A Nurse’s Journey with generalized Myasthenia Gravis

Living with gMG

As a nurse supervisor and father with a passion for building furniture, William was used to being on his feet for hours on end. But after years of long hospital shifts assisting patients, time dedicated to his woodworking craft and chasing after an active 12-year-old, he began experiencing profound fatigue.

“Even simple things like walking and climbing stairs were tough. I didn’t have the grip strength to hold my woodworking tools. Speaking became so difficult that I couldn’t communicate with my patients,” shares William. “It was clear something was wrong.”

In March 2023, William underwent a thymectomy, a surgical procedure to remove the thymus gland. The surgery was for a thymoma, a rare cancer that develops in the thymus gland.¹ Still, his bloodwork showed signs of another problem – he was living with generalized myasthenia gravis (gMG).

William’s nursing experience provided a strong understanding of the complexities of myasthenia gravis (MG). MG is a rare, chronic, unpredictable autoimmune disorder that can result in life-threatening weakness of the muscles; gMG is a more severe form of MG that can weaken muscles throughout the entire body.^2-4 While this knowledge helped him avoid the misdiagnosis issues that patients often experience with the condition, he couldn’t prevent some of the symptoms often associated with gMG, including life-threatening weakness of the muscles of respiration, double vision, drooping eyelids, and difficulty swallowing, chewing, and talking.^4,5

After his diagnosis, William tried several treatments that provided some relief but never proved sufficient to manage his symptoms effectively. “It was frustrating because treatments left me drained and unable to get back to the activities I love,” he shares. “My symptoms weren’t just physical; they took an emotional toll too. I had to adjust to new limitations, pacing myself and managing my energy so I wouldn’t overdo it.”

Eventually, William’s doctor recommended RYSTIGGO^® (rozanolixizumab-noli), the first  FDA-approved treatment for adults with gMG, who are anti-AChR antibody positive or anti-MuSK antibody positive—the two most common subtypes of gMG.⁵ RYSTIGGO works by targeting neonatal Fc receptor (FcRn), a protein in your immune system which can extend the life of harmful antibodies that can cause gMG.^6-8

According to William’s doctor, switching to RYSTIGGO made an impact on William’s symptoms. While this was the case for William, results may vary.

“Working with my doctor to find the right treatment to manage my gMG symptoms has allowed me to focus on my family and passions. I’m still managing my gMG, but my experience at work has improved, and I feel more productive at the woodshop”. Before treatment, my mobility issues impeded my ability to complete my projects,” Willam shares. “I take pride in being an active participant in my daughter’s life, supporting her in her endeavors.”

Over the years, William has come to embrace his experience as an opportunity to shape the way he supports his patients, advising them to keep a positive outlook, no matter the challenges they may face.

“Living with gMG requires resilience. As a nurse, I always encourage my patients to celebrate the small wins and progress, because they can keep you motivated to keep pushing forward,” he shares.

gMG affects everyone differently, so it’s important to talk to your doctor about available treatment options, as well as their benefits and risks, to work together on a care management plan. You can visit RYSTIGGO.com for more information, including a doctor discussion guide to help initiate a conversation with your doctor about whether RYSTIGGO is right for you.

William is a member of the UCB Advocates Network and is a paid consultant.

This publication is sponsored by UCB for educational and informational purposes. The views and statements contained in this publication reflect the speaker’s opinion, experience, or professional/clinical experience. These views do not necessarily reflect the views of UCB. All trademarks, logos, and brand names are the property of their respective owners. Use of these names, trademarks, and brands does not imply endorsement or affiliation.

For more details about RYSTIGGO, see the Important Safety Information below. This information does not take the place of talking to your healthcare provider about your medical condition or your treatment.

IMPORTANT SAFETY INFORMATION

WHAT IS RYSTIGGO?
RYSTIGGO is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive or anti-muscle-specific tyrosine kinase (MuSK) antibody positive.

