Improving Quality of Life in MG: Targeted Symptom Management Strategies

Key Takeaways:

• 80 percent of patients surveyed in the 2024 MG In America Study reported fatigue as the most common MG symptom, closely followed by muscle weakness.
• 2 out of 3 people with MG experience eye symptoms, according to the 2024 MG In America Study.
• 39 percent of patients surveyed in the 2024 MG In America Study listed difficulty chewing and/or swallowing as a symptom.
• Other medicines beyond AChEs should be considered to reduce side effects.
• Targeted adjunctive strategies, including energy conservation, tailored therapies for speech and swallowing, and optical aids, can significantly improve fatigue, bulbar symptoms, and ocular manifestations.
• A multidisciplinary approach involving neurologists, physical therapists, speech-language pathologists, and ophthalmologists is crucial for comprehensive symptom management in MG.

While anti-cholinesterase inhibitors (AChEs) like pyridostigmine (Mestinon®) are often the first-line treatment for managing symptoms of myasthenia gravis (MG), they do not address all symptoms effectively in all patients. And their effectiveness can wane over time or with disease progression.^1,2

Our patient data found that many people have experienced distressing side effects while being on Mestinon:

"[My doctor] put me on Mestinon, and it helped me within about 45 minutes, but the cramping was a big problem."

"I’ve seen and heard many comments about the side effects some people tend to have with Mestinon. I think it’s pretty common that these side effects can cause a lot of distress."

For patients with MG, persistent fatigue, swallowing and speech difficulties, and visual impairments can significantly impact their daily lives. Therefore, proactively implementing adjunctive strategies targeting these specific symptoms is crucial for optimizing their functional capacity and overall well-being.³

Consider other drugs beyond anticholinesterase inhibitors

While AChEs address MG symptoms, other therapies may be a better option for your patient.

"I am fortunate that my MG symptoms during flare-ups eventually go into remission when I take enough prednisone."

"I started Mestinon the week after I was diagnosed with MG and following my first MG crisis. Then, a month later, I started prednisone and CellCept (2000 mg per day: 1000 mg morning and 1000 mg night)."

"I have been on CellCept for 2 and a half years since my myasthenia gravis (MG) diagnosis."

Consider the following as alternatives to AChEs:^4,5

• C5 protein inhibitors – Ravulizumab (Ultimiris®)
• Complement inhibitors – Eculizumab (Soliris®)
• Corticosteroids – Prednisone
• FcRn blocker – Nipocalimab-aahu (IMAAVY™)
• Immunosuppressants – Azathioprine (Imuran®), cyclosporine (Neoral®), mycophenolate (Cellcept®)
• Intravenous Immunoglobulin (IVIg) and plasmapheresis (Plasma Exchange - PLEX)

Non-pharmacological symptom management

Beyond medication, patients with MG should consider lifestyle changes to help ease their MG symptoms. Here are some ways to support them in making these shifts:⁶

Managing fatigue

According to the 2024 MG In America Study, about 80 percent of MG patients report debilitating fatigue. Even everyday tasks like bathing and doing laundry can be draining and difficult for people living with MG:

"When we are struggling with MG symptoms, bathing can be difficult. If you tire easily, try resting before bathing. I almost always bathe right after rising in the morning. That way, I’m fully rested, I am usually much stronger, and I generally have much less pain. I allow myself a lot of time to bathe. I probably take about twice the time I used to take, but this way I do not have to rush through it."

"My symptoms began getting more severe. My legs and arms gradually lost strength. One day, I found I could not turn on the washing machine!"

Consider the following, in addition to medicine and other therapies, to help manage patient fatigue:⁶

• Energy conservation – Educate patients on techniques like pacing activities, prioritizing tasks, and scheduling regular rest periods.
• Graded exercise – Encourage tailored, moderate-intensity exercise programs guided by a physical therapist to gradually improve stamina.
• Staying cool – Heat can make MG symptoms worse, so encourage patients to have cooling strategies (for example, keeping a cooling towel in the fridge) at the ready.
• Identify and treat comorbidities – Always evaluate for other contributing factors to fatigue, such as sleep disorders, depression, and medication side effects.

Managing dysphagia and dysarthria

The 2024 MG In America Study reveals that 39 percent listed difficulty chewing and/or swallowing as a symptom. Bulbar muscle weakness can lead to dysphagia and dysarthria, increasing aspiration risk, nutritional deficiencies, and hindering communication, as these MG patients can attest:

"Since 2021, my MG has evolved to a form informally termed 'bulbar MG,' where my symptoms during flare-ups are ptosis (eyelid drooping), dysarthria (difficulty speaking), dysphagia (difficulty swallowing), and muscle weakness."

"Chewing food was impossible, and swallowing was difficult, too. Lost 8kg in weight in a matter of 10 weeks."

"I was rapidly losing weight because of my swallowing issues, so [my doctor] recommended I see a dietitian. The dietitian suggested that I try the Mediterranean diet, which prioritizes vegetables, nuts, seeds, legumes, fruits, and fish, and a low amount of red meat. Due to my problems swallowing, she recommended that I drink smoothies and eat soft foods packed with healthy fats, such as avocados."

Consider a referral to a speech-language pathologist (SLP) for additional patient support. Other key interventions can include:^6,7

• Swallowing therapy – SLPs can teach strategies like chin tucks and recommend appropriate food consistencies to improve swallowing safety. Muscle strengthening exercises may also be beneficial.
• Speech therapy – SLPs can provide techniques to enhance articulation, voice volume, and speech rate, potentially utilizing pacing boards or communication devices when needed.
• Nutritional support – MG patients who have difficulty chewing and swallowing may not be getting adequate nutrition. Preparing foods that make them softer and easier to chew and swallow can ensure patients are getting the right vitamins and nutrients they need. Consider referring them to a nutritionist for added support.

Managing ocular symptoms

According to the 2024 MG In America Study, 2 out of 3 people with MG experience eye symptoms. Diplopia and ptosis are frequent complaints that impact vision and daily function:

"My symptoms included intermittent eye drooping, vision changes that progressed from blurry vision to overlapping and then double vision, along with abnormal eye movements."

"When the pandemic began in early 2020, I woke up one morning with diplopia (double vision). Fearing a stroke, I raced to the emergency room (ER). Unable to confirm anything, the ER doctors referred me to a neurologist who, 2 months later, verified my late-onset ocular myasthenia gravis."

"Both my eyes were almost closed, especially the left one & I lost vision in it. Eyes were blurred, double vision, cross-eyed, and very dizzy for almost 13 weeks." 

While systemic immunosuppression often helps, local strategies can offer immediate relief:⁸

• Prisms – Incorporating prisms into eyeglasses can realign the visual axes, alleviating diplopia and improving binocular vision.
• Eye patching – Alternating eye patches can eliminate diplopia by blocking vision in 1 eye, particularly useful when prisms are not effective.
• Ptosis crutches – These attachments to eyeglasses can mechanically lift the upper eyelid, improving the field of vision.
• Surgery – In persistent, bothersome ptosis, surgical options may be considered, but patient selection and realistic expectations are crucial given the fluctuating nature of MG.

A multidisciplinary approach to treatment

Optimizing the care of MG patients requires a proactive approach to managing specific symptoms beyond relying solely on AChEs. By incorporating energy conservation strategies, tailored exercise, speech and swallowing therapy, and optical aids, it is possible to improve patients’ functional abilities and enhance their quality of life.^1,3-6