Has anyone tried Vyvgart for CIDP?

Posted by stackisk @stackisk, Sep 15 10:19am

Has anyone tried Vyvgart for CIDP? Looking to switch this out in replacement of my bi-weekly IVIG infusions.
Ty

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

I think there’s specific guidance with respect to this new treatment and whether it would be helpful as an option for CIDP. I’m not aware that this is something you’d just try. I’d like to see medical professional guidance on this or from the GBS CIDP FI medical advisory board.

REPLY
@cgrogers

I think there’s specific guidance with respect to this new treatment and whether it would be helpful as an option for CIDP. I’m not aware that this is something you’d just try. I’d like to see medical professional guidance on this or from the GBS CIDP FI medical advisory board.

Jump to this post

Of course one would consult a specialist, but in my experience they want and expect my input and consent. This person is just seeking data from people that may have experience with this drug. Everyone is different we know. That does not mean you can't or do not want to hear of other's experience.

REPLY
@mom2204

What is GBS CIDP FI?
B MILLS MSN

Jump to this post

GBS Guillane-Barre Syndrome.
CIDP - Is Chronic Inflamatory Demylenating Polyneuropathy.

REPLY
@cgrogers

I think there’s specific guidance with respect to this new treatment and whether it would be helpful as an option for CIDP. I’m not aware that this is something you’d just try. I’d like to see medical professional guidance on this or from the GBS CIDP FI medical advisory board.

Jump to this post

I made a post about it months ago after my neurologist brought it up to me. It is recently FDA approved. It has jumped thru all the hoops. My neurologist brought it up to me recently as an alternative to the Hizentra SCIG I have been on weekly for 3 years. I have not “tried” the new Vyvgart as yet as I am waiting to hear from others experiences.
The FDA approval:
https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-chronic-inflammatory-demyelinating-polyneuropathy-cidp-adults

REPLY
@kgitti

I made a post about it months ago after my neurologist brought it up to me. It is recently FDA approved. It has jumped thru all the hoops. My neurologist brought it up to me recently as an alternative to the Hizentra SCIG I have been on weekly for 3 years. I have not “tried” the new Vyvgart as yet as I am waiting to hear from others experiences.
The FDA approval:
https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-chronic-inflammatory-demyelinating-polyneuropathy-cidp-adults

Jump to this post

Please keep us posted if you hear from others who have tried it

REPLY
@mom2204

What is GBS CIDP FI?
B MILLS MSN

Jump to this post

It’s an international support org for people with GBS or CIDP. Google them. Many helpful resources.

REPLY
Please sign in or register to post a reply.