Reply To: Experience with first Vyvgart treatment – is this normal?

[Community Member]

Henry — as a direct answer to your question, and taking my own experience into account, the answer is YES! As of this coming March, I will have been on Vyvgart infusions (sounds like you’re getting the Hytrulo form) for one year. I get the infusions, once a week for 4 weeks, every 2 1/2 months or so. More or less spot on according to the Vyvgart website.

There are times when I notice a drastic improvement in my speech and fatigue level by that evening…of the first dose! This stuff is amazing — expensive, but amazing.

I also realize that things can change over time with MG. Before Vyvgart, I had spent about 2 years on IVIG and it started out great. I then had to gradually introduce prednisone as a support for the IVIG. Then, like you, I had to increase the frequency to the point where my neurologist and I needed to go down a different path. Enter Vyvgart.

I’ve since weaned completely off the prednisone (boy, my knees miss that stuff 😉 and the only ‘support’ med I take on a daily basis is Imuran. As time goes by, I start to take Mestinon as needed until we realize it’s just time for the next round of Vyvgart. My understanding (please correct me if I’m wrong) the Vyvgart Hytrulo is, in essence, the same dose that I’m getting via IV. Your slow-push injection takes just a few minutes; my IV takes 50 mins.

My hope for you (and for me 😉 is that this stuff is the real thing for as long as it takes to find a cure for MG. You need something positive like this in your life. You’ve really been through the wringer.

Thank you, Henry, for your service.