WHAT IS THE MOST IMPORTANT INFORMATION I SHOULD KNOW ABOUT RYSTIGGO (rozanolixizumab-noli)?
RYSTIGGO may cause serious side effects, including:

• Infection: RYSTIGGO may increase the risk of infection. In clinical studies, the most common infections were upper respiratory tract infections, COVID-19, urinary tract infections, and herpes simplex infections. Your healthcare provider should check you for infections before starting and during treatment with RYSTIGGO. Tell your healthcare provider if you have any history of infections. Tell your healthcare provider right away if you have signs or symptoms of an infection during treatment with RYSTIGGO. Some of the signs and symptoms may include fever, chills, frequent and/or painful urination, cough, runny nose, wheezing, shortness of breath, fatigue, sore throat, excess phlegm, nasal discharge, back pain, and/or chest pain.
• Aseptic Meningitis: RYSTIGGO could cause aseptic meningitis. Tell your healthcare provider right away if you develop any signs or symptoms of meningitis during treatment with RYSTIGGO such as severe headache, neck stiffness, drowsiness, fever, sensitivity to light, painful eye movements, nausea, and vomiting.
• Hypersensitivity Reactions: RYSTIGGO can cause swelling and rash. Your healthcare provider should monitor you during and after treatment and discontinue RYSTIGGO if needed. Tell your healthcare provider immediately about any undesirable reactions you experience after administration.

Before taking RYSTIGGO, tell your healthcare provider about all of your medical conditions, including if you:

• Have a history of infection or think you have an active infection
• Have received or are scheduled to receive a vaccine (immunization). The use of vaccines during RYSTIGGO treatment has not been studied, and the safety with live or live-attenuated vaccines is unknown. Administration of live or live-attenuated vaccines is not recommended during treatment with RYSTIGGO. Completion of age-appropriate vaccines according to vaccination guidelines before starting a new treatment cycle with RYSTIGGO is recommended.
• Are pregnant or plan to become pregnant or are breastfeeding or plan to breastfeed.

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 RYSTIGGO?
RYSTIGGO may cause serious side effects, including:

• See “What is the most important information I should know about RYSTIGGO?”

The most common side effects of RYSTIGGO include:

• headache
• infections
• diarrhea
• fever
• hypersensitivity reactions
• nausea

These are not all the possible side effects of RYSTIGGO. For more information, ask your healthcare provider or pharmacist. Tell your healthcare provider about any side effect that bothers you or that does not go away. Call your healthcare provider 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. You may also report side effects to UCB, Inc. by calling 1-844-599-CARE [2273].

Please see the full Prescribing Information and talk to your healthcare provider about your condition or your treatment.

For more information, go to www.RYSTIGGO.com or call 1-844-599-2273.

References

1. National Cancer Institute. Thymectomy. https://www.ncbi.nlm.nih.gov/books/NBK564302/. Accessed June 2025.
2. Juel VC, Massey, JM. Myasthenia gravis. Orphanet J Rare Dis. 2007; 2:44.
3. Howard JF Jr., et al. Safety and efficacy of zilucoplan in patients with generalized myasthenia gravis (RAISE): A randomised, double-bind, placebo-controlled, phase 3 study. Lancet Neurol. 2023;22:395-406.
4. Hansen JS, et al. Mortality in myasthenia gravis: A nationwide population-based follow-up study in Denmark. Muscle Nerve. 2016;53:73–7.
5. Wolfe GI, et al. Myasthenia gravis activities of daily living profile. Neurology. 1999
6. RYSTIGGO [prescribing information]. Smyrna, GA: UCB, Inc.
7. Bril V, et al. Safety and efficacy of rozanolixizumab in patients with generalised myasthenia gravis (MycarinG): a randomised, double-blind, placebo-controlled, adaptive phase 3 study. Lancet Neurology. 2023
8. Wolfe GI, Et al. IgG regulation through FcRn blocking: A novel mechanism for the treatment of myasthenia gravis 202. Journal of the Neurological Sciences. 2021

RYSTIGGO® is a registered trademark of the UCB Group of Companies.

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