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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Profile picture for Colleen Young, Connect Director @colleenyoung

@betoma, I moved your question about Vyvgart Hytrulo as a treatment for chronic inflammatory demyelinating polyneuropathy (CIDP) to this existing discussion so you can read about the experiences others have had and connect with them.

- Anyone on VYVGART Hytrulo, a new treatment for CIDP?: https://connect.mayoclinic.org/discussion/vyvgart-hytrulo-a-new-treatment-for-cidp/

Is this medication an option for you?

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@colleenyoung ive had cipd for over 12 years tried everything but plasma exchange .started vygart 7 weeks ago 4 weeks on 4 off and best my legs and feet have been for years

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Profile picture for amkie @amkie

As I mentioned in one comment I am on monthly IVIG which works OK during winter months in FL. 6 months of the year we live in Canada north of the Minnesotan border. Finding a provider would be the same challenge for Vyvgart as there is no self administration available at this point however there may be in the near future. My condition came on rapidly with a fair amount of confounding factors but with a Guillain-Barre type onset. I was hospitalized at that time and stated on IVIG. I had trials of poorly tolerated steroids along the way. I can never directly associate my improvement with treatment but I did stop getting worse. I have steadily but very slowly been improving. Starting with very poor balance, bil footdrop and weakness in lower legs were hallmarks of what I was and am dealing with I have gone from using a Rollator walker 100% of the time to a single prong cane and now, in my home I can move around frequently without aids during my good periods.
I have considered Hizentra because of the self administer aspect and our travel pattern It is basically the same type of treatment as IVIG. Vyvgart it a new drug. Totally different concept. I am on "The Path" and have my very nice nurse assigned to me, but have not decided whether to try it or not yet. My most recent EMG and Sensory studies show slight worsening of neuropathy. Although at the time of the test only like 2 weeks ago, I did feel that way, right now I feel stronger and better then I did then and probably the best I have felt since onset. This disease is so mind bending. I might add that I work at getting stronger and improving balance every single day, many times per day. I do aquatic therapy and ride an adult trike and walk with trekking poles outdoors. Vyvgart is a big decision though and is so new. Good study results. I am looking to communicate with a person who is on it.

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@amkie i am on it everything but plasma exchange for cidp 8 weeks in and legs and feet are better than they have been for years

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