Treatment transitions: When to rethink your MG care plan

Last updated Jan. 2, 2025, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Just as your myasthenia gravis (MG) symptoms may change with time, so may your treatment plan.

Some reasons for reevaluating your treatment plan include how generalized myasthenia gravis (gMG) symptoms are affecting your eyes and other areas of your body, side effects from medications, and advancements in treatment options.

But by being proactive and working with your MG healthcare providers, you can help make sure that your treatment continues to support your health and well-being.

Reasons to rethink treatment

The goal of treatment is to manage your MG symptoms effectively, but when they are not being well controlled, side effects are hard to tolerate, or new treatments become available, it might be a good time to reconsider your current approach.

Possible reasons to consider changing your MG treatment:

• significant problems with your eyes, muscle weakness, fatigue, or other MG symptoms despite following your treatment plan
• symptom progression, such as more frequent or severe flare-ups, which might indicate your current treatment is no longer effective
• side effects from MG medications, such as corticosteroids or immunosuppressants, including nausea, fatigue, and insomnia
• health complications that might affect response to treatment, such as infections, bone density loss, or diabetes from long-term medication use
• interest in the opportunity to try experimental MG therapies or join clinical trials that might offer treatment alternatives.

Treatment planning

The first step is to discuss potential changes to your treatment with your MG care team.

By working with your MG doctor and other healthcare providers, you can explore treatment choices that can help improve symptom management.

Before your appointment, it can be helpful to research the underlying causes of MG and learn more about available treatment approaches.

This knowledge can empower you to have a more informed conversation about how MG is affecting your body.

MG treatments

MG usually develops when your immune system produces self-reactive antibodies that mistakenly target your body’s own tissues or proteins.

In MG, these self-reactive antibodies attack proteins essential for nerve-muscle communication. The disruption leads to weak muscle contractions and symptoms such as muscle weakness and fatigue.

The goal of MG treatment is to either reduce the immune system’s harmful effects or improve nerve-muscle signaling.

Your treatment options may depend on your specific symptoms, the type of MG you have, and its underlying cause, including:

• medications that ease symptoms of muscle weakness, which may be given orally or by infusion
• plasmapheresis, a blood filtering treatment that lowers the number of self-reactive antibodies that cause MG
• intravenous immunoglobulin (IVIG) infusions from healthy donors that help bring down the autoimmune response in MG
• thymectomy, or the surgical removal of the thymus gland, to reduce the severity of MG symptoms.

Holistic treatment of MG tries to focus on the mental and social aspects of living with MG along with the medical and physical aspects.

Complementary therapies for MG can include stress management techniques such as relaxation and meditation, counseling for emotional support, and lifestyle changes, such as following a balanced diet, doing regular exercise, and getting enough sleep.

Physical, occupational, and speech therapies can help with maintaining your muscle strength, addressing pain management, taking care of daily tasks, and dealing with communication issues.

There are experimental treatments for MG currently being investigated. If you’re interested, ask your healthcare provider about clinical trial opportunities.

Tips for talking with your doctor

Preparing for your appointment can make it easier to communicate with your healthcare provider, especially when discussing treatment options for MG.

Start by identifying what your main goals are for your visit, such as exploring new MG treatments or addressing concerns about your current treatment plan.

It can also be helpful to make a list of questions or concerns about your treatment and keep a daily log of your MG symptoms that you want to discuss.

During the visit, be open about your symptoms, how treatments are affecting you, and any challenges you’re facing. Sharing this information can give your doctor a better sense of how to adjust your care.

Understanding the medical language and processing all the information can be overwhelming. Don’t hesitate to ask for explanations or request more details about treatment choices.

You might want to ask a family member or friend to come with you to help you stay focused. You or the person with you may also want to take notes or record the appointment — with your doctor’s permission — to review later.

Coordinating with multiple healthcare providers can be a challenge, but clear communication helps keep everyone on the same page. Try to keep a record of your medical information, including treatment plans, medications, and test results, and share it with all your providers.

Questions to ask

Asking thoughtful questions during your appointment can help you better understand your treatment options and make the most of your visit.

Possible questions to ask include:

• What are the benefits and risks of the different treatments available for my specific MG type?
• Would additional tests help me better understand my MG progression or guide treatment adjustments?
• What should I know about potential side effects of new medications or therapies?
• How often should I schedule follow-up visits to monitor my symptoms and adjust my new treatment plan?

If you do change your MG treatment plan, be patient. Some medications take time to reach their full effect, while others may require adjustments to the dose before you notice significant changes.

Monitoring your body’s response is key. Watch for side effects from new medications, and track whether your symptoms improve, worsen, or stay the same.

Getting a second opinion

If you’re unsure about your treatment plan or symptom progression, a second opinion from an MG specialist can provide clarity, help identify new treatment options, or confirm the effectiveness of your current approach.

Your neurologist or primary care provider may be able to help you find specialists or clinics that have experience treating MG.

If specialists are not available in your area, consider using telemedicine or reaching out to larger medical centers that specialize in rare conditions such as MG.

The Myasthenia Gravis Foundation of America offers an online tool to help you find MG specialists in the U.S.

The forums on Myasthenia Gravis News and its Facebook page also have resources for connecting with others about healthcare and treatment, along with news about research and clinical trials.

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.