Travel Tips for Myasthenia Gravis

Travel can seem daunting when you have myasthenia gravis (MG). You may be worried that fatigue will set in too quickly, heat will trigger a symptom flare-up, or muscle weakness will prevent you from doing what you want to do.

While these concerns are valid, don’t let MG hold you back from traveling if it’s something you enjoy and your condition is well controlled. Just ensure that you’re prepared for the various hurdles you may face.

“Travel is absolutely possible with MG, but it does require more planning than usual,” says Natalia Gonzalez, MD, a neurologist and the chief of staff at Hawaiʻi Pacific Neuroscience. “Overall, pacing, planning, and avoiding overexertion are key to making travel safe and manageable.”

Common Barriers to Travel With Myasthenia Gravis

The biggest travel barrier for people with MG is fatigue, which fluctuates throughout the day, increases with muscle use, and flares with heat.

If you’re taking immunosuppressant drugs for MG, you have another barrier to travel: infection risks. “Stay away from too crowded areas,” says Xinli Du, MD, PhD, a neurologist with VCU Health's department of neurology. “If there are people sick around you, just try to stay away.”

When and Where to Go

Given that heat can exacerbate fatigue in people with MG, it’s important to consider the weather at your destination and make sure that cool environments are available should you need them. Benjamin Becker, MD, a neuromuscular neurologist at University of Michigan Health in Ann Arbor, says that during winter and spring some of his patients with MG travel south to places like Florida specifically to be in warmer environments. “You just have to be mindful of where you’re going,” he says.

Whether you want a relaxing resort vacation, adventure in a new city, or a tour of historical landmarks, keep in mind the possibility of crowds and the risk of communicable diseases. Try to avoid traveling during peak tourist season if your destination has one.

“My one main concern is going on a cruise — an enclosed place with many people breathing the same air,” Dr. Du says. Wearing masks indoors can help decrease your risk of respiratory infections.

Always keep your vaccinations up-to-date and know that you may need additional vaccines depending on your destination. But if you’re on immunosuppressant drugs, you cannot get live attenuated vaccines, only nonlive or inactivated ones, Du says.

Where to Stay

Always be aware of the accessibility features at your lodgings.

“Are they disability-friendly or wheelchair-friendly?” Du says. If you’re staying with friends or in a rental property, for example, you don’t want to have to climb multiple stairs, luggage in tow. “Try to communicate ahead of time to see what the situation is like getting in and out of the place you're going to stay,” she says.

When booking a hotel or cruise, request a room near the elevator to minimize walking time. To be safe, request an accessible bathroom with grab bars and a shower chair.

Depending on your mobility, you may have to consider your lodgings’ bedding and furniture, which may be too elevated or soft to easily get in and out of.

Who to Go With

Talk with the people you’re traveling with about your need for rest and the possibility of last-minute changes to your plans, which may mean they’ll have to do some activities without you. Let them “know your limits so they can accommodate and help you,” Du says.

Some people prefer to travel alone, and Dr. Becker doesn’t see an issue with this as long as your MG is under control. “But some people might need to travel even when their symptoms aren’t well controlled,” he says. “I wouldn’t want them going alone in case they have trouble breathing.”

If you’re looking to join a tour group, communicate your needs before booking and again with the tour leader before heading out.

How to Get There

Also avoid traveling when you know your fatigue may be worse, advises physical therapist and MG patient Liz Plowman, DPT: “That red-eye flight may be cheaper, but it may not be worth the physical cost.”

Pro tip: Request airport assistance from your airline well in advance. “Take advantage of available assistance services whenever possible, such as airport wheelchair services, preboarding, and transportation assistance,” Plowman says.

What to Do While You’re There

Balance your day-to-day activities with ample rest. “It can be tempting to pack every day with activities, but that approach often backfires for people with MG,” Plowman says.

To conserve your energy, avoid too many repetitive, strenuous activities, and alternate between energy-intensive activities and lighter ones, with scheduled rest in between. Be aware of your energy fluctuations when planning your days. “Do fun things when you have more energy in the morning or when it’s cooler,” Du says.

Make sure to stay cool and hydrated throughout the day, and lean on mobility assistance whenever possible, such as renting a wheelchair or scooter at theme parks, malls, and zoos.

Whatever you get up to, be flexible and take things slowly — it’s okay if you can’t get to everything on your itinerary.

What to Bring

Your medications are the most important items to pack, so don’t forget them. “Bring more medication than needed — ideally extra in case of delays or loss,” Dr. Gonzalez says. “Split it between carry-on and checked luggage.” If you’re traveling across time zones, speak with your provider about adjusting your medication dosing schedule.

Your provider can also supply you with a letter detailing important medical information, including your diagnosis and treatments, whether you’re immunosuppressed, and the medications you need to avoid. "I even provide patients with a temporary disability accommodation letter,” Du says.

Other must-haves: a medical alert bracelet, assistive devices (if you use them), snacks, a refillable water bottle, and a portable fan. Reduce your energy expenditure by using wheeled luggage and wearing comfortable, lightweight clothing and supportive shoes that are easy to put on.

“Most importantly, pack light,” Plowman says. “Simply handling a heavy suitcase can significantly increase fatigue and muscle weakness.”