No matter what age you were when you were diagnosed with myasthenia gravis (MG), it’s natural to wonder what’s going to happen in the future. Will the autoimmune disease get worse, or could it get better? Will you be dealing with symptoms like eye muscle weakness, double vision, odd facial expressions, and drooping eyelids forever?
While there’s no way to know for sure what is going to happen to you or your loved one, there are some important trends and possibilities that you should know about. That way, you’ll be ready for whatever the future might bring. You can also do everything in your power to keep MG under control as you get older.
Most people find that their symptoms of myasthenia gravis get worse over time. However, symptoms tend to reach their worst point within a few years of when they start. If you or your loved one has recently begun having symptoms of this autoimmune disorder, it may continue to get worse. If you’ve already been living with MG for several years, the odds that it will get worse are lower.
Sometimes, people living with myasthenia gravis notice extreme fluctuation in their symptoms. They may get worse for a while, then improve, then get worse again. If this is how you experience the condition, your symptoms may continue to change as you get older.
Myasthenia gravis can also go into remission. This means that the symptoms disappear completely. There’s no good way to know if this will happen for you or your loved one, but it’s good to remember that it is possible.
That said, myasthenia gravis can always come back. Sometimes, it returns even after a person’s symptoms have been gone for years. It’s important to always be on the lookout for new symptoms, even if you’ve been in remission. Report new symptoms to your doctor and get treatment as soon as possible if symptoms return as you age.
While there’s no clear way to determine what your symptoms will do, some factors may make it more likely that you’ll experience frequent myasthenia gravis flare-ups or symptoms that get worse.
A 2023 study looked at the risk of flare-ups in adults with previously controlled MG and found it to be higher in people who:
Another factor that can influence your MG is the presence of the antibody muscle-specific kinase (MuSK), which may cause more severe symptoms. If you have concomitant diseases (other conditions alongside MG), treatment may be more challenging.
Having one or more of the risk factors above doesn’t necessarily mean your MG worsen as you age. However, it does mean that you need to be on the lookout for signs and symptoms, even if you go into remission. It also means that you and your neurologist need to do all you can to find the right treatment for you.
There are a number of things you can do to keep myasthenia gravis under control as you get older. You and your health care provider can work together to figure out the best path for you. Once you have a plan, you can take ownership of your own health and well-being.
There’s no single treatment that works for everyone living with myasthenia gravis. However, there are a variety of options, including immunosuppressive medications and steroids. Your neurology team will help you choose one based on factors like the severity of your myasthenia gravis, your medical history, possible side effects, and which treatments you’ve tried before.
One key aspect to successful treatment is sticking with the MG treatment regimen that you and your doctor decide on. You may need to plan ahead to take medications at the right time of day or plan for medication storage when you travel. Your doctor can help you make a plan that will work for you and help you keep your myasthenia gravis under control.
It’s easy to feel like you have way too many appointments when you live with myasthenia gravis, but all of them are important. Seeing your doctor or doctors regularly will ensure you get all of the testing, screening, and treatment that you need to keep the condition under control as you age.
Your doctor will want to monitor your MG as you age, but they'll also be keeping track of other conditions that can occur at the same time. Staying on top of all of this will help you feel better as you age.
A thymectomy is a surgery in which your thymus gland is removed. Some health experts think that it helps rebalance your immune system. Thymectomy is often recommended for specific types of MG for people younger than 65. About half of all people with MG who have a thymectomy experience remission. If a tumor called a thymoma is found on your thymus gland, surgery is necessary to remove it, regardless of your MG type.
Certain situations can worsen myasthenia gravis symptoms or even trigger a life-threatening myasthenic crisis. Identifying your specific triggers can help you manage flare-ups. Common triggers to watch for include:
You may want to keep a journal for a while so you can figure out what happens right before your MG gets worse. If you see a pattern, you can talk to your health care team and they can help you make changes. You should also make sure that all of your doctors know you live with myasthenia gravis so they don’t prescribe you any medicines that might make it worse.
It might be hard to think about your mental health when you’re living with MG symptoms, but doing so could actually help you feel better. People who are depressed, for instance, tend to experience worse myasthenia gravis symptoms. When those people get treatment for their depression along with treatment for their MG, they often feel better.
This is particularly important in light of the fact that myasthenia gravis can lead to depression, anxiety, and post-traumatic stress disorder (PTSD). The worse the myasthenia gravis, the more likely people are to experience all three of these mental health difficulties. This means that you may need to do extra work on your mental health if you’re experiencing significant symptoms. Managing it all now, though, could help you feel better as you age.
If you’re concerned about what might happen with myasthenia gravis as you age, talk to your MG specialist about it. They can help you with more than just medical questions. They can give recommendations to help you have the best quality of life possible. Your doctor can help you with medication decisions, questions about disability or retirement with MG, and referrals to other specialist teams. Don’t hesitate to ask them when you need help.
MGteam is the social network for people with myasthenia gravis and their loved ones. Members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.
How have your myasthenia gravis symptoms changed as you’ve gotten older? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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