Imagine waking up one day and realizing your muscles respond with no unexpected weakness or sudden fatigue. For many with myasthenia gravis (MG), this isn’t just a dream but a potential reality called remission.

Myasthenia gravis is an autoimmune disease, meaning the body’s immune system mistakenly attacks its own healthy tissues. The condition causes muscle weakness, which can make daily life difficult. However, modern treatments offer hope for significant symptom management of myasthenia gravis and even complete remission.

A number of MGteam members have posted questions about remission, with one writing, “How often does MG go into remission?” Another wondered, “Is it possible to come out of remission? I was tested a few years ago, and the doctor said I had no signs in the electrode test?”

This article will explore what remission from MG looks like and some personal stories from MGteam members.

Understanding Myasthenia Gravis Remission

Remission in myasthenia gravis means a significant reduction or complete absence of symptoms. This can allow for lower doses of medication or, in some cases, stopping certain treatments under a doctor’s supervision. Remission can happen with or without ongoing treatment, and several factors may contribute to it.

During remission, many people can return to their normal daily activities without the muscle weakness and fatigue MG typically causes. While improving symptoms is typically the main goal of treatment, remission isn’t guaranteed and looks different for everyone. MG affects each person uniquely, and the path to remission — if it happens — varies widely.

According to the Myasthenia Gravis Foundation of America, remission is classified into different categories based on the manifestation, or signs, of symptoms:

• Complete stable remission (CSR) — No symptoms for over a year without needing treatment
• Pharmacological remission — No symptoms but still taking some form of treatment, such as immunosuppressive therapy
• Minimal manifestation levels — Some MG symptoms may still be present but do not significantly impact daily life

The best way to understand remission is through the experiences of those who have lived it. Some people achieve long-lasting remission, while others have symptom-free periods followed by flare-ups.

Members of MGteam have shared their own stories, with one writing, “I am in remission after being diagnosed about two years ago. No more mask wearing and in two months I will be taking zero medication, only as needed. Phew!”

“I was diagnosed in 2009 and remain in remission,” mentioned one individual.

Another added, “I went into remission, and it was great until 2022. It came back with a vengeance. I’ve been in recovery since.”

Remission Rates and Success Factors

Research indicates that up to 40 percent of individuals with MG may achieve complete remission. Several factors can influence both the likelihood of achieving remission and its duration.

Age at Diagnosis

People with early disease onset, particularly those diagnosed with MG before age 40, generally have better chances of achieving remission. In addition, those who are diagnosed with MG within one year of symptom onset also have better odds of reaching remission.

Antibody Status

The type of antibodies present can significantly impact remission chances. According to a 2022 study, after an average follow-up of 9.8 years:

• 42.6 percent of those with anti-acetylcholine receptor (anti-AChR) antibodies achieved remission or had significantly fewer symptoms. This antibody type also responded well to a variety of drug treatments.
• 100 percent of those with anti-muscle-specific receptor tyrosine kinase (anti-MuSK) antibodies reached remission or had minimal symptoms. However, they responded only to certain drug types.
• 10 percent of individuals who were seronegative (those without detectable antibodies) reached remission or had symptom improvements. Eighty percent of individuals who were seronegative didn’t respond to any drug they took.

Thymus Status

The thymus gland plays a key role in the immune system, and abnormalities in this gland are linked to myasthenia gravis (MG). Some people with MG undergo a thymectomy (surgical removal of the thymus), which may increase their chances of remission.

One study from 2023 found that 47.8 percent of participants reached remission in an average of 26.2 months after undergoing a robotic thymectomy. A robotic thymectomy uses a robotic system to remove the thymus gland through small incisions and has been found to allow for greater precision and faster recovery compared to traditional open surgery. Among study participants, 8.4 percent reached complete stable remission following the procedure, and 39.4 percent reached pharmacological remission. However, thymectomy doesn’t work for everyone, and outcomes can vary.

Pathways to Remission

Achieving remission typically involves a comprehensive MG treatment approach that may include medications, surgery, and lifestyle adjustments.

