How VYVGART helped reduce my gMG symptoms

My father had the worst luck, but the best attitude. He told me, “If all you see on a bad day is a flower, it was a good day.” And I’ve always held on to that sentiment.

My parents came from a farming and fishing community in Cape Breton, an island off the coast of Nova Scotia. We weren’t wealthy, but we were happy and had what we needed. My father’s hopeful outlook helped shape an ideal 1950s childhood of dancing, reading, and even developing trade skills like carpentry. And that hope has stayed with me throughout my life, especially during my gMG diagnosis.

It's difficult to pinpoint exactly when my gMG symptoms started. Looking back at photos from grade school, I noticed my eyes didn’t open wide. But I didn’t think anything of it at the time. I also remember feeling generally tired but just thinking it was due to my active lifestyle. Now I wonder if some of that was because of gMG: Were my droopy eyelids a gMG symptom? Was my muscle fatigue a gMG symptom?

The first experience that really alarmed me was in 2018 when I was preparing a litter of puppies to go to their “forever homes.” As much as I loved caring for them, it was very tiring. I wanted to take naps and when I wasn’t able to, my speech would start slurring. To make matters worse, I was scared to eat because I was also having a hard time swallowing. A nurse who picked up one of the puppies thought I was having a stroke and recommended I go to the ER. After days at the hospital with doctors evaluating my condition, I asked to see a speech specialist since my symptoms were mainly around my throat. Once that specialist spoke with the doctors, my anti-AChR antibody positive gMG diagnosis was confirmed.

While I was on my initial treatments for gMG, my doctor told me about VYVGART for IV infusion. I wanted to take it as soon as I could. Before I was prescribed, my doctor told me that the most common side effects are respiratory tract infection, headache, and urinary tract infection. During my first treatment cycle, the nurse said she could see a difference, and so could I. My eyes could finally open up wider. Then, I noticed an improvement in my ability to walk and use my arms. But the biggest triumph was I could comfortably eat a meal!

Working with my doctor has helped determine a treatment plan based on my symptoms. I get 1 treatment a week for 4 weeks, with a break between cycles that works for me. I track my symptoms with the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale every week to help recognize my results, particularly in symptoms related to my throat and muscles. It also helps me share progress with my healthcare team and it really makes me think: Are things going steadily? Have my symptoms gotten worse or better? It's a particularly great tool to share with my doctor. My experience with VYVGART has generally been wonderful, and I see that in my MG-ADL scores.

Today, gMG is something I have to keep in mind, but I can fill my days with some activities I enjoy, like cooking meals from scratch, taking Tai Chi classes, and spending time with my dogs.

For me, VYVGART has renewed my hope and helps manage some of my symptoms that I experience in my everyday life. I encourage others in the gMG community to talk to their doctor about how to manage their unique symptoms in a way that works for them. Everyone has different experiences and deserves to be heard. I wish for others in the gMG community to hold on to my father’s message of hope, so they, too, can find the flowers in the bad days.

AChR=acetylcholine receptor; ER=emergency room; gMG=generalized myasthenia gravis; IV=intravenous; MG-ADL=Myasthenia Gravis Activities of Daily Living