How a Veteran with Generalized Myasthenia Gravis is Living with the Rare Autoimmune Disease

(BPT) – This content was sponsored by argenx. Tom is a real patient who was on treatment when he shared his personal experiences. Individual results may vary. Tom Hopkins served with the Marine Corps in Vietnam as a young man. However, he faced the toughest battle of his life in the summer of 2020 shortly after he turned 80. Fatigue and weakness caused by a rare autoimmune disorder called anti-acetylcholine receptor (anti-AChR) antibody positive generalized myasthenia gravis (gMG) left him with debilitating symptoms. But in June of 2022, Tom experienced a positive transformation. He took back some control of his life, and he’s now able to keep up with his grandkids. “I am able to enjoy my life once again, enjoy the little things,” said Tom, and his family is pleased to see his symptom improvement which allows him to be more present in their daily lives. Living with Generalized Myasthenia Gravis After Tom served in Vietnam and retired from the Marine Corps, he lived his version of the American dream, building a successful career in the insurance industry. In his early sixties, Tom was getting ready for a well-deserved retirement. But his outlook changed in 2003, when he was diagnosed with anti-AChR gMG.gMG is unpredictable, and everyone’s experience is unique. Tom and his family were able to manage his symptoms for almost 20 years. Then, suddenly, in the summer of 2020, Tom’s life took a sudden turn for the worse. In a matter of months, Tom went from spending time with his grandkids to feeling depressed and very sick. “I had a hard time eating,” said Tom. “It was difficult to swallow and breathe. I had double vision and felt extremely fatigued. I couldn’t make it through a shower without needing rest, and I had to take breaks on the way back from going to the bathroom. On top of that, I lost over 30 pounds over an 18-month period.” “My life became extremely small,” Tom recalls of that period when his gMG symptoms put him on the sidelines. Tom had to give up his usual routine and activities, like volunteering, going to veteran meet ups, even joining in family meals or calling his daughter. “We couldn’t have a conversation,” said his daughter due to impairment of his speech as a result of worsening symptoms. What is Generalized Myasthenia Gravis?According to the Myasthenia Gravis Foundation of America, generalized myasthenia gravis is a rare and often debilitating autoimmune disorder that leads to severe muscle weakness, including difficulty speaking, swallowing, and eventually even breathing.1 Roughly 50,000 Americans live with gMG, and the most common gMG serotype is anti-AChR antibody positive gMG which accounts for about ~85% of all diagnoses.1Adding VYVGART® After declining over 18 months, Tom and his family saw a brochure about a medicine called VYVGART® (efgartigimod alfa-fcab). VYVGART is approved in the U.S. for the treatment of generalized myasthenia gravis (gMG) in adult patients who are anti-AChR antibody positive. Before receiving treatment, Tom’s condition was severely limiting his daily life, and he was unable to do the things he loves. In June of 2022, Tom started feeling some improvements after his first cycle with VYVGART paired with his other gMG treatment. Tom’s decision to take VYVGART came after consulting with his doctor. They advised that the most common side effects of VYVGART are respiratory tract infection, headache, and urinary tract infection. While Tom did not experience any side effects, individual results vary. “Now that my gMG symptoms are being treated, I am able to get back to doing more of my daily activities — seeing my grandchildren’s volleyball matches and playing with them again means the world to me,” said Tom. With VYVGART treatment, Tom has happily returned to some of his independent activities, like taking daily walks and drives. He also started to enjoy food again, and rejoined his wife at the dinner table for family meals. Over the holidays, Tom was able to celebrate with extended family members. Now that Tom is able to better manage his symptoms, he’s gained enough strength to be more like himself again. Tom loves spending time with his grandchildren and watching them play sports. Around Veteran’s Day, he speaks to local schools about his experiences in the Vietnam War. Tom and his wife recently celebrated their 60th wedding anniversary, still very much in love. Thanks to his improved symptoms, Tom is making the most of his golden years despite the effects of gMG. Talk to your doctor about treatment options and any questions you have about anti-AChR antibody positive gMG. You can learn more about VYVGART here. Important Safety Information2 What is the most important information I should know about VYVGART® (efgartigimod alfa-fcab)? VYVGART may cause serious side effects, including: Infection. VYVGART may increase the risk of infection. In a clinical study, the most common infections were urinary tract and respiratory tract infections. More patients on VYVGART vs placebo had below normal levels for white blood cell counts, lymphocyte counts, and neutrophil counts. The majority of infections and blood side effects were mild to moderate in severity. Your health care provider should check you for infections before starting treatment, during treatment, and after treatment with VYVGART. Tell your health care provider if you have any history of infections. Tell your health care provider right away if you have signs or symptoms of an infection during treatment with VYVGART such as fever, chills, frequent and/or painful urination, cough, pain and blockage of nasal passages/sinus, wheezing, shortness of breath, fatigue, sore throat, excess phlegm, nasal discharge, back pain, and/or chest pain. Undesirable immune reactions (hypersensitivity reactions). VYVGART can cause the immune system to have undesirable reactions such as rashes, swelling under the skin, and shortness of breath. In clinical studies, the reactions were mild or moderate and occurred within 1 hour to 3 weeks of administration, and the reactions did not lead to VYVGART discontinuation. Your health care provider should monitor you during and after treatment and discontinue VYVGART if needed. Tell your health care provider immediately about any undesirable reactions. Before taking VYVGART, tell your health care provider about all of your medical conditions, including if you: Have a history of infection or you think you have an infection Have received or are scheduled to receive a vaccine (immunization). Discuss with your health care provider whether you need to receive age-appropriate immunizations before initiation of a new treatment cycle with VYVGART. The use of vaccines during VYVGART treatment has not been studied, and the safety with live or live-attenuated vaccines is unknown. Administration of live or live-attenuated vaccines is not recommended during treatment with VYVGART. Are pregnant or plan to become pregnant and are breastfeeding or plan to breastfeed. Tell your health care provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. What are the common side effects of VYVGART? The most common side effects of VYVGART are respiratory tract infection, headache, and urinary tract infection. These are not all the possible side effects of VYVGART. Call your doctor for medical advice about side effects. You may report side effects to the US Food and Drug Administration at 1-800-FDA-1088. What is VYVGART? VYVGART is a prescription medicine used to treat a condition called generalized myasthenia gravis, which causes muscles to tire and weaken easily throughout the body, in adults who are positive for antibodies directed toward a protein called acetylcholine receptor (anti-AChR antibody positive). Please see the full Prescribing Information for VYVGART and talk to your doctor.     References MG Quick Facts. Myasthenia Gravis Foundation of America. (n.d.). Retrieved April 21, 2023, from https://myasthenia.org/MG-Education/MG-Quick-Facts. About Vyvgart: VYVGART (efgartigimod alfa-fcab) VYVGART.com (n.d.). Retrieved April 21, 2023, from https://www.argenx.com/product/vyvgart-prescribing-information.pdf.