Connect
Anyone on VYVGART Hytrulo, a new treatment for CIDP?
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-adultsShe 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.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
You have nothing to lose by trying it! I developed a rash from the injection site one time, but that was the only side effect.
-
Like -
Helpful -
Hug
1 ReactionThere are flair ups. I’m experiencing one now.
-
Like -
Helpful -
Hug
1 ReactionYes! After one week I have started to feel new and better sensations and more energy!
You have to wait 6 months after your last Rutaxan to wash out your system of it. Rutuxan was not good to me at all and the six month wait was awful!
Next shot is monday I'll keep you all posted.
-
Like -
Helpful -
Hug
1 ReactionGreat! Yes please keep us posted.
Is your insurance covering it?
-
Like -
Helpful -
Hug
2 ReactionsHow did you get diagnosis? I kept pushing neurologist to do a nerve biopsy but two docs don[t think I have this type of neuropathy so no vygart for me. I was hoping that I did so I could take this med. There is no treatment for the rest of us. But good for you!!
-
Like -
Helpful -
Hug
2 ReactionsThis is the first positive response I have seen. I belong to several forums and everyone has been getting worse. I put a hold on starting because I was scared. I failed at IVIG, scig, steroids and plex.
-
Like -
Helpful -
Hug
1 ReactionYes , medicare and AARP united health care took care of it all
Gene
-
Like -
Helpful -
Hug
1 ReactionI was on vyvgart for 4 weeks and in those four weeks went from weak to weeker in my legs, my CIDP symptoms flared up dramatically. I lost the ability to walk, my vision doubled and my hands became numb and I was unable to hold anything.
I ended up in the hospital getting Mega doses of IVIG over a 5-day period. I am now in Post Acute learning to walk all over again and hopefully we'll get to use my hands to hold things with little feeling. My eye muscles were weakened and my ophthalmologist said that my eye muscles are the most delicate of our muscles. He also said that two things are working together to keep the eyes from having double vision, Fusion and the eye muscle. The eye muscle this weekend greatly because of the medicine and maybe some cognitive issues as well. So for me, the new medicine affected me negatively in multiple ways. I have been taken off of the vivgart and him back on the immunoglobin that I was on prior to starting the Vyvgart.
Learning to walk all over again and regain my balance along with my eyesight you're not something that I wanted to do at 70. I wish I could give some positive feedback because I really was hoping that the new medicine would mean Better Health, but the exact opposite happened. So I would just say to anyone who is thinking of using this new medicine to research the ingredients carefully to make sure you don't have an allergic reaction and end up with the same muscular, neomuscular challenges that I have right now. I hope this helps.
-
Like -
Helpful -
Hug
1 ReactionSo sorry this happened to you.
I have CIDP and some of the same symptoms you have.
It’s no fun and I’m hoping my nee infusions of Rituxan help me.
I know after dealing with my bad balance issues, feet that are so numb I can’t feel them, numbness in my hand, and eye issues,I’m ready to try anything that might help me.
Hoping you find help soon.
My Neurologist said i have CIDP tried ivig only bad rash over whole body. Has anyone tried
Vyvgart Hytrulo for CIDP intersested in patient results.