Living With gMG: Greg’s Treatment Journey

Greg, a patient living with AChR (acetylcholine receptor) antibody-positive generalized myasthenia gravis (gMG), believes his journey with gMG began as early as adolescence, but he was not formally diagnosed until his early 40s after months of progressive symptoms, including slurred speech and muscle weakness.

For many gMG patients like Greg, the journey to finding effective disease management can be long and complex, as patients seek solutions to help manage muscle weakness that can impact many areas of the body including the ability to speak, swallow, or get up from a chair.ⁱ

The treatment landscape for gMG continues to evolve, offering new options for individuals seeking to manage their gMG symptoms.ⁱ One of these treatments is IMAAVY® (nipocalimab-aahu), a prescription medicine approved for adults and children 12 years of age and older with anti-acetylcholine receptor (AChR) or anti-muscle-specific tyrosine kinase (MuSK) antibody-positive gMG.ⁱⁱ

IMAAVY® is not for everyone; only your healthcare provider can decide if it’s right for you. Do not use if you are allergic to IMAAVY®. Reactions have included cangioedema and anaphylaxis. IMAAVY® is a prescription medicine that may cause serious side effects, including infections, allergic (hypersensitivity) reactions, and infusion-related reactions. People treated with IMAAVY® should not receive live vaccines. Please read the Important Safety Information below and the Medication Guide for IMAAVY® to learn more about these and other risks associated with IMAAVY®. Discuss any questions you have with your healthcare Provider.

Greg shares how he navigated treatment discussions with his care team, what led him to explore IMAAVY, and the changes he has experienced since incorporating IMAAVY into his gMG management plan. His experience offers a glimpse into the evolving reality of living with gMG today.

Can you tell us about your gMG diagnosis? What were your initial symptoms, and how did you feel upon receiving the diagnosis? 

My journey began with symptoms that impacted basic, everyday functions. For example, my absolute favorite food was a milkshake, and suddenly, I was not able to suck through a straw because gMG weakens muscles. It also impacted my speech. We use 6,000 to 16,000 words a day, so imagine spending a day without speech. It was a scary, confusing time.

When the gMG diagnosis came, it was a mix of emotions. Realizing this was a chronic condition, especially with young children at home, I had to consider how this disease was going to affect my family and impact my job, which took a toll on me mentally. It took time for me to come to terms with the reality of living with gMG.

Before starting IMAAVY, what was your experience with managing your gMG symptoms? 

For about 10 years, I lived in denial that I had a chronic disease, but eventually, I shifted my mindset towards acceptance. I began to slowly adapt to my new reality and was able to return to work after taking time off following the diagnosis. I wish I had known earlier on that while gMG is life-changing, it is not life-ending.

How did you and your doctor decide on IMAAVY?

 I wanted to improve my gMG symptoms and ability to do everyday activities, like speaking and eating. This led me to transition my care to an academic neurology setting, and it was there that IMAAVY was suggested to me. 

Since starting IMAAVY, can you describe any changes you’ve noticed in your ability to manage your daily activities that were previously challenging due to your gMG symptoms? 

One of the biggest effects gMG had on me was communication. I work in residential real estate so being able to chat with my clients and colleagues is essential to my livelihood. Selling homes is all about communication, and referrals are key to long-term business. I’ll never forget meeting a family I had found a forever-home for, but because of my symptoms, I couldn’t even say hello. Needless to say, I had to forget that referral.

One of the best benchmarks of progress for me is the Myasthenia Gravis Activities of Daily Living (MG-ADL).^a Since starting IMAAVY, I noticed improvements in my daily functioning, including my ability to speak comfortably. Recently, an old friend of mine whom I hadn’t seen in years told me my speech has improved. What has helped? IMAAVY. 

What have you found to be most noteworthy or impactful about your experience with IMAAVY in helping to manage your gMG symptoms?

What’s most impactful is the improvement in my MG-ADL^a symptoms, including things we often take for granted, like being able to speak and eat. My wife and I are planning a bucket-list trip to Europe, including Rome, and that feels like a huge symbolic milestone in my journey. The idea of being able to comfortably eat and speak while on that trip allows me to truly look forward to and experience more moments like that. 

What support systems or resources have been helpful to you as you’ve navigated your gMG treatment plan? 

My family has been my primary support system throughout this entire 20-year journey, which has brought both ups and downs. Throughout the various obstacles and evolving treatments, what hasn’t changed is my wonderful wife of 37 years, our three great kids, and the patient community of people living with gMG. These support systems and my medical team have been essential in helping me navigate gMG.

If you could share one piece of advice or encouragement with another gMG patient who is exploring their treatment options, what would it be? 

I would encourage them to embrace adaptability and perspective. Live life the way it comes to you: You have gMG, it does not have you.

It’s important to have open, honest discussions with your healthcare team, especially with specialists in academic settings, to explore all of your options. Don’t be afraid to pursue your goals despite changes and limitations. Find your community, laugh often, and remember that resilience, supported by good communication and care, can help you continue to live a meaningful life.

