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From Medical Student to Patient to Advocate: One Man’s Journey Living with Generalized Myasthenia Gravis

Sponsored by: UCB

Amid the ups and downs of medical school, Ronak faced a new challenge—being diagnosed with generalized myasthenia gravis, a rare neuromuscular condition that can cause severe muscular weakness.

Ronak Cropped Headshot[16]
Provided by Ronak

As Ronak, 37, prepared for his medical-school board exams, he could barely keep his eyes open. Like many students, he found that balancing lectures, labs, and rotations left little room for rest. But no matter how much he slept or how much coffee he drank, his eyelids continued to droop.

For years, Ronak pushed through his busy schedule without addressing these issues. However, they eventually became hard to ignore. Outside of his studies, he began having difficulty doing things he loved—from going to the gym to simply spending time with friends and family—as he experienced extreme fatigue and muscle weakness. He also experienced instances of difficult breathing and even choking episodes when eating.

While he realized he needed help, even with his medical knowledge, getting a diagnosis was difficult. When he sought care from other physicians, testing was inconclusive. Eventually, he was able to meet with a neuro-ophthalmologist, who came to a more concrete diagnosis: Ronak was living with generalized myasthenia gravis (gMG).

“Receiving a diagnosis was a bittersweet moment,” Ronak says. “On one hand, I finally could figure out a plan forward. On the other hand, my suspicions that I could be living with gMG were correct all along. I had been close to the diagnosis for many years, and that delay caused a significant impact on my ability to function—particularly in school.”

Stress,and,tired,man,under,mental,pressure,while,reading,book
Image courtesy Shutterstock

Myasthenia gravis (MG) is a rare, chronic autoimmune disorder involving the nerves and the muscles. In people living with MG, voluntary muscles don’t respond well to the signals sent by the brain.1-4

A more severe form of MG, gMG, may include symptoms such as severe muscular weakness that can result in life-threatening weakness of the muscles of respiration, double vision, drooping eyelids, and difficulty swallowing, chewing and talking.6,7 However, these symptoms can vary greatly, so individuals experience gMG in very personal ways. This can often lead to delayed or incorrect diagnoses,1,5 including mental-health conditions like depression.9

Ronak experienced more than the physical symptoms of gMG. He also faced challenges due to the unpredictable nature of gMG. “Everything was difficult—the mental drain of navigating the health-care system, the social isolation when my symptoms made me not want to leave the house, and the mix of emotions when even good days quickly turned bad,” he explains. “It was difficult to not feel stuck in the past, holding out hope for a vision of myself from before the gMG diagnosis.”

Doctor,consulting,male,patient,,working,on,diagnostic,examination,on,men's
Image courtesy Shutterstock

Following his delayed diagnosis, Ronak came to understand the importance of advocating for himself. He made a concerted effort not only to engage the right providers but also to be a more active participant in his care moving forward. He worked with several doctors over the years and eventually formed a partnership with Dr. Suraj Muley, Medical Director of Neurology at the Bob Bové Neuroscience Institute at HonorHealth in Scottsdale, Arizona. They began to find the right treatment together.

According to Dr. Muley, the varied symptoms of gMG make diagnosis difficult and can also make finding the right treatment even more challenging.

“It is important to match the patient’s disease profile and comorbidities with the appropriate treatment,” Dr. Muley explains. “My patient had tried several medications and required very high doses of steroids. There was a need to find another treatment.”

In late 2023, after 15 years of trial and error, Dr. Muley recommended RYSTIGGO® (rozanolixizumab-noli), a prescription medicine that had just been approved by the U.S. Food and Drug Administration (FDA) to treat adults with gMG who are anti-acetylcholine receptor (anti-AChR) antibody positive or anti-muscle-specific tyrosine kinase (anti-MuSK) antibody positive. These are the two most common subtypes of gMG.8

“In my opinion, I think RYSTIGGO is a good option for patients with gMG,” says Dr. Muley.

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Image Courtesy Shutterstock

Since taking RYSTIGGO, Ronak’s symptoms have improved. While this was the case for Ronak, results may vary. The most common side effects of RYSTIGGO include headache, infections, diarrhea, fever, hypersensitivity reactions and nausea. Talk to your doctor to choose the right treatment plan for you.

Ronak now works for an organization that supports remote cardiac monitoring, allowing him to leverage his medical degree to serve patients. He takes time to share insights from his own journey when meeting patients, encouraging them to be engaged in their care.

“I encourage all patients to do their research and ask pointed questions when engaging with their care teams,” Ronak explains. “I may have had the benefit of extra medical knowledge from my time as a student, but the important part is finding the right people who can help advocate for you. It may be a friend or family member. It may be someone at a provider’s office. Sometimes all it takes is the right support.”

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

Ronak 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 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.

RYSTIGGO INDICATION AND 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 acetylcholine receptor (anti-AChR) antibody positive or muscle-specific tyrosine kinase (anti-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 https://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 Institute of Neurological Disorders and Stroke. Myasthenia gravis fact sheet. https://www.ninds.nih.gov/health-information/disorders/myasthenia-gravis. Accessed: December 2024

2. Myasthenia Gravis Foundation of America. https://myasthenia.org/MG-Education/MG-Quick-Facts. Accessed: December 2024

3. Conquer Myasthenia Gravis. What is MG? https://www.myastheniagravis.org/about-mg/what-is-mg/. Accessed: December 2024

4. British Medical Journal (BMJ). Best Practice Myasthenia gravis 2018. Accessed: December 2024

5. McQuillen MP. Ocular Myasthenia Gravis. Ach Neurol. 1997;54(3):229. Accessed: December 2024

6. Myasthenia Gravis Foundation of America. Clinical Overview of MG. https://myasthenia.org/Professionals/Clinical-Overview-of-MG. Accessed: December 2024

7. Hansen JS, et al. Mortality in Myasthenia Gravis: A nationwide population-based follow-up study in Denmark. Muscle Nerve. 2016;53:73-77. Accessed: December 2024

8. RYSTIGGO® U.S. Prescribing Information

9. UCB Data on file – Real Chemistry 2021. The MG Patient Experience.

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RYSTIGGO® is a registered trademark of the UCB Group of Companies.
©2025 UCB, Inc., Smyrna, GA 30080. All rights reserved.
Date of preparation: January 2025