Make Your Treatment Work for You

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

Myasthenia gravis (MG) is sometimes referred to as the “snowflake disease” because no two people with MG are ever alike.

This is also true for treatment response. Like other autoimmune diseases, there’s no cure for myasthenia gravis. The goal of treatment is to have more days where you feel like yourself instead of a person with MG.

A Variety of Treatments

Your doctor may consider different types of treatment. They may have varying results.

For mild disease, acetylcholinesterase inhibitors like pyridostigmine may give you some relief.

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

They may start with corticosteroids like prednisone. These are also known as steroids. If you need a high dosage of steroids or if your body doesn’t tolerate them, your doctor may try steroid-sparing agents, like mycophenolate and azathioprine, which are also known as immunosuppressants.

There are some other newer treatments available now as well. Monoclonal antibodies are intravenous medications 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 traditional treatments or have serious side effects from them. Rituximab (Rituxan) is helpful for some people with MG, particularly those with MuSK antibodies. Two others are Eculizumab (Soliris) and the one most recently approved by the FDA, ravulizumab (Ultomiris).

Efgartigimod (Vyvygart) is a new class of medication. It reduces levels of abnormal antibodies that block the signal transmission between nerves and muscle cells, which is what creates the weakness in patients with MG.

Or your doctor may recommend IV medication or thymus gland removal surgery.

What to Expect

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

MG medications work best if you take them consistently, without abrupt changes, so staying on track with your medication is key.

When you start taking medication, you may need to follow up closely with your doctor and complete bloodwork to make sure your body is tolerating them well.

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

Striking a Balance

Treating MG is about striking a fine balance between suppressing the disease and minimizing side effects. Your doctor may try different strategies to reduce side effects and improve tolerance.

For most new medications, they may start at a low dose and increase it gradually as needed.

Changing the dosage sometimes helps. For example, if you take pyridostigmine and have diarrhea, abdominal cramping, or muscle cramping, it may help to switch to a lower dosage.

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

When Treatment Doesn’t Work

Most people with MG respond very well to medications and start noting significant improvement in symptoms. However, about 10% to 15% of people may have very resistant disease.

There are several factors that determine how you respond to treatment, including the subtype of MG and the presence or absence of thymus gland malignancy or thymoma. But there are still a number of unknown elements, which makes it difficult to predict how you’ll respond to treatment.

It’s also important to note that even though MG is characterized by fluctuations, some people develop fixed weakness, which may not respond to treatment.

Managing Triggers

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

Common triggers include:

  • Stopping your MG medication suddenly
  • Illness
  • Recent surgery
  • Sleep deprivation
  • Stress

Reading and watching a screen for a prolonged period without breaks may bring on symptoms. It’s typical for most people with MG to experience more symptoms in the late afternoon or evenings.

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

Try keeping a symptom diary to track your symptoms. Note the frequency. For example, if you have double vision, is it weekly, daily, or constant? A symptom diary can help your doctor understand your response to treatment and how to modify your regimen.

Taking Care of Yourself

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

Sleep Well. Try to regulate your sleep-wake cycle as much as possible. Have a consistent bedtime. Reduce stimulation in the evenings. Don’t keep your TV on in bedroom. Taking a nap during the day may combat fatigue, but try to regulate the time and duration of naps.

Eat Well. Eat a clean and simple diet. Limit processed foods. Eat more fresh fruits, vegetables, and lean proteins.

Get Moving. Start an exercise program with help from your doctor. In addition to cardiovascular benefits, exercise may help with stress reduction and muscle strength. Try exercising at a time of day when you feel your best.

Get Vaccinated. Talk to your doctor about vaccines to prevent infections. The majority of vaccines, including flu, shingles, and COVID-19, are considered safe and effective for those with MG.

Build a Good Relationship With Your Doctor

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

Try these tips to improve your relationship with your doctor:

  • Be organized. Make a list of your symptoms and your questions before your visit. At the end of your visit, ask for instructions in writing.
  • Follow up. Make sure you understand when you need follow-up visits. Find out how to best get in touch with your doctor and support staff. For example, do they prefer phone calls or an online scheduling system?

Remember, open communication with your doctor is essential.