Mary Beth‘s story

Hello, my name is Mary Beth, but my six grandkids all call me Gaga. I want to thank argenx for sponsoring me to share my story of living with anti-AChR antibody positive generalized myasthenia gravis (gMG) and taking VYVGART^® Hytrulo (efgartigimod alfa and hyaluronidase-qvfc). I am the eldest of seven children – six girls and a boy – and we are all very close.
Our parents passed away young. My father was 51 and my mother was 67, and their deaths brought us even closer.
I’m also a mom to two grown sons that I raised as a single mother. I was divorced when my children were toddlers. Once they were grown, I wanted to travel. One of my bucket list items was to visit all 50 states. Several of my sisters have the same goal, so we frequently take trips together to new states. My siblings and I also started taking a Sibling Trip every year   no spouses, no children, no grandchildren – just the magnificent seven. The seven of us were all born in nine and a half years, so someone is having a major birthday almost every year. The birthday sibling selects the location for each year’s trip. I’m also fortunate that among my siblings I have two sisters who are nurses. They came in handy back in 2018 when I first began my journey with gMG.

During my career, I worked in configuration management for defense contractors. So, as you can imagine, I am very detailed and organized. And I am a planner. These qualities were also helpful when I began experiencing gMG symptoms.

Of course, I did not plan on gMG. And it was definitely not on my bucket list. My symptoms began so subtly that I didn’t even realize they were there. The summer before my diagnosis, some of my colleagues at work asked what was wrong with my eye. I didn’t know what they were talking about, but when I looked in the mirror, I thought my eye was just inflamed. Not long after that, my youngest sister and I were having dinner and she commented on my drooping eyelid. When I looked at my eye, I noticed it right away. Of course, she called in reinforcements. Before I knew it, she had one of our “nurse sisters” on a video call. My RN sister took one look and told me to go see a neurologist right away.
Well, this is one of those cases when even though I’m the oldest, I had to obey my younger sisters!

On Monday, I tried to make an appointment with a neurologist, but an appointment was not available for another three weeks. My sisters recommended that I go to the ER, but I called my primary care physician and got in to see the physician’s assistant (PA) that afternoon. The PA saw my eye was swollen and prescribed some steroids. After the third day of steroids with no improvement, I called my ophthalmologist and went to see him. He said I needed a brain MRI. Again, I called my sisters, and they agreed that I should go to the ER. Before I hung up the phone, one of them was on the way to pick me up and take me!

In the ER I had a brain CT scan and an MRI. All tests were normal, which was a relief, but it still didn’t explain why my eyelid was drooping. I was admitted to the neuro observation unit and given medication to help improve muscle strength. When there was no change, I was discharged to follow up with my neurologist.

Three weeks later, I went to my neurologist. He examined me and looked at the CT scan and MRI reports. He questioned me about whether I had had any viruses or had been sick, but I had not. I was then referred to a neuroophthalmologist,
who told me I might have either myasthenia gravis or thyroid eye disease. He ran blood tests for both, and when I returned for a follow-up visit, he diagnosed me with anti-AChR antibody positive gMG. I was 64. Since I was not improving, my neurologist started me on a low dose of an immunosuppressant.

Now that I had a diagnosis, I realized that I had been experiencing other symptoms that may be related to my gMG, including weakness in my right leg, especially when I was trying to climb stairs. I also noticed that sometimes my voice would get hoarse unexpectedly when I was talking with my colleagues, and I didn’t understand what was happening.

For the next 18 months, I tried to educate myself about gMG. I joined a couple of social media groups to learn from other gMG patients. I liked my neurologist but since he didn’t specialize in gMG, he suggested that I find another neurologist who did. Again, I did my research and found a neurologist who was highly recommended by other people with gMG who I met in those social media groups. Together, my neurologist and I began to explore treatment options that would help improve my symptoms.

Around that time, my job became more stressful, so I met with my financial planner and decided to retire on January 23, 2020 – just before the COVID-19 pandemic shutdown. Once I retired, I tried to get more rest and reduce my stress in any way I could. I also took an active role in coordinating my healthcare among my specialists because, by the ripe age of 65, I had health issues beyond gMG. My attention to detail and organizational skills came in handy as I prepared for doctor’s appointments.

Under the care of my new neurologist, my eyelid droop improved, but my fatigue and leg weakness continued. I couldn’t walk long distances. My leg muscles were so weak that I couldn’t sit down on anything too low and get up by myself. I had to push myself up. I also experienced very low tolerance to heat, and if I was running errands there were times when I’d come home feeling extremely fatigued. Often, I’d sit down on my sofa and fall asleep. I felt the effects of my gMG every day and just didn’t feel like my normal self.

Then, in 2022 I read about VYVGART for IV infusion. On my next visit to my neurologist, I asked him about VYVGART. He explained that VYVGART is a prescription medication for adults used to treat anti-AChR antibody positive generalized myasthenia gravis (gMG). My neurologist told me that the most common side effects of VYVGART are respiratory tract infection, headache, and urinary tract infection (UTI). He also told me that VYVGART may increase the risk of infection, asked if I had a history of infections, and said to let him know right away of any symptoms of an infection during treatment with VYVGART. He shared that VYVGART can cause allergic reactions such as rashes, swelling under the skin, and shortness of breath and that VYVGART may also increase the risk of serious allergic reactions such as trouble breathing and decrease in blood pressure leading to fainting, as well as infusion-related reactions including increase in blood pressure, chills, shivering, and chest, abdominal, and back pain.

