Anyone on VYVGART Hytrulo, a new treatment for CIDP?

Hi,

Yeah I asked about it they said its very expensive However,
Can you share with us whats the advantages of it in compare to retuxan ?and did it really will help ?

Did the neurologist explain any further information because I notice little data except the website of the treatment page .

Hopfully the insurance can cover it in near future

Sorry all I know is what I posted.
My Dr.s’ reading of the studies suggests to her that it may be the best drug currently available. It’s not an “off label” use of an existing drug but actually targeted for CIDP which is a first.

Has anyone had the new CIDP treatment with Vyvgart infusion or shot and if so how is it working?? my current 3 month infusions with Rituxan is working better than the IVIG did, but it seems to have slowed or not much progress after 7 months.

I am interested in hearing from anyone who is trying this new drug, Vyvgart Hytrulo. How is it going?

@amkie, I moved your question to this related discussion so you can connect with @kgitti
- VYVGART Hytrulo, a new treatment for CIDP? https://connect.mayoclinic.org/discussion/vyvgart-hytrulo-a-new-treatment-for-cidp/

@amkie, has Vyvgart Hytrulo been recommended for you?

Well, it is under consideration. I am currently on IVIG monthy.

I’m currently on a weekly self-administered SCIG Hizentra, but always interested in a better quality of life.

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.

I believe @77smith77 may have experience with Vyvgart Hytrulo for treating myasthenia gravis.

Thank you.