Let your Myasthenia Gravis treatment work for you

By Rabia Malik, MD, as reported to Kara Mayer Robinson

Myasthenia gravis (MG) is sometimes called “snowflake disease” because no two people with MG are ever the same.

This also applies to the response to therapy. Like other autoimmune diseases, there is no cure for myasthenia gravis. The goal of treatment is to have more days when you feel like yourself rather than a person with MG.

A variety of treatments

Your doctor may consider different types of treatment. You can have different results.

For mild illness, acetylcholinesterase inhibitors such as pyridostigmine may provide some relief.

If your symptoms are more severe, your doctor may try medications that suppress or modulate your immune system. But results often vary.

You can start with corticosteroids like prednisone. These are also referred to as steroids. If you need a high dose of steroids or your body cannot tolerate them, your doctor may try steroid-sparing drugs like mycophenolate and azathioprine, also known as immunosuppressants.

There are now some other newer treatments as well. Monoclonal antibodies are intravenous drugs that target a specific part of the immune system called the complement system. They’re usually used for people who either don’t respond to conventional treatments or are experiencing serious side effects from them. Rituximab (Rituxan) is helpful for some people with MG, especially those with MuSK antibodies. Two others are eculizumab (Soliris) and the most recently FDA-approved ravulizumab (Ultomiris).

Efgartigimod (Vyvygart) is a new class of drugs. It reduces levels of abnormal antibodies that block signaling between nerve and muscle cells, which causes weakness in patients with MG.

Or your doctor may recommend IV drugs or surgery to remove the thymus gland.

What to expect

With intravenous immunoglobulin or IVIG and plasma exchange or PLEX, you can see improvement within days. For oral medications such as steroids, it can take up to 2 weeks. With steroid sparing agents it can take several months or even up to a year.

MG drugs work best when you take them consistently and without abrupt changes. So it’s important to stay on track with your medications.

When you start taking medications, you may need to be in close contact with your doctor and have blood tests to make sure your body is tolerating them well.

Before you start taking any medication, ask your doctor about common side effects. Find out if your medication needs to be taken with food or on an empty stomach.

find a balance

Treating MG is about finding a delicate balance between suppressing the disease and minimizing side effects. Your doctor can try different strategies to reduce side effects and improve tolerability.

With most new drugs, you can start with a low dose and gradually increase it as needed.

Sometimes changing the dosage helps. For example, if you’re taking pyridostigmine and have diarrhea, abdominal cramps, or muscle spasms, switching to a lower dosage may help.

If you take steroids, your doctor may recommend taking them on a full stomach in the morning to reduce stomach irritation and insomnia. Calcium and a vitamin D supplement can reduce the impact of steroids on bone density. Limiting your sugar and salt intake can help with weight gain, fluid retention, and increases in blood sugar and blood pressure.

When treatment doesn’t work

Most people with MG respond very well to medication and notice a marked improvement in symptoms. However, about 10% to 15% of people can have a highly resistant disease.

There are several factors that determine how you respond to treatment, including MG subtype and the presence or absence of a malignant thymus tumor or thymoma. But there are still a number of unknown elements that make it difficult to predict how you will respond to treatment.

It’s also important to note that although MG is characterized by fluctuations, some people develop permanent weakness that may not respond to treatment.

Manage triggers

Because MG is a relapsing and remitting disease, it’s helpful to identify your triggers.

Common triggers are:

• Suddenly stopping your MG medication
• Illness
• Recent Surgery
• sleep deprivation
• Emphasize

Reading and viewing a screen for a long period of time without interruptions can produce symptoms. It is typical of most people with MG to have more symptoms in the late afternoon or evening.

It’s also important to note that certain medications, including antibiotics, and supplements like magnesium can make MG worse.

Try keeping a symptom diary to keep track of your symptoms. Note the frequency. For example, if you’re seeing double, is it weekly, daily, or constant? Keeping a symptom diary can help your doctor understand your response to treatment and adjust your regimen.

take care of yourself

Medication adherence and close follow-up with your neurologist are important to get the most out of your treatment and prevent MG from progressing.

To sleep well. Try to regulate your sleep-wake cycle as much as possible. Have a consistent bedtime. Reduce stimulation in the evenings. Don’t leave your TV on in the bedroom. Napping during the day can combat fatigue, but try to regulate the time and duration of the nap.

eat well Eat clean and simple. Limit processed foods. Eat more fresh fruits, vegetables and lean proteins.

move. Start an exercise program with the help of your doctor. In addition to the cardiovascular benefits, exercise can help with stress reduction and muscle strength. Try to exercise at a time of day when you feel most comfortable.

to be vaccinated. Talk to your doctor about vaccinations to prevent infection. Most vaccines, including the flu, shingles, and COVID-19, are considered safe and effective for people with MG.

Build a good relationship with your doctor

A good patient-doctor relationship is the key to success. Your doctor can help you achieve the goal of having more days when you feel like yourself.

Try these tips to improve your relationship with your doctor:

• Be organized. Before your visit, make a list of your symptoms and any questions you have. At the end of your visit, ask for written instructions.
• Follow up. Make sure you understand when you need follow-up visits. Find out the best way to connect with your doctor and support staff. For example, do they prefer phone calls or an online scheduling system?

Remember that open communication with your doctor is essential.