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Medicare and IVIG
I have gMG and have been receiving IVIG infusions for the past 11 years. It works well for me. The last 3 years Part D of Medicare has paid for the medicine and infusions.
My neurologist just told me that Medicare sees IVIG as a “rescue” drug, not a “maintenance” drug, and has frequently kicked patients off of it. Has anyone else on Medicare had problems with this?
Also, if I do have to get off of IVIG, which of the newer drugs are working well for you? Thanks.
Robert
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8 Replies
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Robert, I received a notice from my Medicare Advantage plan last month that my Gammunex IVIG treatments that I have been receiving monthly for 2 years since diagnosed (and have been working well) needed to be changed to Gammagard IVIG effective this month and in 2025. Research indicates both are immunoglobulins and very similar. I’m assuming Gammagard is less expensive hence the change mandated by my Medicare Advantage insurance plan. I will have to see if the IVIG is re-approved for 2026 in a year. It’s not very reassuring to know that the treatment that is effective for my MG may or may not be approved year-to-year. I also take Pyridostigmine (Mestinon). This combination regulates my MG pretty well. I am a 67 year old male, and onset of MG was at 65
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John, thanks for your response. I’ve actually been on three different IVIG products over 11 years, including the two that you mentioned. One caused me to break out with a rash, but all three knocked down my symptoms equally. I don’t think you will see any difference going to Gammagard.
Yes, it’s traumatic enough to deal with the disease, without having to worry about being able to stay on a medication that works for you from year to year.
Best of luck to you!
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Hello robert and everyone in this group. I was diagnosed MG back in march 2023. My AchR-ab score was 28 before a thymectomy. Then after a bulbar crisis, I was treated with IVIG for 5 days every 3 months or so. I have being improved and my last infusion was last week after 5 months. My AchR-ab score is going down … right now it is 16 nmol/l (43% reduction rate)… it looks like IVIG not only helps to improve overall condition but it actually reduces production of AchR-ab…(I found a note on this from a MG medical paper)…keep in mind, as you sure know, IVIG does not work the same for everyone…
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Best of luck to you, Angel.
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I had 2 IVIG infusions last year and they didn’t do anything, so my doctor recommended Vyvgart. The first round (1 infusion a week for 4 weeks) made me feel GREAT but the second round of infusions didn’t last. The first round I had in September, and was to undergo second round in late December. But by early December I was winding down, getting weaker and weaker with MG symptoms. Second round ended the second week of January and about 2 weeks after, effects wore off. Was on Pyridostigmine following both infusions. I’ve been on Ultomiris since April and receive 1 infusion every 8 weeks. I have been doing a lot better on the Ultomiris. I just hope it continues.
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I hope Ultimaris continues to work well for you!
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I was diagnosed with seronegative mg and nothing worked for me except ivig octagam. I hope they won’t kick me off it because there isn’t anything else for seronegative mg😮
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I hope both of us can stay on IVIG. It’s worked great for me, too.
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