“There is Life After This Disease” – One Woman Navigating Myasthenia Gravis

Tina Bruning was looking forward to retiring after 30 years of working at her local school district in Ellsworth, Kansas. She had plans to travel with her husband, spend time with her five grandkids, and continue her healthy lifestyle of exercise and clean eating.

Shortly after she celebrated her retirement, Tina started to have some concerning health issues. When she was driving her granddaughter to school one day, she experienced double vision. Soon after, she noticed her eyelids starting to droop, and her feet started giving out when she ran.

“This really alarmed me,” says Tina. “I called my doctor immediately when I started experiencing those symptoms. As you can imagine, my retirement didn’t start out as I had hoped.”

Tina’s doctor took her concerns seriously and tested her for a possible stroke or tumor. When those tests came back negative, Tina’s son-in-law, who happens to be a paramedic, did some research. He suspected that she had symptoms of a rare disease and encouraged Tina to ask her doctor about it. Tina was swiftly sent to a neurologist’s office, where she was diagnosed with generalized myasthenia gravis.

Myasthenia gravis (MG) is a rare autoimmune disease with no cure that results from a problem signaling between the nerves and muscles, causing muscle weakness.^1-3 Generalized myasthenia gravis (gMG), is a more severe form of MG that can weaken muscles throughout the entire body.⁴ gMG can make day-to-day activities like talking, chewing, swallowing, breathing, walking, and brushing teeth very difficult, due to muscle weakness and fatigue.^5,6 The disease is caused by harmful antibodies in the immune system, and anti-acetylcholine receptor (AChR) antibodies are the most common cause of gMG.⁷

While she felt lucky to be diagnosed quickly, many challenges were ahead for Tina, and her life was heavily impacted. Before starting treatment, Tina had a thymectomy, a procedure to remove the thymus gland. Still, her condition worsened, and she had severe muscle weakness that led to her relying on a wheelchair. During this time, Tina relied on family, and she says her husband became her arms and legs.

“I couldn’t walk or hold my head or arms up,” Tina shares. “My husband had to take time off work to care for me. I also had problems speaking.”

Over the years, Tina was prescribed multiple treatments, which were not effective for her. Still, she kept fighting, and had faith that there had to be something that might work for her.

It was only after her doctor prescribed ZILBRYSQ (zilucoplan), a self-administered treatment for gMG, that she experienced improvement in her symptoms. ZILBRYSQ is the first FDA-approved, self-administered treatment for adults with generalized myasthenia gravis (gMG) who are anti-AChR antibody positive.^8.9  

ZILBRYSQ targets a key cause of gMG symptoms.⁸ It is a once-daily, subcutaneous (under the skin, not in the muscle) injection that can be administered at home or away once you or your caregiver receive proper training from your healthcare provider.⁹

Since starting ZILBRYSQ for her gMG, Tina feels like she can now have the retirement she envisioned. The ability to self-inject at home has been helpful for Tina, who lives a few hours away from her doctor. She can also travel without missing a treatment. While this was the case for Tina, results may vary.

ZILBRYSQ may lower the ability of your immune system to fight infections and increases your chance of getting serious meningococcal infections. ZILBRYSQ may also increase the risk of other types of serious infections caused by encapsulated bacteria. Pancreatitis and pancreatic cysts have happened in people who use ZILBRYSQ.⁹

The most common side effects of ZILBRYSQ include injection site reactions, upper respiratory tract infections, and diarrhea.⁹ Talk to your doctor to choose the right treatment plan for you.

“People need to see that there is life after this disease,” Tina shares. “It’s important to be an advocate for yourself, to see treatment options are out there if yours isn’t working for you.”

To learn more about gMG and ZILBRYSQ, visit www.zilbrysq.com or speak with your doctor.

Tina 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 ZILBRYSQ 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 INCLUDING BOXED WARNING

What is the most important information I should know about ZILBRYSQ?

ZILBRYSQ is a medicine that affects part of your immune system. ZILBRYSQ may lower the ability of your immune system to fight infections.

• ZILBRYSQ increases your chance of getting serious meningococcal infections caused by Neisseria meningitidis Meningococcal infections may quickly become life-threatening or cause death if not recognized and treated early.
  • You must complete or update your meningococcal vaccine(s) at least 2 weeks before your first dose of ZILBRYSQ.
  • If you have not completed your meningococcal vaccines and ZILBRYSQ must be started right away, you should receive the required vaccine(s) as soon as possible.
  • If you have not been vaccinated and ZILBRYSQ must be started right away, you should also receive antibiotics to take for as long as your healthcare provider tells you.
  • If you had a meningococcal vaccine in the past, you might need additional vaccines before starting ZILBRYSQ. Your healthcare provider will decide if you need additional meningococcal vaccines.
  • Meningococcal vaccines do not prevent all meningococcal infections. Call your healthcare provider or get emergency medical care right away if you get any of these signs and symptoms of a meningococcal infection:
    • fever
    • fever with high heart rate
    • headache and fever
    • confusion
    • muscle aches with flu-like symptoms
    • fever and a rash
    • headache with nausea or vomiting
    • headache with a stiff neck or stiff back
    • eyes sensitive to light

Your healthcare provider will give you a Patient Safety Card about the risk of serious meningococcal infection. Carry it with you at all times during treatment and for 2 months after your last ZILBRYSQ dose. Your risk of meningococcal infection may continue for several weeks after your last dose of ZILBRYSQ. It is important to show this card to any healthcare provider who treats you. This will help them diagnose and treat you quickly.

