Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis What is your IVIG regimen?

  • What is your IVIG regimen?

    Posted by price-wooldridge on July 12, 2023 at 7:00 am

    Recently I changed my IVIG routine and it feels good!

    Previously I was doing Gammagard, 45 grams a day over 2 days for a total of 90 grams. My maximum flow rate was 150 ml/hr. I was spending about 4 hours a day over two days.

    With a change of neurologist, new orders and a new infusion routine have followed.

    Now I’m in the third month doing a dose based on my weight in kg of Gamunex-C. I have been weighing about 105 kg, so I’m using the accepted dosing of 1 gram/kg of body weight, I’m getting 105 grams of immunoglobulin now. We also now do the entire infusion in one day and my maximum flow rate is now 300ml/hr. I emphasize these are “my” parameters and they may not be appropriate for everyone. How you get your IVIG is between you and your ordering physician. But, it’s been working for me! I’m now done in a single four-and-a-half-hour infusion. This is SO MUCH BETTER.

    Do you do IVIG? And what is your routine? How effective is it for you?

    price-wooldridge replied 8 months, 2 weeks ago 2 Members · 2 Replies
  • 2 Replies
  • wanda-grischkowsky

    July 28, 2023 at 6:48 pm

    Previously I was getting Privigen a total of 120 grams over 2 days. The max rate was too much for me. Currently my dose has increased to 160 grams over 3 days with a rate of 98. We have tried increasing my rate but it causes my blood pressure to become dangerously high as well as worsening side effects.
    A three-day infusion is hard.

    • price-wooldridge

      July 28, 2023 at 7:38 pm

      Oh yes, I completely agree you have to run a rate you can tolerate. Whatever it takes, if it is working for you, that’s what you do.

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