• Ivig Treatment

    Posted by Leanne on July 17, 2024 at 4:04 pm

    After being on Plasmapheris for over 30 years I found it exhausting and my anxiety was through the roof as having both arms cannulated and not able to use the bathroom, I would always wet my pants. Having to take a change of clothes every treatment and unable to stand after the treatment. I gave IVIG a go. No side effects so far and I think it holding my Myasthenia to some degree. I have monthly treatments in a comfortable chair with many other patients. Take my iPad in to watch a movie and able to use the bathroom as only one arm cannulated and can take the pole with me. My anxiety about going in for treatment is almost zero and to me that’s what’s important.

    Bambilin replied 6 months, 1 week ago 6 Members · 5 Replies
  • 5 Replies
  • linney

    Member
    July 22, 2024 at 8:18 am

    That must feel so good. I to get ivig, every 28 days. I was dx in 2023 and it’s been incredible for me.

  • Ari Maayan

    Member
    July 24, 2024 at 3:56 pm

    I have been doing IV/IG for about 6 years or more. It’s helped me a lot. I occasionally get a bit nauseous but not bad and not for long.

  • John

    Member
    July 24, 2024 at 6:23 pm

    I have been on monthly IVIg treatments since 2022, along with Pyridostigmine 60mg every 6 hours. This combination has worked pretty well for me so far. My Dr and I are trying to avoid anything that weakens my immune system.

  • kenneth j. bialkowski

    Member
    July 26, 2024 at 9:22 am

    I have subcutaneous infusion of Cuvitru (Immuglobin) once weekly – 190 ml. i do it myself. i no longer need to go to the hospital. it has largely kept my symptoms in check. i still take 10 mg Prednisone daily.

  • Bambilin

    Member
    July 26, 2024 at 2:18 pm

    I’m glad IVIG working for you. I thought it was a miracle drug when I first took it for a year while Mycophenelate was taking effect. I also take prednisone and mestinon. After weaning off of IVIG I had a 3-4 good years. This past year I’ve gone down hill a lot. My previous neurologist tried Vyvgart infusions. But after 6, my IgG level was only 143 (low normal was in the high 600s). When he said he no other options, I found a new neurologist and am on IVIG once more. However, she doesn’t want to give it to me long term. So she increased my Mycophenelate which will take a couple of months to work. Then perhaps I can wean off of IVIG.

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