Medications

Several medication options may help people reach remission, such as:

• Anticholinesterase (AChE) inhibitors, such as pyridostigmine (Mestinon) — These help improve muscle strength by increasing the availability of acetylcholine, a neurotransmitter (chemical messenger) needed for muscle contraction.
• Immunosuppressants such as corticosteroids like prednisone — These drugs help reduce immune system activity to prevent it from attacking the neuromuscular junction (the connection between nerves and muscles that allows movement).
• Newer biological therapies such as eculizumab (Soliris) and ravulizumab (Ultomiris) — These target specific parts of the immune system to block the attack on muscles more precisely.

The specific combination and duration of treatments vary based on individual factors such as age, disease severity, antibody status, and overall health condition.

Surgery

Thymectomy has proven particularly effective for certain people, such as those with an enlarged thymus. The effects of thymectomy procedures may reduce or eliminate the need for medications and hospital visits. Generally, people can expect their MG symptoms to improve within the few months following surgery and up to one to two years or more.

In a small retrospective study from 2022, out of 94 individuals with MG, 72 percent achieved remission for at least a year following a thymectomy.

However, not everyone experiences significant symptom relief after surgery, and the decision to undergo a thymectomy should be made with a doctor based on individual factors.

A MGteam member shared, “My daughter had her thymus removed (no tumors or anything) last year in October. Since then, she has not gone into remission, and she has improved in a lot of things, but … she still has double vision, not enough endurance for her age, chokes in her saliva very often and other symptoms still.”

Another member wrote, “Had a thymectomy performed. Double vision was gone immediately. I had absolutely zero pain in my chest after surgery. They tied everything back together with a titanium plate. Seriously, no pain even the day after surgery. I would highly recommend it. Wow, what a life changer.”

Lifestyle Changes

While lifestyle changes alone won’t cause remission, they can support overall health and well-being, which can support treatment success. You could try the following:

• Exercising regularly (as advised by your healthcare provider)
• Getting enough rest
• Eating a balanced diet
• Avoiding your known triggers

A few MGteam members have shared advice for some lifestyle changes, with one mentioning “I try now to look for my triggers and try to manage and plan my day around them.”

“Always listen to your body and be patient. Take the time to nap or stay still. Learn your triggers, and do the best you can to mitigate them. Communicate with your family, friends, or caregiver what sets you off, anxiety, stress, heat or cold, and get them onboard to help you maintain. I hear so many people say ‘But you look so normal.’ They need to hear and understand your symptoms and struggles so they can be more helpful,” another added.

Duration of Remission

The length of remission can vary significantly among individuals. For example, some people maintain remission for several years or longer, while others may experience relapses or flare-ups that require a temporary return to treatment. Regular symptom monitoring is essential even during remission to catch and address any early signs of relapse.

Working With Your Healthcare Team

Achieving and maintaining remission requires close collaboration with your healthcare team. Consider these important steps:

• Discuss remission as a treatment goal with your neurologist.
• Develop a clear treatment plan with defined milestones.
• Maintain regular follow-up appointments, even when you’re feeling well.
• Report any new or returning symptoms right away.
• Follow medication schedules exactly as prescribed by your doctor.
• Keep detailed notes of your symptoms and any potential triggers.

One MGteam member shared, “When I think things might be slowing down symptom-wise, bam! It’s back again at full strength. I really believe, stress, heat, cold and sickness aggravate MG!”

While not everyone with MG will achieve complete remission, modern treatments have significantly improved the outlook and quality of life for many people. The landscape of MG treatment continues to grow, with ongoing research expanding treatment options and understanding of the condition.

Remember that your journey with MG is unique, and working closely with your healthcare team is essential for developing the most effective strategy for achieving and maintaining remission. As one MGteam member in remission put it, “It’s a journey. Advocate for yourself. If you don’t understand something the doctor is telling you, ask more questions, and make sure you understand the answers.”

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, more than 2,000 members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Have you achieved remission with your myasthenia gravis? What tips have worked best for you? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.