Finding the right VYVGART dosing cycle for me

I grew up on a family farm, and that’s where my strong work ethic came from. I was used to having chores to do at dawn before school every day, and I carried that with me into my dual careers in nursing and the Army Reserves. I chose this path because of my lifelong determination to work hard, be responsible for myself and for others, and keep up an active lifestyle.

This began to change in 2017 when I started having difficulty chewing and trouble with my vision. These symptoms are what led to my diagnosis of generalized myasthenia gravis (gMG) a few months later. I began seeing a neurologist, and I tried a few treatments before landing on VYVGART for IV infusion. Before I got started, my doctor let me know that I might have some side effects. Part of getting started with VYVGART was understanding how dosing works and working with my doctor to figure out how long my personalized break would be before my next cycle.

For readers who may not know, here’s how dosing works for VYVGART for IV infusion: For each treatment cycle you’ll receive 4 treatments—1 treatment each week for 4 weeks in a row. After that, you take a break of at least 4 weeks before starting your next treatment cycle. You and your doctor work together to keep track of your symptoms. When they start to return, it’s time to talk to your doctor about starting your next cycle.*

I like that the break between VYVGART treatment cycles can be personalized to me. Right now, I’m on a quarterly schedule, which means that after each 4-week treatment cycle, I have a break of about 8 weeks, which my doctor may adjust based on my symptoms and side effects. But, of course, everyone’s symptoms are different, and different people may need different lengths of time between treatment cycles. Sometimes, a break may be a set amount of time like mine, and sometimes it may vary instead.

One of the things that’s really helped me is tracking my symptoms with the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale. If you haven’t heard of it, it’s a scale where you rate your gMG symptoms based on how you’re feeling. There are 8 common signs and symptoms on the scale, and you put a score to each. If you’re not experiencing a particular symptom at all, it’s a 0. When a symptom is at its most severe, it’s a 3.

I track my own MG-ADL score once a week. By looking at my scores, I get a better sense of how I’m doing with my gMG management and personalized breaks between treatment cycles. I also think it’s important to share this information with my doctor. That’s because symptom tracking helps your doctor determine when to start your next treatment cycle.

Right now, my treatment cycles are on a consistent schedule. But if my symptoms were to start flaring up during my break between treatment cycles, my MG-ADL score would also help me spot that. I’d be able to see my scores starting to go up, and use those scores to talk to my doctor about planning my next treatment cycle—and maybe even adjusting my breaks between treatment cycles as needed in the future.

Overall, I feel good about how my VYVGART cycles have been working. My treatment cycle is flexible enough that I can always schedule my infusion appointments for Wednesdays. That’s my “me” day, and I like knowing that I can plan my treatments around the other things happening in my life.

With VYVGART I have been able to manage my gMG symptoms well. As I get older, my hope is to keep doing some of the things that I love. And with personalized breaks between treatment cycles, I know I’ll have options if my symptoms ever start showing up more frequently between cycles.