You may have heard of myasthenia gravis. If you watch TV, you may also have heard of Vyvgart® (efgartigimod alfa-fcab), a new infused treatment for the disease. But how much do you know about myasthenia gravis (MG)?
What is Myasthenia gravis?
Myasthenia gravis is a chronic autoimmune neuromuscular disorder. An autoimmune disease occurs when the body’s immune system mistakenly attacks its healthy cells, tissues, and organs. The immune system usually protects the body from harmful substances like viruses, bacteria, and toxins.
However, in autoimmune diseases, the immune system cannot distinguish between foreign invaders and the body’s cells, producing antibodies that attack healthy tissues. In MG, the body’s immune system mistakenly attacks and destroys the transmission of signals from the nervous system to the muscles, disrupting muscle contraction and movement.
MG most commonly affects the muscles controlling eye and eyelid movement, facial expressions, chewing, talking, and swallowing. In some cases, it can affect breathing muscles. The main symptom is muscle weakness that worsens with activity and improves with rest. Common symptoms include:
- Drooping eyelids (ptosis)
- Double vision (diplopia)
- Difficulty speaking, chewing, and swallowing
- Weakness in arms, hands, fingers, legs, and neck.
MG can affect people of any age, but it’s more common in women under 40 and men over 60. Some notable public figures who have had the disease are actor Karl Malden, known for his roles in films such as “A Streetcar Named Desire” and “On the Waterfront,” as well as the TV series “The Streets of San Francisco.” Malden’s struggle with myasthenia gravis was less publicized, but it significantly impacted his health later in life.
Renowned British actor Laurence Olivier is known for his Shakespearean roles and numerous awards, including an Oscar and several Emmys. Later in life, Olivier struggled with myasthenia gravis, which affected his speech, facial muscles, and coordination, but he continued to act and adapt his performances to manage his symptoms.
As of 2021, approximately 82,715 adults in the United States live with myasthenia gravis, translating to about 320.2 cases per million adults. This estimate reflects the increasing prevalence of this rare autoimmune disorder affecting the neuromuscular synapse.
Early signs and symptoms
MG can have both sudden and gradual onset. Typically, the onset of MG is gradual, developing over weeks or months. However, it can also arise suddenly in some cases, making it challenging for doctors to diagnose until the disease has progressed significantly.
Symptoms of MG can include:
- Drooping of one or both eyelids (ptosis)
- Blurred or double vision (diplopia)
- Difficulty swallowing (dysphagia)
- Changes in facial expressions or difficulty making facial expressions
- Impaired or slurred speech (dysarthria)
- Muscle weakness and fatigue, especially in the face, neck, and limbs
- Difficulty chewing
- Shortness of breath
- Trouble walking or weakness in the arms, hands, fingers, and legs
- Difficulty moving the neck or holding up the head
These symptoms often worsen with activity and improve with rest. They may fluctuate in intensity throughout the day, typically less severe in the morning after a full night’s sleep and worsening as the day progresses. It’s important to note that myasthenia gravis can be sudden onset, and symptoms may not be immediately recognized as the condition. If you experience persistent muscle weakness or any of these symptoms, it’s advisable to consult a healthcare professional for proper evaluation and diagnosis.
Living with Myasthenia gravis
Myasthenia gravis is a complex condition that requires ongoing medical management. Still, with early detection and proper treatment, most people with myasthenia gravis can significantly improve their muscle strength and lead everyday or near-normal lives.
- When MG, combining medication with lifestyle adjustments is crucial for optimal symptom control and quality of life. Here are some key recommendations:
- Take medications as prescribed, using alarms or schedules to maintain regular intervals.
- Plan activities around medication timing, and doing more strenuous tasks when muscle strength is at its peak.
- Adjust daily routines to conserve energy, such as breaking housework into smaller tasks with rest periods in between.
- Use assistive devices like carts or electric appliances to reduce physical exertion.
Physical therapy and regular exercise are also important:
- Engage in appropriate exercise to help control weight and maintain overall health. Options include walking, swimming, cycling, or gentle yoga.
- Work with a physical therapist to develop a tailored exercise program that doesn’t overexert muscles.
- Listen to your body and stop to rest if you experience fatigue or breathing difficulties.
- Exercise in moderate temperatures, as extreme heat or cold can exacerbate symptoms.
- Consider taking pyridostigmine before exercise and splitting workouts into shorter segments that engage different muscle groups.
Dietary recommendations and managing fatigue:
- Eat smaller, more frequent meals to avoid fatigue associated with large meals.
- Choose foods that are easy to chew and swallow, such as ground meats or mashed vegetables.
- Opt for warm rather than hot meals, as heat can aggravate MG symptoms.
- Stay hydrated and sip cold drinks during meals to aid swallowing.
- Incorporate rest periods throughout the day and pace activities to manage fatigue.
- Maintain a healthy, balanced diet rich in potassium and calcium, while limiting sodium, fat, and cholesterol intake.
- Consider working with a dietician to develop a nutrition plan that addresses any swallowing difficulties.
By combining these lifestyle adjustments with proper medication management, individuals with MG can better control their symptoms and improve their overall quality of life. Working closely with healthcare providers to tailor these recommendations to individual needs and symptoms is important.
While there is no cure for MG, treatments are available to manage symptoms and improve muscle function. These may include medications, thymectomy (surgical removal of the thymus gland), and other therapies.
Vyvgart Infusion Treatment for MG
Most recently, Vyvgart (efgartigimod alfa-fcab), a newer biologic therapy administered via IV infusions, has been made available.
In simple terms, Vyvgart works by reducing the levels of harmful antibodies in the body that attack the communication between nerves and muscles, leading to the symptoms of MG.
Vyvgart contains an active ingredient called efgartigimod alfa, an antibody fragment. This fragment specifically targets and blocks a receptor in the body known as the neonatal Fc receptor (FcRn). By blocking this receptor, Vyvgart reduces the amount of immunoglobulin G (IgG) antibodies, including the harmful acetylcholine receptor (AChR) antibodies that contribute to the muscle weakness seen in MG patients.
Patients typically receive Vyvgart in treatment cycles, with one weekly treatment for four weeks, followed by a break. The timing of subsequent treatment cycles is individualized based on the patient’s symptoms and response to the medication.
Also available is VYVGART® Hytrulo, a subcutaneous injection. It is also administered every four weeks, and patients must be observed by a physician for 30 minutes after the injection. VYVGART Hytrulo had a higher incidence of injection site reactions, including rash, erythema (redness), pruritus (itching), bruising, pain, and urticaria (hives), which were mild to moderate and resolved over time
Twelve Stone Infusion Centers
Vyvgart infusion typically lasts around 60 minutes, so it’s essential to have a comfortable experience. At TwelveStone, our patients relax in a spacious suite with snacks and Wi-Fi. Certified techs work with other patient care team members to ensure they have just what’s needed. We deal with the insurance company and work to make sure our clients pay as little as possible out of pocket.
For those who choose to receive Vyvgart infusions in the comfort of their homes, TwelveStone-certified techs will come to them to administer infusion treatments safely and comfortably.
At present, there is no cure for MG. But with proper treatment and lifestyle, patients are living longer and healthier lives—and TwelveStone is here to help.
