Anyone on VYVGART Hytrulo, a new treatment for CIDP?

@bearmom Welcome to Mayo Clinic Connect! We’re glad to have you join us! Is there something specific that the members here can help you with?
May I ask, how you found Mayo Clinic Connect?

@becsbuddy I am looking for others with CIDP and arachnoid cysts. I am interested in talking to others about managing these conditions and everything that comes along with them; specifically weakness, fatigue, chronic pain, bladder issues and depression. I found this site by googling arachnoiditis I think.

@bearmom I came up with of members that you can ask your questions of. Hopefully, these members will join this conversation: @ankie @lucy1254 @reubenwithcidp @covidstinks @coachrandy @kgitti . You can also go to the home page for autoimmune disease's. There is a search bar where you can enter CIDP, hit enter, and a whole list of discussions will come up. Some discussions may be old, but CIDP never gets old.
Ask your questions on a discussion page and not in private messaging. Can you come up with a list of questions that will get the conversation going?

We have talked about it. I know his nurse would like it as she gets frustrated with how long it takes to find a good vein. He's a little wary of it but still considering it. His neuro PA is not opposed to a switch to Vyvgart but because he does so well with the IVIG infusions we're a bit worried about a switch. Don't want his legs to weaken. Thanks for your input.

I had posted on another thread about what I had been told by one of the nurses doing my infusion regarding Vyvgart. Take this with a grain of salt and do your own homework please but she said the pharma rep told her Vyvgart specifically targets one of the CIDP causes while IVIG is more broad spectrum and covers about six. Since nobody knows what causes any one persons CIDP you can't be sure that a switch would be of benefit. I'm staying with IVIG for now. I've been getting infusions for almost a year and a half now and it took about 11 months to see much improvement. It is not dramatic improvement for me but definitely an improvement. My veins are still pretty easy to stick, but I may need to move to a port at some point. Some people have said they prefer the port as it is quicker and easier.

Thanks for your input. It helps to hear from others about their experiences and opinions.

I was diagnosed with CIDP in 2022. Did weekly IVIG of Octagam and was back to almost normal in eight weeks. Stayed on Octagam till January of 2025 when I was switched to Privigen for insurance purposes. Asked my neurologist several months ago about Vyvgart Hytrulo after seeing an ad. Took several weeks to get approved for the prefilled syringe weekly self administered. Two weeks into the new Vyvgart Hytrulo, I started regressing. Had the doctor phone me and was told I needed to hang on and should see progress by the fourth shot. Took my fourth shot yesterday and have regressed severely. To the point I need assistance to walk to the bathroom. Put a call in to my neurologist yesterday and asked for a return call, nothing.
It’s now Saturday morning and can’t sleep. Decided that come Monday morning and if no signs of advancement, I’m going back to IVIG.
There is a nurse with CVS SPECIALY that’s over the Vyvgart and spoke to her in length yesterday. She pulled the file on Vyvgart and read where some patients in testing felt progress in four weeks but full progress is not until the 28 week. Then no more advancement after that.