If Anyone Is On Vyvgart Or Ultomiris Can You Please Share Experiences Wit Us.
had 2nd infusion. experienced pain going from behind my ears down my jawline. took benadryl and it helped. vision got really off.
In going again tomorrow and hope all goes well.
Hi Koby
I've been on Vyvgart infusión since 10/22. fiesta round of Vyvgart went well, got good relief from symptoms most days. My first year on Vyvgart, I was on 60 days between infusión. That was'nt working after one year, so I was changed to every 30 days between infusión cycles. Started in 10/23. Now its May 24', and I will be requesting my Neuro Dr to change my frequency to everybother week infusión, as Im having symptoms returning about 20 days into the infusion rest cycle. As with most drugs I have used for my health issues over my lifetime. They dont last very long, or they need to be increased in milligrams. or freaquency.
that my Vyvgart story so far!
I just had my first infusion of Vyvgart on Monday. And Tuesday I had more energy than I've had for some time. I did all my exercises and put together a new chair (I hate "Assembly Required.) I'm getting PT and she was surprised how well I did my exercises. However, on Wednesday I felt very weak. It's my first infusion and I have three more each Monday. I'll let you know how that goes. IVIG didn't do a thing for my mobility so my neurologist switched me to Vyvgart. Life is good.
I use Vyvgadt Hytrulo. I get wiped out and headaches day of infusions. Im four on, four off right now. Just starting my third round next week. So far the second round wore off about a week before I start this next one on Tuesday. I also get rashes at the infusion site, but they go away after the 4 weeks is over.
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