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.

ginger3344 | @ginger3344 | Jan 21 12:29pm

In reply to @amkie "How very interesting that they might not allow it." + (show)

hope it works for you! i'am supposed to start it soon, keep us posted.

thomhorowitz | @thomhorowitz | Jan 22 2:20pm

Per Shaket vs Transamerica. Appel must be heard by a sub specialist of the same certification as the prescribing Dr.

kgitti | @kgitti | Jan 22 3:50pm

In reply to @thomhorowitz "Per Shaket vs Transamerica. Appel must be heard by a sub specialist of the same certification..." + (show)

Could you please give some background on your post. It looks important but it’s kind of off the wall.

thomhorowitz | @thomhorowitz | Jan 22 11:51pm

Medicare denied a service after review by a physician with different training. Judge ruled that the review must be true peers. Our local Medicare medical director who is an endocrinologist and was reviewing coverage of neurooncologist. Way out of his ball park. I reminded him of this case and he got a second opinion from a neurologist and the treatment was approved

kgitti | @kgitti | Jan 23 11:55am

In reply to @thomhorowitz "Medicare denied a service after review by a physician with different training. Judge ruled that the..." + (show)

Thank you!

kgitti | @kgitti | Jan 23 12:11pm

I’ve decided to stay with my Hizentra SCIG for now as it just works.

All, ongoing physical therapy is key to improvement. Find a pt who has experience with MS (the pt is similar and finding someone with CIDP experience is almost impossible) and work to pushing your pain and exhaustion thresholds. It has worked very well for me. I do it weekly. For pain management my doc prescribes 1/2 a hydrocondone-acetaminophen 5-325 before each session. I have progressed from needing daily afternoon naps to only needing to sit for 20 minutes when the fatigue overwhelms me.