Anyone on VYVGART Hytrulo, a new treatment for CIDP?

Posted by kgitti @kgitti, Jul 19, 2024

I just came from my neurologist and learned about VYVGART Hytrulo. It is a newly approved immuno suppressant option for chronic inflammatory demyelinating polyneuropathy (CIDP). https://vyvgart.com/vyvgarthytrulo-cidp

https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-chronic-inflammatory-demyelinating-polyneuropathy-cidp-adults

She said it will be really expensive and a battle to get my insurance to pay for it but it looks promising. My insurance pays for SCIG Hyzentra 100% thanks to her. So maybe she can pull it off.

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I have been on Vyvgart Hytrulo almost 6 months with mild improvement. I’ve had upper respiratory and sinus infections this winter, but not sure if that is a side effect or just from all the gunk my granddaughters bring to me from daycare. Having issues getting the prescription filled again (a story in itself), so will have missed 2 doses as of tomorrow. Had quite a burst of energy and easier to get up and stand last week, but am tired and weak now, so maybe helping more than I thought. This is kind of a last-ditch attempt for improvement for me. I’m now 64, was diagnosed by Dr. Dyck at Mayo in 2003 as a “dirty CISP” after sural and spinal nerve biopsies in addition to all the other testing after searching for 5 years to figure out why my feet and legs were tingling and going numb and I was having trouble walking. Because of the significant damage done in those 5 years he was not optimistic but not hopeless either. My disease has progressed to a full-blown CIDP diagnosis now. Am now in a wheelchair secondary to a leg fracture and subsequent muscle weakness and wanted to try the Vyvgart to see if I could regain enough proximal strength to get back to using a walker. My neurologist in Missouri was very willing to help me give it a try and the intent is for me to be on it a full year before we make any final decisions about continuing it.

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