After talking it over with me, my neurologist decided to prescribe VYVGART in addition to my current gMG treatment. I wasn’t a big fan of IV infusions because they are very difficult to get started in my veins. Sometimes it took the nurses multiple attempts to get the IVs going, but I was determined to do whatever I could to improve my gMG symptoms. I started my second treatment cycle of VYVGART infusions in November 2022 and finished right before Christmas. That holiday, I went to my eldest son’s home to spend Christmas with him, my daughter-in-law, and their three children. The day after Christmas, my son and daughter-in-law took the two older grandkids snow skiing for five days while I babysat my 14-month-old grandson. I was thrilled to spend so much time with my youngest grandchild, and one of my sisters came and stayed with us to provide backup which I was the first to admit that I needed. As it turns out, a toddler is a lot of work for two mature babysitters!

Of course, as Gaga, I found my way to really bond with that sweet little boy. I worked puzzles, read books, and played cars with him. We had a wonderful time. On New Year’s Eve, I was able to babysit three of my grandchildren. After I returned home, I went grocery shopping and ran errands. It was a busy couple of weeks and afterwards I realized that my ability to do these activities had improved. I felt that VYVGART, along with my other treatments, was working for me! When the sibling trip to Maine arrived in June of 2023, my siblings noticed I was doing much better, too.

When first I learned about VYVGART Hytrulo, I was very interested in switching because of my difficult veins. Of course, I read all I could about VYVGART Hytrulo and I brought it up to my neurologist. He agreed that it could be a good fit for me. My doctor told me that the overall safety of VYVGART Hytrulo was consistent with the safety profile of VYVGART for IV infusion, except VYVGART Hytrulo can cause injection site reactions.

In October 2023, I switched from VYVGART for IV infusion to VYVGART Hytrulo in addition to my current gMG treatment. My injections are done at a nearbyinfusion center by a trained nurse once a week for four weeks, per treatment cycle. Each injection takes about 30 to 90 seconds, plus a 30-minute observation period. After four injections, or each treatment cycle, I work with my neurologist to determine when I need an additional treatment cycle based on my symptoms and any side effects I may have. When I do start another treatment cycle, I wait at least four weeks from the last injection of the previous treatment cycle and track my symptoms and side effects with my doctor. Four to five weeks in between treatment cycles works best for me. I do get injection site rashes after my injections. Of course, this is my experience, and everyone is different.

It’s so important to advocate for yourself and not compromise when it comes to your health.

Initially, when I was on VYVGART for IV infusion, I spoke with a My VYVGART Path Nurse Case manager during each treatment cycle. Now she calls every few cycles and it’s just nice to know that I can reach out to her if I have questions. I’m also fortunate to live in an area where excellent healthcare facilities are available. Over time, I’ve found a doctor who really listens to my needs and is a true collaborator in my healthcare. It’s so important to advocate for yourself and not compromise when it comes to your health.

I feel my gMG symptoms continue to improve on VVYGART Hytrulo plus my current gMG treatment. After my injections, I can go grocery shopping and run a few errands. I’m not as exhausted when I get home like I used to be. I still get tired, so I get sleep when I can and try to manage that. I still can’t walk long distances or sit in low seats. Sometimes if I’ve read a lot at night, my eyes get tired and blurry, but I don’t have the eyelid drooping as much anymore. I continue to live independently and take care of my home with the help of a housekeeper every two weeks. And best of all, I get to travel to see my sons and grandchildren and spend important holidays with them!

Today, I feel more confident about planning trips and making plans to do things as long as I don’t schedule activities back-to-back. I build in a day of rest when I get back or have a couch day, I can do that.

Remember that bucket list I previously mentioned? Shortly after my six-year gMG diagnosis anniversary, I will have visited all 50 states. In 2023, I took a big trip out west for 12 days with two of my sisters. I’ve never been able to do that! We didn’t schedule anything for too early in the morning. My sisters did all the driving, and the trip worked out great. I was able to participate in many of the activities and we checked off six states from our list: North Dakota, South Dakota, Montana, Idaho, Wyoming, and Nebraska. Then in October 2024, three of my sisters and I checked off the final state: Hawaii! It was a wonderful trip! Now I’m onto other items on my bucket list, including attending the annual Gingerbread House Display in Asheville, NC and returning to some of my favorite places in the U.S. to spend more time.

Although life with gMG is not a destination that I planned to visit, I am determined to do everything I can to manage my symptoms and keep living my life and checking off milestones.

My journey with gMG was definitely not on my bucket list, but it is one I have traveled with the help of my healthcare team and my family – especially those nurse sisters! It is so important to advocate for yourself or find a friend or family member to help you along the way.

Although life with gMG is not a destination that I planned to visit, I am determined to do everything I can to manage my symptoms and keep living my life and checking off milestones. And with six grandkids, Gaga still has a lot of milestones to check! Thank you.