In an effort to create more uniform, globally accepted standards of care for people living with MG, a Task Force was created in 2013 with the mission of providing MG treatment recommendations. The Task Force was made up of 15 international experts, and they published the international consensus guidance for the management of MG in 2016, with further review in 2019.¹

In this article, we’ll discuss the recommendations established in the MG treatment guidelines that are intended to support healthcare providers caring for people living with MG around the world.

We’ll also explore a concept called minimal symptom expression (MSE). MSE is a term used to describe a patient with an MG-ADL (Myasthenia Gravis Activities of Daily Living) score of zero or one.² The MG-ADL scale is an eight-question survey that evaluates your MG symptoms, with scores that range from zero to 24—the lower the number, the less MG symptoms are impacting your day-to-day.³

We’ve partnered with Wilma Koopman,* a nurse practitioner with decades of experience helping people who have been diagnosed with MG, to create a handy discussion guide that includes common questions to start the conversation with your doctor about managing MG, including tracking symptoms and working together to create a treatment plan that works best for you. The aim is to reduce symptoms and, if possible, reach minimal to no symptoms.

Make sure to always consult your healthcare team with any questions about your treatment plan and personal goals.

Anticholinesterase inhibitors (ACIs)

Anticholinesterase inhibitors, or ACIs, help prevent the breakdown of chemical signals sent between nerves and muscles, which may help improve muscle weakness.^4,5

Speak with your doctor for more information about ACIs. Download the MG management discussion guide for questions to ask at your next appointment.

Steroids

Steroids for MG are taken orally and are generally considered the first immunosuppressive treatment option for most people living with MG.^1,6

These medicines are used to minimize (or suppress) production of antibodies that can cause weakness.

Ask your doctor for more information about steroids. Download the MG management discussion guide for questions to ask at your next appointment.

Immunosuppressive therapies (ISTs)

You may have heard of ISTs during your MG treatment journey. ISTs stand for immunosuppressive therapies and are also referred to as nonsteroidal ISTs, because they are a type of medication that does not contain steroids. ISTs are commonly used in the treatment of MG, as recommended in the MG treatment guidelines.^1,6,7

Speak with your doctor to learn more about ISTs. Download the MG management discussion guide for questions to ask at your next appointment.

Bloodstream therapies

Bloodstream therapies, such as intravenous immunoglobulin (IVIg) and plasma exchange, are also used to treat some kinds of MG, as recommended in the guidelines, by placing healthy antibodies into the blood.^1,8 One bloodstream therapy is a blood-cleansing technique that filters out harmful antibodies your body has made.⁹

Ask your doctor for more information about bloodstream therapies. Download the MG management discussion guide for questions to ask at your next appointment.

Thymectomy

According to the MG treatment guidelines, people who are diagnosed with generalized myasthenia gravis (gMG) are evaluated for an operation called a thymectomy, which is the removal of the thymus gland, located just under the breastbone.^1,10

Talk to your doctor if you have questions about thymectomy. Download the MG management discussion guide for questions to ask at your next appointment.

Biologic therapy

Biologic therapy is another type of treatment used for gMG. Biologics are created from living things or the products of living things. Biologic treatment in MG is generally administered through intravenous (IV) infusions or via subcutaneous injections, which involve injecting the medicine into the layer beneath the skin.¹¹

IV infusions and subcutaneous injections can be given at an infusion center, doctor’s office or at home by a trained healthcare professional.

Speak with your doctor to learn more about biologic therapy. Download the MG management discussion guide for questions to ask at your next appointment.

Did you know?

In addition to questions you might have on MG treatment options, you may also want to consider talking to your doctor about the following:

• Symptom tracking with the MG-ADL scale may help you have more productive conversations with your doctor about managing your MG. The MG-ADL scale is an eight-question survey that evaluates your MG symptoms. Scores range from zero to 24—the lower the number, the less MG symptoms are impacting your day-to-day.³ Tracking your symptoms may lead to better conversations with your healthcare team and may help determine if an MG treatment is working for you
• Aiming to reduce symptoms and, if possible, MSE, may be good goals to discuss with your doctor. A score of zero or one on the MG-ADL scale is considered MSE.² Ask your healthcare team how you can lower your MG-ADL score to help reduce symptoms. It's important to remember that while MSE is a good goal to strive for, symptoms may change¹²
• The way the medication is administered is also something to consider. There are options that allow people to choose based on their personal preferences and lifestyles. Some may prefer IV infusions, while others may prefer subcutaneous injection therapy
• Knowing how to identify the triggers and potential signs of an MG crisis may help you and your supporters develop a crisis plan
• Diet and nutrition come with some special challenges for people with MG. MG United Canada also has information on saving energy at mealtimes and preparing meals that are MG-friendly
• Exercise should be adapted to fit with the symptoms of MG. Consider yoga and walking. Talk to your healthcare team before starting any exercise program^13,14
• Talking to others can help with feelings of isolation and frustration. But first, you will need to help your loved ones understand what you are going through. Learn more about explaining MG to others