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Greg’s story reflects his individual experience, and results may vary. In a clinical study, MG-ADL^a total score improved on average by 4.7 points with IMAAVY + current gMG treatment and 3.3 points with placebo + current gMG treatment from baseline to Weeks 22, 23 and 24. Also, QMG^b total score improved on average by 4.9 points with IMAAVY + current gMG treatment and 2.1 points with placebo + current gMG treatment from baseline to Weeks 22 and 24.^ii,iii Current gMG treatment includes acetylcholinesterase inhibitors, steroids, or non-steroidal immunosuppressive therapies, taken together or separately.

IMAAVY may cause serious side effects including infections, allergic (hypersensitivity) reactions and infusion-related reactions. The most common side effects (≥10%) in people with gMG treated with IMAAVY include infections in the parts of your body used for breathing, swelling in your hands, ankles, or feet, and muscle spasms. Please refer to the full Important Safety Information for more information about the safety profile.

If you or a loved one is living with generalized myasthenia gravis and are exploring treatment options, talk to your healthcare provider about whether IMAAVY might be right for you.

In consideration of the time spent participating in the development of this article, Greg was paid honoraria by Johnson & Johnson.

Editor’s notes:

1. The MG-ADL scale assesses the impact of gMG on 8 daily-function items (talking, chewing, swallowing, breathing, brushing teeth or hair, rising from a chair, double vision, and eyelid droop) that are typically affected in gMG. A lower MG-ADL score can indicate improvement in the ability to perform these 8 activities of daily living.^iv,v
2. The QMG scale assesses muscle weakness based on 13 items. A lower QMG score can indicate improvement in muscle weakness or less muscle weakness.^iv

WHAT IS IMAAVY® (nipocalimab-aahu)?

IMAAVY® is a prescription medicine used to treat adults and children 12 years of age and older with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) or anti-muscle-specific tyrosine kinase (MuSK) antibody positive.

It is not known if IMAAVY® is safe and effective in children under 12 years of age.

IMPORTANT SAFETY INFORMATION 

What is the most important information I should know about IMAAVY®?

IMAAVY® is a prescription medicine that may cause serious side effects, including:

• Infections are a common side effect of IMAAVY® that can be serious. Receiving IMAAVY® may increase your risk of infection. Tell your healthcare provider right away if you have any of the following infection symptoms:

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fever chills shivering cough

sore throat fever blisters burning when you urinate

• Allergic (hypersensitivity) reactions may happen during or up to a few weeks after your IMAAVY® infusion. Get emergency medical help right away if you get any of these symptoms during or after your IMAAVY® infusion:

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a swollen face, lips, mouth, tongue, or throat difficulty swallowing or breathing

itchy rash (hives) chest pain or tightness

• Infusion-related reactions are possible. Tell your healthcare provider right away if you get any of these symptoms during or a few days after your IMAAVY® infusion:

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headache rash nausea fatigue

dizziness chills flu-like symptoms redness of skin

Do not receive IMAAVY® if you have a severe allergic reaction to nipocalimab-aahu or any of the ingredients in IMAAVY®. Reactions have included angioedema and anaphylaxis.

Before using IMAAVY®, tell your healthcare provider about all of your medical conditions, including if you:

• ever had an allergic reaction to IMAAVY®.
• have or had any recent infections or symptoms of infection.
• have recently received or are scheduled to receive an immunization (vaccine). People who take IMAAVY® should not receive live vaccines.
• are pregnant, plan to become pregnant, or are breastfeeding. It is not known whether IMAAVY® will harm your baby.

Pregnancy Safety Study. There is a pregnancy safety study for IMAAVY® if IMAAVY® is given during pregnancy or you become pregnant while receiving IMAAVY®. Your healthcare provider should report IMAAVY® exposure by contacting Janssen at 1-800-526-7736 or www.IMAAVY.com.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of IMAAVY®?

IMAAVY® may cause serious side effects. See “What is the most important information I should know about IMAAVY®?”

The most common side effects of IMAAVY® include: respiratory tract infection, peripheral edema (swelling in your hands, ankles, or feet), and muscle spasms.

These are not all the possible side effects of IMAAVY®. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please see the full Prescribing Information and Medication Guide for IMAAVY® and discuss any questions you have with your doctor.

Dosage Form and Strengths: IMAAVY® is supplied as a 300 mg/1.62 mL and a 1,200 mg/6.5 mL (185 mg/mL) single-dose vial per carton for intravenous injection.

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ⁱMyasthenia Gravis Clinical Overview. Access at: https://myasthenia.org/Professionals/Clinical-Overview-of-MG#DIAGNOSTIC
ⁱⁱIMAAVY [Prescribing Information]. Horsham, PA: Janssen Biotech, Inc.
ⁱⁱⁱAntozzi A, Vu T, Ramchandren S, et al. Safety and efficacy of nipocalimab in adults with generalised myasthenia gravis (Vivacity-MG3): a phase 3, randomised, double-blind, placebo-controlled study. Lancet Neurol. 2025;24(2):105–116. doi:10.1016/S1474-4422(24)00498-8
^ivWolfe GI Myasthenia gravis activities of daily living profile. Neurology. 1999;22;52(7):1487-9. doi: 10.1212/wnl.52.7.1487
^vMuppidi S, Silvestri NJ, Tan R, Riggs K, Leighton T, Phillips GA. Utilization of MG-ADL in myasthenia gravis clinical research and care. Muscle & Nerve. 2022;65(6):630-639. doi:10.1002/mus.27476