REAL STORIES:
Michael’s gMG story

Exploring his options

Frustrating gMG symptoms meant Michael needed to talk to his doctor about treatment options available for him.

Michael’s story

For most of my life, I had been an active, outgoing, fun-loving co-worker, friend, and husband. But my diagnosis of generalized Myasthenia Gravis (gMG) changed all of that. In February of 2010, my first symptoms became noticeable as I began to struggle slightly with my speech. I was having trouble getting the words out of my mouth and, when I could talk, people were having difficulty understanding me. At the time, I worked as a cashier and greeting people was a regular part of my day, so not being able to communicate clearly was frustrating. I also began to struggle with my activity level and remember going on a short jog that left me very out of breath.

Finding answers

I first sought help from an allergist in hopes of clearing up any congestion. Although my pin test came back completely normal, I started on some allergy medications. I believed I saw a hint of success as my speech problems were intermittent, but nothing was ever fully resolved. Next, I sought treatment from an ear, nose, and throat specialist and had a nasal endoscopy to evaluate my sinus passages. Then, I started seeing a speech therapist who, after a few months, knew this was not a speech problem. I also turned to my rheumatologist, as I also have lupus.

Finally, in May 2011, I went to a neurology specialist. I had yet to find a doctor who knew how to help me, so I remember thinking, “What can this lady do for me?” I actually blew off the first 2 appointments, and when I went to cancel my third appointment, the receptionist said, “Cancel 3 times and you’re done.” Thankfully, that was just what I needed to hear to make me keep my appointment. That day, the neurologist diagnosed me with gMG. I saw my neurologist weekly and followed a treatment regimen. I was relieved to have a diagnosis and to finally know what I was suffering from; however, I still struggled to manage my gMG symptoms.

Continuing to struggle

In March 2015, I hit an all-time low point. I was constantly missing work, was unable to communicate, and didn’t have the energy to get myself ready in the morning. Those were very difficult years as I felt completely isolated and pushed many loved ones away. I felt defeated and thought nobody else could understand what I was going through. gMG impacted my job, put stress on my marriage, and distanced me from my family and friends. Where I had once been the energetic life of the party, I now retreated to my basement, where I found an escape playing video games. I was not the extroverted Michael that those close to me had grown to know and love. One of my lowest moments was when I experienced so much muscle weakness that my wife found me lying on our kitchen floor. She has been my rock, my provider, my constant support, and for her to see me so helpless was upsetting, to say the least.

Starting SOLIRIS

My gMG symptoms were worsening, so my neurologist sent me to see a specialist. Based on my medical history, and because my gMG was anti-AChR antibody positive, I was asked to participate in a clinical trial for SOLIRIS. At that point, I felt like I had nothing to lose, so I started the trial in 2015. First, I had the meningococcal vaccinations. My doctor explained to me that SOLIRIS increases my chance of getting serious and life-threatening meningococcal infections. Meningococcal infections have occurred with 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. Two weeks later, I would get my infusion. Only later did I learn I was on the placebo part of the trial, not the actual drug.

In January 2016, I started the open-label trial and was actually on SOLIRIS. In 3 months, I started to see results—my talking improved, and I did not need the rest periods due to muscle fatigue/weakness that I had come to expect.

For SOLIRIS, the most common side effect reported for gMG in the trials was muscle and joint (musculoskeletal) pain. I would encourage you to talk to your physician. After the initial 5 weeks of treatment, I continue to get my IV infusions at home every other week by my infusion nurse. My OneSource™ team helps me work with my insurance company. I am on commercial insurance, and my SOLIRIS is covered under my insurance.

There are things that gMG took away from me that I will never get back—not being able to smile on my wedding day (to this day I only like the way I look in 30 of the 900 wedding pictures), not always being able to kiss my wife, and not being able to communicate with my father, who died of cancer. But today I am returning to what is important to me and what makes me who I am. At work, I am energized by my conversations with both my colleagues and my customers.