VYVGART?
I started Vivgart infusions on May 5, 2025 and I’m still taking 10 mg Prednisone & 2,000 mg mycophenolate per day. Pyridostigmine is as needed and take about 1 x per month - just when I have stress.
Stresses happen when I’m involved with intense conversation.
I start second round of VYVGART July 8.
Nurse said most see relief at 9 treatments.
Is anyone else doing it?
Symptoms: shortness of breath, weak right eye muscles (normally no droop), clumsy gait, tiredness.
I just started my second round this month (July). Going for my third injection this Wednesday. I find that it can burn a bit, so I rub on some lidocaine in the area if injection (either side of the navel) about an hour before. It seems to help a lot.
I will.
One of the side effects is a rash around the injection site.
I did have that week before last. Lasted for about 4 days then reoccurred last week for 1 day.
It was similar to heat rash. Didn’t itch no other reactions. Just rash.
Initially, after the first two injections I felt great! Like I’d come out of a black hole.
The past 5 weeks haven’t had the same high and the feeling is kind of one of stableness, neither high nor low.
Waiting for the better.
Thanks for your post. I am considering Vyvgart and tracking the progress of others. Please keep posting as your treatment continues.
