Advocate For Yourself, Then Go Live: Jayna’s gMG Story

After long days working for the state of Oklahoma, Jayna would often wind down by reading before bed – until one night, when she found her right eye closing on its own. She chalked it up to tiredness, assuming it was nothing serious and not raising it with her doctor at the time.

It wasn’t until years later, when her right eye began visibly drooping and symptoms rapidly worsened, becoming half-closed within a matter of days, that she sought medical care. When she eventually visited an eye care clinic, double vision was a new symptom. During the examination, the doctor appeared to have two heads. After ruling out a stroke, lab work and further assessments done by her doctor confirmed she was anti-acetylcholine receptor (AChR) antibody positive and living with generalized myasthenia gravis (gMG), a chronic autoimmune disease that disrupts communication between nerves and muscles.^1-3

Experiences of eyelid droop and double vision are common for people living with gMG.A variety of other symptoms can also make daily activities difficult – activities like talking, chewing, swallowing, and breathing. Severe muscle weakness can result in life-threatening respiratory issues.^4,5

While Jayna’s gMG initially impacted her eyesight, she also began experiencing new symptoms such as choking, weakness, shortness of breath, and a profound sensitivity to heat that transformed Oklahoma summers into a challenge rather than something to be enjoyed.

“I was one of those teenagers that loved being in the sun and getting a tan,” Jayna recalls. “So the biggest change for me has been that I do not handle heat very well. Even a quick trip outside to get my trash cans would leave me breathing hard from the heat.”

Then Jayna’s online gMG community introduced her to ZILBRYSQ® (zilucoplan), the first FDA approved, self-administered treatment for adults with gMG who are anti-AChR antibody positive. ZILBRYSQ is administered once daily as a subcutaneous (under the skin) injection using a portable, ready-to-use, prefilled syringe, allowing it to be self-administered at home. ZILBRYSQ can be self administered after proper training on how to prepare and inject the syringe. A healthcare team decides the total daily dose depending on body weight.⁶

After speaking with her doctor, Jayna switched medications. She settled into a new routine, giving herself the injection at home and recruiting her son to help her reach her preferred injection site in the back of her arm. Administration of ZILBRYSQ in the upper, outer arm should be performed by a caregiver.

While she’s incredibly grateful to have found a treatment that works for her, individual results may vary. Like all treatments, ZILBRYSQ can cause side effects, including injection site reactions, upper respiratory tract infections, and diarrhea, so it’s important to talk to your doctor about your treatment options, as well as their benefits and risks.⁶

Through it all, Jayna has held on to a philosophy she shares. “Instead of ‘why me’, I say, ‘why not me’? I’ve traveled. I’ve done things. I live my life.”

Whenever she comes across a newly diagnosed member of the gMG community, Jayna shares a similar message. “Don’t let it get the best of you. Read, learn, find your doctors, advocate for yourself, and then go live.”

You can visit ZILBRYSQ.com for more information to help determine with your doctor whether ZILBRYSQ is right for you.

Jayna 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 about ZILBRYSQ® (zilucoplan)⁶

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 bacteria. 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:

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.
  • Pregnancy Registry: There is a pregnancy registry for women who use ZILBRYSQ during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. If you become pregnant while taking ZILBRYSQ, you or your healthcare provider can contact UCBCares® at 1-844-599-CARE (2273) or email [email protected] to enroll or get more information about the registry.
• 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-FDA1088. 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. 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.
3. Howard JF Jr., et al. Myasthenia gravis: The role of complement at the
   neuromuscular junction. Annals of the New York Academy of Sciences. 2018.
4. Dresser L, Wlodarski R, Rezania K, Soliven B. Myasthenia gravis: epidemiology,
   pathophysiology and clinical manifestations. J Clin Med. 2021;10(11):2235.
   doi:10.3390/jcm10112235
5. Howard JF Jr., et al. Long-term safety, tolerability, and efficacy of
   efgartigimod (ADAPT+): interim results from a phase 3 open- label extension
   study in participants with generalized myasthenia gravis. Front. Neurol.
   14:1284444. doi: 10.3389/fneur.2023.1284444
6. ZILBRYSQ® (zilucoplan) U.S. Consumer Important Safety Information. Smyrna,
   GA: UCB, Inc.

 

ZILBRYSQ® and UCBCares® are registered trademarks of the UCB Group of Companies.
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