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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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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Aaron | @joeyb09 | Aug 30 10:43am
In reply to @thecaptken153 "I was diagnosed with CIDP in 2022. Did weekly IVIG of Octagam and was back to..." + (show)
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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.

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I am in my 16th week on the Vyvgart and am starting to regress pretty rapidly. I held steady for the first couple of months but now it's getting pretty bad. I may end up back on the IVIG, myself.

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amkie | @amkie | Aug 31 7:13am

See your neurologist as soon as possible. Best regards.

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bhultquist12 | @bhultquist12 | Sep 2 4:54pm
In reply to @becsbuddy "@77smith77 WOW!!" + (show)
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@77smith77 WOW!!

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Congratulations. So happy to hear someone having success. Do you have CIDP or some derivative of CIDP? I've had mine for 14 years now, always a slow progression. I've tried just about everything available without success. IVIG gave me a horrible pulmony embolism and I was lucky to live through that. I use a walker while inside and an electric wheelchair for outside. No balance at all. Yours is one of the few success stories. Enjoy your new life-by the way, I'm 78.
Bill Hultquist

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med358 | @med358 | Sep 3 12:08pm

My neuro says I have CIDP. But now after infusions and 13 shots of hytrulo nothing has worked. Now they are questioning do I have CIDP or what ?

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betoma | @betoma | Sep 18 8:04am

vyvgart hytrulo has been advertised as a potential treatment for CIDP. Has anyone had any actual experience with this new drug, or has had a neurologist or doctor suggested as an option? Thanks.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 18 2:15pm
In reply to @betoma "vyvgart hytrulo has been advertised as a potential treatment for CIDP. Has anyone had any actual..." + (show)
Profile picture for betoma @betoma

vyvgart hytrulo has been advertised as a potential treatment for CIDP. Has anyone had any actual experience with this new drug, or has had a neurologist or doctor suggested as an option? Thanks.

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@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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davidjs | @davidjs | 5 days ago

Hi everyone,
I’m based in Ireland and was diagnosed with Anti-Neurofascin-155 antibody–positive CIDP (NF155+) after a very severe onset in late 2021. I had significant tremors, weakness, balance loss, and a long hospital stay. After treatment (including steroids, immunoglobin, plasma exchange i eventually went on to Rituximab. I've had multiple doses between 2021 and 2024. It holds for a period. I'm told that's all the treatment there is due to the rariety. Symptoms started shortly after my inital covid jabs in 2021.

I still experience intentional hand tremors, balance sensitivity, fatigue, sensory overload, and some residual autonomic issues—especially after viral infections or stressful periods. Serious balance issues, muscle loss. Went from bed to wheelchair to rollator to walking stick but still get panic/anxiety attacks also due to the autonomic issues. Hands are bad and can barely write.

NF155+ is rare, and I would really like to connect with anyone who:
• has NF155+ (or other paranodal/nodopathy autoimmune neuropathies)
• has been through a similar recovery path
• lives in Ireland or nearby (but international connections also very welcome)
• can share experiences, long-term outcomes, or coping strategies

It would really help to hear from others going through something similar. Thanks so much

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