The COVID-19 pandemic impacted the treatment course and general health of patients with myasthenia gravis (MG) through limited access to care, shortened appointment availability, and patient hesitation to attend clinical settings due to a fear of exposure, according to a new study published in Therapeutic Advances in Rare Disease.

Patients with MG responding to a cross-sectional survey indicated more trouble accessing care, especially at the beginning of the pandemic. Patients did not report an increase in symptoms but did indicate a worsening of some pre-existing symptoms such as difficulty breathing, nausea, and abdominal pain.

Almost 20% of patients reported treatment delays or had interruptions to their treatment that they attributed to the pandemic. Hospitalizations for symptoms were avoided by 10% of respondents due to a fear of contracting COVID-19 in a clinical setting.

Patients with MG typically receive treatment with corticosteroids and immunosuppressants which could potentially increase their risk of COVID-19 infection, the authors said. From the surveys, only 7 out of the 594 patients had confirmed cases of COVID-19, however. Of those confirmed cases, 4 were hospitalized with 3 requiring intubation and mechanical ventilation.

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Another 94 patients (16%) indicated that they did not know if they had COVID-19 or not. These patients did report increased headaches (68%), muscle aches (62%), shortness of breath (58%), and weakness (50%). Roughly 25% of these patients were unable to obtain an appointment while 39% had a telemedicine appointment.

“Our investigation contributes to ever-increasing characterization of the impact of the Covid-19 pandemic on all aspects of society, including the rare disease community,” the authors said. “Patients with MG complained of worse access to medical care, including challenges in diagnosis of suspected Covid-19 infection, and movement to telemedicine evaluations.”

The study utilized data collected from the Rare Disease Clinical Research Network online survey designed to assess the impact of COVID-19 on the rare disease community. The survey was available from May 2, 2020, to December 15, 2020, and received 3414 responses with 594 participants having MG.

The survey also found that 60% of respondents were female and 89% identified as being white. The authors stated that the lack of racial diversity in respondents may have been due to several factors including lack of internet access for minorities, economically disadvantaged individuals not having the time to take a survey, and a lack of diversity in MG advocacy groups.


Gutierrez G, Girma H, Kuhnell P, Macaluso M, Kaminski HJ. Impact of the Covid-19 epidemic on a US sample of patients with myasthenia gravis. TAIRD. Published online March 10, 2022. doi:10.1177/26330040221082673