REAL STORIES:
Robin’s gMG story

Finding hope

Robin had a tough time after her diagnosis with anti-AChR antibody-positive gMG. Finding a treatment that works for her has given her hope and a new appreciation for the little things in life.

Robin’s story

My town has a “no hurries, no worries” feel to it, and I was able to enjoy that carefree way of living for many years not yet knowing that difficult news and the hardship of living with a chronic illness were coming my way.

Experiencing symptoms

In 2005, during my second pregnancy, I experienced my first symptoms of generalized Myasthenia Gravis (gMG). I had extreme muscle fatigue and terrible migraines. The fatigue was easy to blame on the pregnancy initially, and then on caring for a newborn, but then it began to take a horrific toll on my well-being, and I knew something wasn’t right. I saw lots of doctors, tried over 7 different medicines, and was even treated for high blood pressure and TMJ—but my symptoms didn’t go away. Then, when I started getting double vision and had trouble reading the computer screen, I was referred to a neurologist. We reviewed my history and I explained to him that there were even times when my hands would tire from the simple task of digging in my purse for keys.

Being diagnosed

That day, in 2006, my neurologist decided to test me for gMG, and the results came back positive. I remember getting that phone call, and while I felt relieved to have a diagnosis and my symptoms validated, I was also scared. I immediately thought about my family: How would I be able to take care of my children? Would I be able to take care of myself? What would the future hold?

I often say that my daughter and my son were raised by 2 different moms—one before gMG and one after. For the first 10 years of my daughter’s life, I was physically active each and every day. I could play outside with her for hours, go on bike rides, and push her on the swing set.

But everything changed when I was diagnosed, shortly after my son was born. I couldn’t clean the house, fold the laundry, or even stir a pot. I couldn’t play with him, or even go to his soccer games. I call that version of myself a “sit down Mom.” No amount of rest from the muscle fatigue/weakness was ever enough.

I have an incurable disease and as my symptoms—the increased muscle fatigue and the inability to use my arm muscles—worsened, I was constantly filled with worry about the future. Living with gMG is a challenge, and in my small town, where nobody else has gMG and nobody has even heard of it, I felt very lonely and extremely isolated.

Finding hope

In 2013, I decided to reach out to others in the gMG community through social media. While I have never met these individuals in person, they have been a tremendous source of support and inspiration, and I even consider a few among my closest friends.

In 2014, I had a follow-up appointment with a neurologist. He informed me about a clinical trial for a medication for anti-AChR antibody-positive gMG adult patients. I knew right away that if I was able to participate, I would give it a try. I was selected and moved forward with my meningococcal vaccinations 2 weeks prior to starting SOLIRIS treatment. My doctor explained to me that SOLIRIS increases my chance of getting serious and life-threatening meningococcal infections.

Meningococcal infections have occurred in patients taking SOLIRIS and may quickly become life-threatening and cause death if not recognized and treated early. My doctor explained that meningococcal vaccines reduce the risk of meningococcal infection but do not prevent all meningococcal infections. I was advised to call my doctor or get emergency medical care right away if I get any signs and symptoms of a meningococcal infection like headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, or if my eyes are sensitive to light.

I drove 2 hours each way to get the infusions every week for 4 weeks. After my fifth infusion, I went every other week. It was a long trip, but worth the effort. I was willing to do anything to have the chance to see some improvement in my gMG symptoms.

Seeing improvement with SOLIRIS

A few months after beginning the trial, I saw a change in my gMG symptoms. I could begin to take care of myself and my family again. I was able to gain back some of my independence. In addition to being able to do household chores and errands, I can volunteer at my gym’s childcare facility, and even go to the gym from time to time.

In October of 2017, the treatment I had been on as part of the clinical trial for 4 years was approved by the FDA and was called SOLIRIS. My family celebrated like it was Christmas. Now, I have my SOLIRIS IV infusion administered at home every other week by my infusion nurse. It takes 35 minutes. Serious infusion-related reactions can happen during SOLIRIS infusions. I know to tell my doctor or nurse right away if I get any of these symptoms during a SOLIRIS infusion: chest pain; trouble breathing or shortness of breath; swelling of the face, tongue, or throat; or feeling faint or passing out. My doctor told me that if I have an infusion-related reaction to SOLIRIS we may need to infuse SOLIRIS more slowly, or stop SOLIRIS. In addition to my home infusion nurse, I also work with my OneSource™ team, who have helped me with my insurance and are always available to answer any of my gMG questions.

Living with anti-AChR antibody-positive gMG and SOLIRIS

Today, I am able to take care of myself. You can’t appreciate being able to wash and dry your own hair, polish your own toenails, or even shave your own legs until it is something that you can’t do alone. I am able to take care of my children and participate in their lives by helping with their homework, cooking family dinners, and going to their sporting events. I am so excited to be able to go to the Friday night football games and cheer for my team. I am now the same mom for both my children—involved and engaged. It may not be the same life I had before my diagnosis, but I am living life.