Your MG Patients' Top Questions: Practical Answers for Your Practice

Key Takeaways:

• Nearly half of people with myasthenia gravis got at least 1 wrong diagnosis before being told they had MG.
• Pain and muscle weakness are 2 of the most common symptoms among our MG patients, with one MG patient saying, "I have weakness and a lot of pain over most of my body. All this hinders me, causes me great anguish, and stress. It can be rather depressing, too."
• 64 percent of MG patients say they actively seek out information about the latest treatments.
• Anticipating and addressing common patient questions about diagnosis, treatment, prognosis, and daily life is crucial for effective myasthenia gravis management.
• Clear, empathetic communication empowers patients, fosters trust, and optimizes adherence to individualized treatment plans.

Myasthenia gravis (MG) presents a unique set of challenges for patients. As healthcare providers (HCPs), understanding their most pressing concerns is paramount to delivering comprehensive and empathetic care.¹

Patients often grapple with uncertainties surrounding their diagnosis, treatment options, the long-term outlook, and the practicalities of daily life with a fluctuating autoimmune condition. By anticipating and effectively addressing these frequently asked questions, you can empower your patients, foster trust, and optimize how they treat their MG.¹

Questions about MG diagnosis

One of the initial hurdles for patients is understanding the diagnostic process. They may ask:

“How did I get myasthenia gravis?"

Explain that MG is an autoimmune disorder where the body's immune system mistakenly attacks the neuromuscular junction, interfering with nerve-muscle communication. While the exact trigger is not always clear, genetic predisposition and environmental factors may play a role. Emphasize that it is not contagious and not their fault.^1-3

"Why did it take so long to get a diagnosis?"

The variable and often subtle nature of MG symptoms can lead to delays in a diagnosis. Explain the different tests used (e.g., acetylcholine receptor antibodies, muscle-specific kinase antibodies, electromyography, edrophonium test) and why a combination of these may be necessary for confirmation.^1-3

One MG patient expresses their frustration about the long road to diagnosis:

"My path to finding the right medical team has been fraught with challenges. With Myasthenia Gravis and other underlying conditions complicating my case, finding a surgeon willing to take on the risk was a Herculean task."

Acknowledge their frustration and emphasize that now that a diagnosis is made, a tailored treatment plan can be put into place.

"What does 'seropositive' or 'seronegative' mean?"

Seropositive MG and seronegative MG can cause confusion, especially when their symptoms may be similar, as one patient notes:

"The first seronegative myasthenia gravis (SNMG) symptoms I noticed were not unlike the first symptoms that many seropositive individuals experience."

Clearly define these terms in relation to specific antibody tests. Explain that while seropositive MG (presence of detectable antibodies) is more common, seronegative MG occurs in about 10 percent of MG patients.⁴

Questions about MG treatment

Once diagnosed, treatment becomes a central focus. Common questions include:^1-3

"What are my treatment options?"

Patient data show that people with MG are very eager to learn about new treatment options. In fact, about 64 percent of MG patients say they actively seek out information about the latest treatments.

You should provide a comprehensive overview of available medications and therapies, including:⁵

• Anti-cholinesterase inhibitors
• Steroids
• Immunosuppressants
• Complement inhibitors
• Surgery
• Lifestyle changes

Explain the mechanism of action for each, potential benefits, and possible side effects. Emphasize that treatment is individualized based on disease severity, antibody status, and patient preferences.⁵

"How long will treatment last?"

Many patients want to know how long they will have to take medicine for their MG or if they need more than one infusion. Be realistic about the onset of action for different medicines.

Anti-cholinesterase inhibitors offer relatively quick symptomatic relief, while immunosuppressants and complement inhibitors may take longer to show significant effects. Manage expectations and stress the importance of adherence and regular follow-up.⁵

"What are the possible side effects of these drugs?"

Openly discuss potential side effects, both common and rare, for each prescribed drug. Provide strategies for managing milder side effects and emphasize the importance of reporting any new or concerning symptoms.⁵

"Will I ever be able to stop taking medicine?"

While some patients may achieve remission, MG is often a chronic condition requiring ongoing management. Avoid definitive statements and focus on the goal of achieving optimal symptom control with the lowest effective dose of medicine.^1-3

Questions about MG prognosis

Understanding the long-term outlook is a significant concern for patients:

"What is the long-term prognosis for MG?"

Reassure patients that with appropriate treatment, many people with MG can lead fulfilling lives. However, emphasize the variability of the disease course and the potential for fluctuations in symptoms. Discuss the importance of ongoing monitoring and proactive management to minimize exacerbations.⁵

Understanding that MG symptom severity varies widely can be extremely helpful in learning how to manage the disease, as this patient explains:

"When I was first diagnosed with myasthenia gravis (MG), I didn’t know there were levels to symptom severity. I just knew that I didn’t feel well. It took several months to understand how doctors classify how bad our symptoms are, and whether or not emergency care is needed."

"Will my MG get worse over time?"

While the disease can progress in some people, effective treatments aim to stabilize or improve symptoms. Explain that the course of MG is unpredictable, with periods of remission and exacerbation. Regular follow-up allows for timely adjustments to their treatment plan.⁵

Questions about daily life with MG

Living with MG impacts daily activities, leading to questions like:

"What can I do to manage my fatigue and weakness?"

Weakness and fatigue are among the most common symptoms and many patients want to know how they can manage it while still living their lives.

"I have weakness and a lot of pain over most of my body. All this hinders me, causes me great anguish, and stress. It can be rather depressing, too."

Provide practical strategies for managing fatigue, such as pacing activities, prioritizing rest, and identifying triggers. Discuss the role of occupational therapy and assistive devices.⁵

"Are there any activities I should avoid?"

Offer personalized advice based on the patient's specific symptoms and disease severity. While complete avoidance of activities is rarely necessary, caution may be advised for tasks requiring sustained physical exertion or those that could be dangerous if sudden weakness occurs.

"When I was first diagnosed with myasthenia gravis (MG), I didn’t know there were levels to symptom severity. I just knew that I didn’t feel well. It took several months to understand how doctors classify how bad our symptoms are, and whether or not emergency care is needed."

"How will MG affect my ability to work/drive/participate in hobbies?"

Discuss potential limitations and explore adaptive strategies or modifications that can help people with MG maintain independence and engagement in meaningful activities. Referrals to vocational rehabilitation or support groups can be helpful.

"Is there a diet I should be following?"

Generally, there are no specific dietary restrictions for MG. However, advise patients to maintain a healthy and balanced diet. For those with difficulty chewing and/or swallowing, refer them to a speech therapist for swallowing evaluations and dietary recommendations.⁵

"Due to my problems swallowing, [my dietitian] recommended that I drink smoothies and eat soft foods packed with healthy fats, such as avocados."

Be willing to listen

One MG patient notes how important it is to have a healthcare provider who listens:

"Some of the best qualities I look for when finding a doctor are their ability to listen, their experience with myasthenia gravis specifically, and being open to working with me to find a treatment plan, not just telling me. The ability to listen is the most important to me."

By proactively addressing these commonly asked questions with clear, empathetic, and evidence-based information, HCPs can greatly improve the patient experience, enhance treatment adherence, and empower people living with MG to navigate their journey with greater confidence and understanding. Open communication and a willingness to listen are crucial in building a strong therapeutic alliance and providing optimal care.