Why my doctor and I chose VYVGART for IV infusion

I was in my car at a red light when the double vision hit. Nothing could have prepared me for the shock and terror of being behind the wheel of a car and realizing that I couldn’t rely on my eyes. I knew right away that I needed help, and I was willing to try anything.

I’m no stranger to working through challenges in my life. I was a military wife for 17 years before my first husband and I separated. When that happened, I knew it was up to me to support my family, so I worked my way up from a secretary in the government to a mechanical engineering technician. I eventually remarried, and my second husband and I did everything together. He was my best friend, and my work made me happy and confident in ways I hadn’t felt before. But when he passed away suddenly in 2015, I really struggled to find purpose in my life without him. Eventually, I found that purpose in an unexpected way: working with other grieving families in my community who are going through a loss like the one I experienced.

So when the double vision started, I knew it was another challenge to face head-on. Unfortunately, the symptoms in my eyes progressed to the rest of my body. I had muscle fatigue, a weakened voice, and general fatigue. I had to stop doing many of the things I loved, like sewing, watching TV, reading, and attending events and activities with my friends and family. I was couch-ridden. I was sad. I felt like I had lost my purpose again.

My primary care doctor ran a bunch of blood tests, including an antibody test, and diagnosed me with anti-AChR antibody positive gMG. My symptoms were still severe, but I felt a sense of relief because I knew what was causing them and I could take action. I was ready to try anything to reduce my symptoms. She referred me to a general neurologist who prescribed me a few medications. The first medication he prescribed didn’t help me, and the side effects actually made me feel much worse. The next medication he prescribed me didn’t have bad side effects, but I didn’t feel any symptom improvement. At that point, the relief I felt from being diagnosed was gone, and I was starting to feel hopeless.

I was referred to a neurologist who is a gMG specialist, and he shared the same feelings I had about how bad my symptoms had become. I was extremely weak and had to walk using a cane. That was on top of my gMG symptoms that were already making it difficult to live my life. We talked over the effects of the previous medications and what my options were for other treatments. By the end of that discussion, my neurologist and I both decided it was worth it to try an additional treatment.

That’s when he recommended VYVGART for IV infusion. I was a little apprehensive of starting an additional treatment that wouldn’t give me the results I wanted, but I decided the risk was worth it once we took the time to weigh the potential benefits and side effects. He told me the most common side effects are respiratory tract infection, headache, and urinary tract infection.

I’ve been on VYVGART for IV infusion for 2 and a half years. After the first treatment cycle, my muscle fatigue lessened, and my voice got stronger. By the second cycle, I was able to start doing things I hadn’t been able to do for a while, like cooking for myself, making the bed, taking out the trash, and reading. And after the third cycle, I was able to make plans to go out and spend meaningful time with my family and friends again. Even though I’m still not able to sew, I’m teaching 2 of my granddaughters to sew, and I really treasure spending this time with them.

Tracking my symptoms during my treatment journey has helped me. The Myasthenia Gravis Activities of Daily Living (MG-ADL) scale assesses the impact of gMG on daily functions by measuring 8 signs or symptoms that are commonly affected in gMG. I use it to see when my score starts to rise, so I know when it’s time to talk to my doctor about starting my next treatment cycle.* I also track them during my cycle, because if I see the numbers go down, it gives my confidence a boost.

I’ve been through a lot in my life, but I always find a way to do whatever it takes to improve my circumstances. I weighed my options with VYVGART for IV infusion, and it has worked out for me. I encourage others in the gMG community to remember that you are your own best judge of how you feel. It’s okay to say, “I’m not doing as well as I want to, and I need to talk to my doctor about trying an additional treament.”

*The safety of starting the next treatment cycle sooner than 4 weeks from the last treatment of the previous treatment cycle has not been established.
AChR=acetylcholine receptor; gMG=generalized myasthenia gravis; IV=intravenous; MG-ADL=Myasthenia Gravis Activities of Daily Living.