ZILBRYSQ is only available through a program called the ZILBRYSQ Risk Evaluation and Mitigation Strategy (REMS). Before you can receive ZILBRYSQ, your healthcare provider must:

• enroll in the ZILBRYSQ REMS program.
• counsel you about the risk of meningococcal infections.
• give you the Patient Guide, including information about the signs and symptoms of meningococcal infection.
• give you a Patient Safety Card about your risk of meningococcal infection, as discussed above.
• make sure that you are vaccinated against serious infections caused by meningococcal bacteria and that you receive antibiotics if you need to start ZILBRYSQ right away and you are not up to date on your vaccines.

ZILBRYSQ may also increase the risk of other types of serious infections caused by encapsulated bacteria, including Streptococcus pneumoniae, Haemophilus influenzae, and Neisseria gonorrhoeae.

• Certain people may be at risk of serious infections with gonorrhea. Talk to your healthcare provider about whether you are at risk for gonorrhea infection, about gonorrhea prevention, and about regular testing.

Call your healthcare provider right away if you have new signs or symptoms of infection.

Who should not use ZILBRYSQ?

• Do not use ZILBRYSQ if you have a serious meningococcal infection when you are starting ZILBRYSQ treatment.

Before you use ZILBRYSQ, tell your healthcare provider about all of your medical conditions, including if you:

• have an infection or fever.
• are pregnant or plan to become pregnant. It is not known if ZILBRYSQ will harm your unborn baby.
• are breastfeeding or plan to breastfeed. It is not known if ZILBRYSQ passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you use ZILBRYSQ.

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 ZILBRYSQ?

ZILBRYSQ may cause serious side effects, including:

• See “What is the most important information I should know about ZILBRYSQ?”
• Inflammation of the pancreas (pancreatitis) and other pancreatic problems. Pancreatitis and pancreatic cysts have happened in people who use ZILBRYSQ. Your healthcare provider will do blood tests to check your pancreas before you start treatment with ZILBRYSQ.
  • Call your healthcare provider right away if you have pain in your stomach area (abdomen) that will not go away. Your healthcare provider will tell you if you should stop using ZILBRYSQ. The pain may be severe or felt going from your abdomen to your back. The pain may happen with or without vomiting. These may be symptoms of pancreatitis.

The most common side effects of ZILBRYSQ include:

• injection site reactions.
• upper respiratory tract infections.
• diarrhea.

Tell your healthcare provider about any side effect that bothers you or that does not go away.

These are not all the possible side effects of ZILBRYSQ. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at www.fda.gov/medwatch or 1-800-FDA-1088. You may also report side effects to UCB, Inc. by calling 1-844-599-CARE [2273].

See the detailed Instructions for Use that comes with ZILBRYSQ for information on how to prepare and inject a dose of ZILBRYSQ, and how to properly throw away (dispose of) used ZILBRYSQ prefilled syringes.

INDICATION

What is ZILBRYSQ?

• ZILBRYSQ is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive.
• It is not known if ZILBRYSQ is safe and effective in children.

Please see the full Prescribing Information and Medication Guide for ZILBRYSQ, including the Boxed Warning regarding serious meningococcal infections. Please see the Instructions for Use for the ZILBRYSQ Single-Dose Prefilled Syringe. Talk to your healthcare provider about your condition or your treatment. For more information, go to www.ZILBRYSQ.com or call 1-844-599-2273.

References

1. Juel VC, Massey, JM. Myasthenia gravis. Orphanet J Rare Dis. 2007; 2:44.
2. Howard JF Jr., et al. Myasthenia gravis: The role of complement at the neuromuscular junction. Annals of the New York Academy of Sciences. 2018.
3. Myasthenia Gravis Foundation of America. 2023. Clinical overview of MG. https://myasthenia.org/Professionals/Clinical-Overview-of-MG. Accessed October 2023.
4. Xin, et al. Examining the Impact of Refractory Myasthenia Gravis on Healthcare Resource Utilization in the United States: Analysis of a Myasthenia Gravis Foundation of America Patient Registry Sample. Journal of Clinical Neurology. 2019.
5. Hansen JS, et al. Mortality in myasthenia gravis: A nationwide population-based follow-up study in Denmark. Muscle Nerve. 2016;53:73–7.
6. Wolfe GI, et al. Myasthenia gravis activities of daily living profile. Neurology. 1999.
7. Hehir M, et al. Generalized Myasthenia Gravis: Classification, Clinical Presentation, Natural History, and Epidemiology, Neurologic Clinics. 2018
8. 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.
9. ZILBRYSQ [Prescribing Information]. Smyrna, GA: UCB, Inc.

ZILBRYSQ^® is a registered trademark of the UCB Group of Companies.

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