A Traveler’s Journey with Generalized Myasthenia Gravis

This post is sponsored in partnership with UCB.

Written by UCB |

Shanaz’s friends and family know her as an adventurer, someone who books a flight across the world for the weekend and is right back to work on Monday.

“My entire life, I had always been go, go, go,” Shanaz shares. “Even in the face of challenges, nothing stopped me from achieving my goals.”

But that drive was put to the test when Shanaz began experiencing unexplained symptoms, including a strained voice, fatigue, and at times, double vision. Initially, she blamed the stress of her busy lifestyle. Yet, each time she sought answers, the initial diagnoses she received never truly matched her experiences.

A vacation to Rome, Italy, soon changed everything. While posing for photographs with friends, Shanaz realized she couldn’t smile. A few days later, she lost her vision and her ability to speak and swallow.

“I took the next plane home and made an appointment with my doctor to find the correct diagnosis,” she explains. “Many referrals later, I finally met a neurologist who diagnosed me with generalized myasthenia gravis (gMG), confirmed by a positive MuSK antibody test.”

gMG is a rare autoimmune disease that can weaken muscles throughout the entire body, with symptoms that make daily life challenging, including difficulty with chewing, talking, swallowing, breathing, brushing teeth or hair, rising from a chair, as well as double vision and eyelid droop.1-3 Many people living with gMG may wait a year or more for an accurate diagnosis, spending significant time looking for answers.4

Along Shanaz’s journey, she came to recognize that gMG is often unpredictable and no two cases are exactly alike. “I often compare gMG to a slow roller coaster,” she says. “There are times when your symptoms are improving and going up and up, and then everything can stagnate. Nobody’s course is the same.”

Determined to find the right treatment option for her, Shanaz’s research led her to discover RYSTIGGO® (rozanolixizumab-noli), a treatment specifically indicated for adults with anti-AChR or anti-MuSK antibody positive gMG.5 After talking with her neurologist, she started treatment with RYSTIGGO.

While being misdiagnosed initially delayed her access to effective treatment, Shanaz is grateful that she continued to advocate for herself. “For me, RYSTIGGO makes a difference in my day-to-day life and has improved my gMG symptoms overall. As someone with a lot of life ahead of me, being able to focus on my kids, work, and the activities I love is incredibly important,” she explains. “While this is my experience, individual results may vary.”

RYSTIGGO can cause side effects, including an increased risk of infection or aseptic meningitis. Swelling and rash have also occurred. The most common side effects of RYSTIGGO include headache, infections, diarrhea, fever, hypersensitivity reactions, and nausea. It’s important to talk to your doctor about your options, as well as their benefits and risks.

For others living with gMG, Shanaz offers important advice: “Advocate for yourself, trust your instincts, and be persistent in seeking answers.” Along her journey, she has also come to learn the importance of balance. “I make sure to rest, rest, rest. By learning to recognize my limits today, I can get where I want to go in the future.”

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

Shanaz 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.
  • Pregnancy Registry: There is a pregnancy exposure registry that monitors pregnancy outcomes in women exposed to RYSTIGGO during pregnancy. Patients or their healthcare providers may contact UCBCares® at 1-844-599- CARE (2273) or email [email protected], so that information about the exposure of RYSTIGGO during pregnancy and/or breastfeeding can be collected.

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. Hansen JS, et al. Mortality in myasthenia gravis: A nationwide population-based  follow-up study in Denmark. Muscle Nerve. 2016;53:73–7.
  2. Wolfe GI, et al. Myasthenia gravis activities of daily living profile. Neurology.  1999
  3. Juel, V. C., & Massey, J. M. (2007). Myasthenia gravis. Orphanet Journal of Rare  Diseases, 2, 44. https://doi.org/10.1186/1750-1172-2-44
  4. Mahic, M., Bozorg, A.M., DeCourcy, J.J. et al. Physician-Reported Perspectives on  Myasthenia Gravis in the United States: A Real-World Survey. Neurol Ther 11,  1535–1551 (2022).
  5. RYSTIGGO (rozanolixizumab-noli) U.S. Prescribing Information. Smyrna, GA:  UCB, Inc.

RYSTIGGO® and UCBCares® are registered trademarks of the UCB Group of Companies.  ©2026 UCB, Inc., Smyrna, GA 30080. All rights reserved. US-RZ-2600286

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