Staying Healthy on Immunosuppressants for LEMS
Taking long-term immunosuppressants for Lambert-Eaton myasthenic syndrome (LEMS) requires balancing two priorities: controlling the autoimmune disease while reducing the increased risk of infection that can come with treatment.
LEMS is a rare autoimmune neurological disorder that may occur with an underlying cancer (tumor-related) or develop on its own (non-tumor-related). In people with LEMS, the immune system produces antibodies that interfere with communication between nerves and muscles, leading to muscle weakness, fatigue, and other symptoms that can make everyday activities more difficult, explains Shaida Khan, DO, associate professor of neurology at 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 involved in producing these harmful antibodies and help manage symptoms,” Dr. Khan says.
However, because these medications also weaken parts of the immune system that defend against bacteria, viruses, and other germs, people taking them need to be more vigilant about infection prevention, vaccinations, routine monitoring, and healthy lifestyle habits.
The Benefits — and Risks — of Immunosuppressants
Not everyone with LEMS requires immunosuppressive therapy, Khan says.
“Many people do, especially those with tumor-related LEMS, which often causes more severe neurological symptoms and may require immunosuppression in addition to treatment for the underlying cancer,” she says.
For those who need these medications, the benefits can be significant.
“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 downside is that suppressing the immune system’s attack on healthy tissue also reduces its ability to fight infections.
“The immune system will respond less strongly to infections, putting people at increased risk of illnesses ranging from mild infections to serious lung, kidney, or even brain infections,” Randall says.
Long-term or more intensive immunosuppression may also increase the risk of certain cancers in some people, making individualized treatment and regular monitoring essential, Khan says.
“It’s important not to suppress the immune system any more than is necessary,” Randall adds.
Reducing Your Risk of Infection
According to Khan, most people taking immunosuppressants can continue working, traveling, socializing, and carrying out their usual daily activities.
“In general, the recommendations are to avoid or limit exposure to sick contacts or high-risk environments while immunosuppressed,” she says.
These everyday precautions can help lower your risk of infection.
Practice Good Hand Hygiene
Frequent handwashing remains one of the most effective ways to prevent illness.
- Wash your hands with soap and water after being around other people, before eating, and after using the bathroom.
- Avoid touching your eyes, nose, or mouth unless your hands are clean.
- Carry alcohol-based hand sanitizer when soap and water aren’t available.
Socialize Safely
Being immunosuppressed doesn’t mean you have to avoid family gatherings or social events. During respiratory virus season—including cold, flu, COVID-19, and RSV season—take a few extra precautions:
- Ask friends and family to let you know if they’re feeling sick or have recently been exposed to an illness.
- Avoid close contact with people who have contagious infections.
- Run errands during less crowded times when possible.
- Wear a well-fitting mask in crowded indoor settings.
- Choose outdoor or well-ventilated spaces for gatherings whenever you can.
Follow Food Safety Practices
Immunosuppressants can increase the risk of foodborne illness, making safe food handling especially important.
To reduce your risk:
- Wash your hands before preparing or eating food.
- Keep raw meat, poultry, seafood, and eggs separate from ready-to-eat foods.
- Cook foods thoroughly.
- Refrigerate leftovers promptly.
- Avoid foods that may have been improperly prepared or stored.
- Learn which higher-risk foods may be best to avoid while immunosuppressed.
Stay Up to Date on Vaccinations
“Live vaccines are prohibited with immunosuppression, but staying current on recommended vaccines is very important,” Khan says.
Vaccines That Are Generally Recommended
Depending on your age, health history, and risk factors, your healthcare provider may recommend:
- Annual influenza (flu) shot (not the live nasal spray vaccine)
- Updated COVID-19 vaccine, including additional doses or boosters if recommended
- RSV vaccine
- Pneumococcal vaccine
- Shingles vaccine
- Other vaccines, such as hepatitis B, Hib, or meningococcal vaccines, when appropriate
Live Vaccines to Avoid
People taking immunosuppressants generally should not receive live vaccines, including:
- MMR (measles, mumps, and rubella)
- Varicella (chickenpox)
- Live nasal spray flu vaccine
- Yellow fever vaccine
“If you are traveling to a country where yellow fever vaccination is recommended, you cannot receive this vaccine because it is live,” Khan says.
Because vaccine recommendations vary based on the type of immunosuppressant and your overall health, talk with your neurologist, immunologist, or primary care clinician about which vaccines you need and the best timing if you’re starting, stopping, or changing medications.
Keep Up With Monitoring and Preventive Care
Regular medical follow-up helps ensure your treatment remains both safe and effective.
Your healthcare team may recommend:
Routine Blood Tests
People taking immunosuppressants typically need regular laboratory monitoring to check for medication side effects and ensure treatment is working safely, Khan says.
Bone Health Monitoring
People taking prednisone or other corticosteroids may need periodic bone density testing because these medications can increase the risk of osteoporosis.
Cancer Screening
More than half of people with LEMS have or are at risk for an underlying cancer, Randall says. Depending on your situation, your doctor may recommend additional cancer screening, including yearly skin examinations by a dermatologist.
Preventive Healthcare
People with LEMS should continue receiving all recommended age-appropriate preventive care, including routine cancer screenings, regular dental cleanings, and other standard health maintenance.
Support Your Immune System With Healthy Habits
Lifestyle choices can’t replace immunosuppressive treatment, but they can help support your overall health and resilience.
Eat a Nutritious Diet
A balanced diet rich in vegetables, fruits, whole grains, lean protein, and healthy fats supports overall health. Limiting highly processed foods may also benefit immune function.
Prioritize Sleep
“Sleep is important for everyone, but it’s even more crucial for individuals with chronic disease,” Khan says.
Research has consistently linked poor sleep with a higher risk of infections and reduced immune function.
Stay Physically Active
“Exercise is very important, including both strength training and aerobic exercise, particularly for those using prednisone,” Khan says.
Regular physical activity helps maintain muscle strength, supports bone health, and may also contribute to a healthier immune system.
The Bottom Line
Immunosuppressants can dramatically improve weakness and fatigue in people with LEMS, making it easier to stay active and maintain quality of life. Although these medications increase the risk of infection, simple preventive measures—such as good hand hygiene, staying current on recommended vaccines, attending regular medical checkups, and maintaining healthy daily habits—can help reduce those risks while allowing you to continue many of your usual activities.