Long-Term Immunosuppressant Use for LEMS: How to Stay Healthy

Taking long-term immunosuppressants for Lambert-Eaton myasthenic syndrome (LEMS) means balancing two important goals: easing symptoms and lowering the extra infection risks that can come with treatment.

LEMS is a rare autoimmune neurological disorder that can be tumor-related or not tumor-related. In people with the condition, the immune system produces harmful antibodies that disrupt the nerve-to-muscle signal and causes muscle weakness, fatigue, and other symptoms that can interfere with everyday life, says Shaida Khan, DO, associate professor of neurology with the O’Donnell Brain Institute at UT Southwestern Medical Center and chief of neurology at Parkland Hospital in Dallas.

“Immunosuppressants reduce the white blood cells that are involved in producing those harmful antibodies and help manage symptoms,” Dr. Khan says.

But because these medications also suppress parts of the immune system that help fight germs, staying healthy often requires extra attention to infection prevention, vaccines, monitoring, and daily habits.

Not everyone with LEMS needs immunosuppression, says Khan.

“But many do, especially people with tumor-related LEMS, which often causes more severe neurological symptoms and may require immunosuppression along with treatment for the underlying cancer,” she says.

“People who take immunosuppressants for LEMS experience a substantial improvement in symptoms of weakness and fatigue,” says David Randall, DO, a neurologist at Advocate Health Care in Park Ridge, Illinois.

The trade-off is that the same treatment that calms the immune attack behind LEMS can also make the immune system less forceful against germs. “The risks are that the immune system will also respond less strongly to infections — and that puts the person at increased risk of mild to severe infections, including lung, kidney, and even brain infections,” says Dr. Randall.

In rare cases, longer or heavier immunosuppression can also increase the risk of certain malignancies, which is why the treatment plan needs to be individualized and closely monitored, says Khan.

“It’s important to be cautious to not reduce the immune system’s function any more than is necessary during treatment,” adds Randall.

“In general, the recommendations are to avoid or limit exposure to sick contacts or high-risk environmental areas while immunosuppressed,” says Khan. Most people with LEMS on immunosuppressants can safely continue with their activities of daily living and even enjoy traveling and social events, she says.

Tips for staying safe and protecting against infection include:

Safe Socializing Staying healthy on immunosuppressants doesn’t mean you have to miss out on activities or holiday celebrations.

Following a few basic habits, especially during cold, flu, COVID-19, or RSV season, can help limit your risk:

• Ask friends and family to tell you if they are sick or had recent exposures to illnesses before you get together.
• Avoid close contact with people who have colds or other infections.
• Run errands at less crowded times when possible.
• Use a well-fitted mask in crowded indoor spaces.
• Choose outdoor or well-ventilated settings for socializing when you can.

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Food Safety Taking an immunosuppressant puts you at higher risk of food poisoning, but safe food handling and food choices can help keep you healthy.

Basic steps include:

• Wash your hands before eating or preparing food.
• Keep raw meat, poultry, seafood, and eggs separate from ready-to-eat foods.
• Cook foods thoroughly.
• Refrigerate leftovers promptly.
• Be cautious with foods that may have been handled or stored unsafely.
• Educate yourself about safer food choices.

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“Live vaccines are prohibited with immunosuppression, but staying up to date on [other] vaccines is very important for individuals who are immunosuppressed,” Khan says.

Commonly used vaccines that are safe for people on immunosuppression include:

• Flu Vaccine Most people taking immunosuppressants should get a flu shot every year. Avoid the nasal spray flu vaccine, which is a live vaccine and may not be safe for people with weakened immune systems.
• Updated COVID-19 Vaccine People who are immunocompromised may need additional COVID-19 doses or boosters to stay protected.
• RSV Vaccine Respiratory syncytial virus (RSV) can cause serious respiratory illness, especially in older adults and people at higher risk.
• Pneumococcal Vaccine Pneumococcal disease can lead to pneumonia, bloodstream infections, and meningitis.
• Shingles Vaccine The shingles vaccine is recommended for adults ages 50 and older, as well as for some immunocompromised adults ages 19 and older.
• Other Vaccines Some people who are immunocompromised may also need hepatitis B, Hib, or meningococcal vaccines, depending on their health history and risk level.

Live vaccines that are not safe include:

• MMR
• Varicella, also known as chickenpox
• Nasal spray flu vaccine

“If you are traveling to a country with concerns for yellow fever, you cannot receive this vaccine either, as it is a live vaccine,” Khan says.

The vaccine plan should be individualized. People who are immunocompromised should talk with their doctor about which vaccines are appropriate; inactivated vaccines may require more than one dose or regular boosters.

People with LEMS on immunosuppression need more frequent lab monitoring to monitor the effects of the medication, says Khan.

Your checkup list may include:

Bone Density Measurements This is recommended for people taking prednisone or another steroid, says Khan.

Cancer Screening or Monitoring Over half of the people with LEMS will have or are at risk for underlying cancer, says Randall. Screening includes an annual skin check with a dermatologist.

Diet, sleep, and exercise are key cornerstones of health, says Khan. “These are important for everyone, of course, but they are even more crucial for individuals with chronic disease,” she says.