Anyone on VYVGART Hytrulo, a new treatment for CIDP?

Good luck!

I was diagnosed with CIDP about 5 months ago. In my case it’s thought to be related to MGUS, a very early form of Multiple Myeloma. My neurologist worked with my oncologist to get my insurance to approve Vyvgart Hytrulo. A nurse comes to my house once a week, to administer subQ and I’ve had 9 doses. Some days I feel like I’m seeing improvement, then other days the pain is unbearable. My neurologist feels there’s a slight improvement in muscle strength but it could be a long road, that I’m willing to travel. I know how lucky I am to be able to receive this medication. For the most part I’m able to continue with daily tasks, just lack endurance. I’ll report back with progress.

I hope Vyvgart works...I have had ICDP since my first coved vaccine. I tried the IVIG for as year and had some improvement, the doctor changed the brand I had 44 of and was improving slowly, but the different brad really set me. back. So now I have had 3 go rounds of rituxan and it did little or made me even a bit worse, and lowered my immune system so they had to put of the Vyvgart for 5 months now. Looks good though for me to start the Vyvgart next week,, seems like the last and best shot!

Also did you have any negative reactions from the Vyvgart.
A side note: Hoping JFK JR. dose a lot of cleaning up those places, I reported my reaction to the CDC 2 times and never got a response, just a file number. A good friend of mine was almost paralyzed from his 3 vaccine of covid and went on a ventilator. After five infusions in Two weeks he went home,,,If i would have heard from someone or some agency sooner ,instead of my friend , I probably would have been better two years sooner!.

Please give an update. I sure hope it helps you. I have not decided what to do. I continue to improve slowly on IVIG. I am considering switching to Hizentra because of the self administration aspect and the fact that we spend a lot of time away from home. I am hopeful about Vyvgart Hytrulo though and hope a self administration option is coming along the pipeline soon. They say it is.

@bunny0412 Welcome to Mayo Clinic Connect! Have you talked with your doctor about the uncontrollable pain you are having? Does the doctor think that the VYVGART will help?

For me the good IVIG was named GAMMAKED i improved a lot then the octagam that the Doctor changed two caused me to get worse and I Lost some vision in my right eye!
I'll up date after I start, i'm praying!
Gene

I now have a spinal stimulator implanted in my back it has reduced the pain by at least 90%