Two Years of Vyvgart: Progress, Challenges, and Gratitude

When my neurologist first suggested Vyvgart, I was naive. I thought it would be a one-and-done treatment. It's easy to forget the true scope of Myasthenia Gravis (MG)—there’s a denial factor that comes with it. I think part of that is because the symptoms of MG can change from year to year, month to month, or even day to day.

MG and Vyvgart

Living with MG while on Vyvgart is not always easy. The disease is still there, and it’s not always what the commercials make it seem. I don’t have a yoga mat or go out to clubs or ball games. There’s no denying that the infusion schedule rules my life, but it’s also what’s keeping me stable and living without crises. For that, I’m grateful. I’m also incredibly thankful for my Vyvgart nurse, my neurologist, and my entire infusion team.

Two years and 12 rounds in

After 48 infusions, I feel like my experience might help others. I haven’t had any serious issues with Vyvgart or Myasthenia Gravis since I started. That said, I do experience side effects, and each infusion is a little different. The side effects can last anywhere from a day to four days, gradually decreasing in severity. I think the intensity depends on how I felt going into the infusion.

For me, the side effects are: headaches/migraines, feeling extremely cold for a few hours, a harsh cough and weak voice, and some muscle weakness. Usually, I go to bed shortly after the infusion with ice packs, aspirin, and a sleep mask to help with the discomfort.

Year one vs. year two

Year one was a learning year. I started with infusions every 96 days. Year two was about dialing it in. Now, my infusions are spaced at 56-day intervals. Everyone is different, so your infusion schedule might not look the same as mine.

What has changed

I no longer need Pyridostigmine. Vyvgart works well enough on its own for me. It was a hard transition, but eventually, I realized it was too much to keep taking both. There are days when I experience intermittent slurring or weakness, but I try to adjust and rest when that happens. A nap usually helps. I haven’t had ptosis (drooping eyelids) for over a year, and while my muscles sometimes feel weak, I don’t see ptosis when I look in the mirror. I remember when this was one of my most annoying symptoms! Double vision is gone, except for the week leading up to the next round of infusions. That’s also when I experience the worst weakness.

Tracking my daily life

My ADL scores are pretty consistent now. In the first year, my chart looked like a mountain range. Now, it’s a smooth, rolling line that climbs to a 7 a week before my next infusion. It took the entire first year to find a rhythm that helps keep my ADL scores low, with fewer highs before each infusion.

Does Vyvgart work?

For me, Vyvgart works. Maybe not as quickly as IVIG, and maybe not as well initially, but it catches up to the same potential. It could stop working for me at some point, but for now, it’s helping me live enough good days to forget how difficult Myasthenia Gravis can be.

What I’ve learned

I will never be who I once was, and that’s ok. I’m going to overdo it sometimes and feel bad for it. And that’s ok too. I absolutely need to keep track of my weekly ADL scores. Charting both my ADLs and side effects has been key. It helps me get a clearer picture of what’s really happening. I also track side effects after each infusion, which gives me even more insight into my experience. I apologize to those who commented on my first two Vyvgart posts and whom I haven’t responded to yet. I’ll do my best to reach out this year. Good luck to anyone who decides to try it.