Do people often say you look tired because of your eyes? Droopy eyelids, known as ptosis, are a common symptom of myasthenia gravis (MG). In fact, about half of all people with MG experience an eye problem as a first sign of their condition. Several members of MGteam have reported they’ve had ptosis at some point.

Myasthenia gravis is an autoimmune condition where the immune system attacks the connection between nerves and muscles. This disruption leads to muscle weakness and fatigue, which can cause droopy eyelids and inhibit your ability to perform daily activities.

Here are four facts about ptosis to help you better understand and manage this symptom.

1. Ptosis Can Be an Early Symptom of Myasthenia Gravis

Fifteen percent of people with diagnosed MG will develop only eye symptoms such as ptosis. These symptoms can affect one eye on some days and eventually impact both eyes. This type of MG is known as “ocular myasthenia gravis.” Ocular MG exclusively weakens the extraorbital muscles, which control movement of the eyeballs and upper eyelids. People living with ocular MG don’t experience weakness in other parts of their body.

The other 85 percent of people with MG experience weakness in other parts of the body. Ptosis tends to be noticed early compared to other symptoms like trunk and limb weakness, because it’s visible. When someone starts having symptoms that affect more than just their eyes and vision, they’re said to have “generalized MG.”

2. Eye Muscles Tire Easily Because They Work Constantly

Extraocular muscles keep the eyelids open so we can see — which means they’re constantly active when we’re awake. These muscles tire easily in myasthenia gravis because the immune system damages the connection with nerves that control the muscles, leading to droopy eyelids.

It’s important to know that MG can affect any part of the body. Health care professionals can recommend a treatment plan to control symptoms and help you maintain an active lifestyle.

3. Myasthenia Gravis Medications and Surgeries Can Treat Ptosis

If you're experiencing eyelid drooping caused by MG, take heart: It can be treated with the same medications used for MG-related muscle weakness in other parts of your body.

Here are the main types of medications and therapies that your neurologist (specialist in nervous system diseases) may recommend.

Pyridostigmine

Pyridostigmine (Mestinon) can slow the body’s breakdown of acetylcholine, an important chemical that helps nerves communicate with muscle cells.

Cholinesterase inhibitors like pyridostigmine help make sure there is enough acetylcholine to help muscles contract.

Corticosteroids

Corticosteroids (steroids) like prednisone can reduce the harmful effects of the immune system in MG. They work by blocking the immune system from producing damaging antibodies — immune proteins that identify infected cells and tag them for destruction.

Because corticosteroids reduce the amount of antibodies in general, they lead to a higher risk of infections as well as other side effects such as bone thinning, weight gain, and diabetes.

Immunosuppressants

Medicines such as azathioprine (Azasan, Imuran) and mycophenolate mofetil (CellCept) can also improve MG symptoms by blocking aspects of the immune system. Immunosuppressants can be prescribed with corticosteroids.

Newer Medications

If other medications don’t work well for your MG, your health care provider may recommend trying a newer drug. Medications approved in the past few years by the U.S. Food and Drug Administration (FDA) to treat MG include:

• Eculizumab (Soliris)
• Efgartigimod (Vyvgart)
• Ravulizumab (Ultomiris)
• Rozanolixizumab-noli (Rystiggo)
• Zilucoplan (Zilbrysq)

Surgery

Surgery could be an option if your thymus gland is suspected to cause problems related to MG. The surgical removal of the thymus — known as a thymectomy — can offer several benefits, such as improving muscle weakness and reducing the need for medication.

If your ptosis doesn’t go away with medication, your ophthalmologist (eye disease specialist) might also recommend eye surgery, such as eyelid elevation or lifting.

“Pyridostigmine didn’t work for me,” said one MGteam member. “I had to have the ptosis surgery to keep the eyelid up.”

Because MG varies from person to person, it's important to discuss your treatment options, including risks and benefits, with your doctor. Make sure your doctor understands your goals and preferences so you can work together to find a treatment plan that suits you.

4. You Can Take Steps at Home To Help With Ptosis

It may take time until you and your provider come up with the best combination of medications to deal with your drooping eyelids. Here are a few steps that you can take to cope with your ptosis at home.

Cold Therapy

Ice packs and cold compresses can provide temporary relief for your drooping eyelids. Cooling the area around your eyelid for no more than 20 minutes can slow down MG and help muscles contract. An MGteam member shared, “When my eyes fatigue, I put cold compresses on them for about 15 minutes, and this seems to help me.”

Eye Coverings

Some people with one drooping eyelid might have double vision. A member of MGteam shared their experience: “It was one of the first symptoms I had along with drooping eyelids. It’s gone for the most part, but I still get it sometimes.”

Another member said, “I occasionally have double vision, especially when I’m fatigued.”

You can buy an eye patch to cover your droopy eyelid to help you see better. If you wear glasses, you may also cover one lens of the eyeglasses to manage your double vision.

Rest

Another home remedy to help you cope with ptosis doesn’t require spending any money. Finding ways to make the most of your energy may help. As one MGteam member mentioned, “Rest is the one prescription I forgot to take.”

Plan demanding activities for when you have the most energy. It’s also important to let yourself rest to lessen stress on your body.

Talk With Others Who Understand

MGteam is the social network for people with the autoimmune disease myasthenia gravis. On MGteam, more than 1,900 members come together to ask questions, give advice, and share their experiences with others who understand life with myasthenia gravis.

How does ptosis affect you? Have you found effective ways to manage it? Share your story in the comments below, or start a conversation by posting to your Activities page.