← Return to Anyone on VYVGART Hytrulo, a new treatment for CIDP?

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@thecaptken153 how scary. I am sorry you experienced that.There does appear to be some differences in how MG patients do on infusions versus the self injectable. Were you on Vyvgart infusions or something else? For MG the infusions were originally dosed at 4 weeks on 4 weeks off. Over the course of 2 years, I had difficulty after the last of the 4 week cycle. Went to 2 on 2 off finally landing at weekly. So when they got FDA approval for Hytrulo (vyvgart) I was thrilled as it showed they had tested weekly dosing making me and my neuro confident in more frequent dosing. Here’s a list of all the auto immune diseases it is being tested for. I have not looked at how CIDP works, my only experience being my 56 yo daughter was mistakenly dx’d with it some 30 yrs ago. She subsequently likely has a muscular dystrophy genetic disease. I am seronegative , in other words , do not test positive for the antibody. I know it works in many MG cases and not so in others. WE are called snowflakes. We are all different!!! In so many ways. It appears many of the new drugs are being cross tested amongst other auto immune diseases. I saw the original post and thought I would share my experience. I wish you well and hope you are able to find a treatment that gives you good health.

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@theresaag
I’ve been on weekly IVIG for almost four years. Started with Octagam then Jan this year switched to Privigen. 450 ml per infusion. It keeps me at a normal level like nothing is wrong. Switched to Vyvgard in June under the supervision of CVS who handles the medication plus an online nurse from Argena that phoned often. With both CVS and the case worker, when I started failing and had questions, they didn’t have answers for me the case worker nurse actually told me she wasn’t allowed to answer. So in three weeks I went from fully normal to wheelchair bound and using a bedpan. I lost 22 pounds