 kg and receive a total of 195 grams. The very first time the infusion was stretched out over 5 days, after that 3 days. Since I am taking it well, we start with a rate of 50g/hour and bump it up by 50 g/hour every 15 minutes to a max. of 200g/hour. I am getting Gammunex which is a 10% solution, takes about 4-5 hours/day. I pre-medicate with 2 Tylenol and 1 Benedryl.

      Exactly as the literature says, the benefits of IVIG are rather small for me. I am waiting to try Rituxan as soon as I find a neuro willing to order it and insurance willing to pay for it.

      I wonder if the titre of antiMAG IgM plays a role in how effective treatments are. Normal is < 1500. Mine is 140,000. I've seen numbers for some patients of over a million, 10 times mine. The reports I've seen claiming good success with Rituxan never mention the titre. Where are you getting your blood tests for antiMAG titre done? Are they confirming results with Western blot? Do you know what your numbers are?