Broadly, the guidelines suggest that people with MG or LEMS should continue on their current therapies and take extra precautions to minimize the chance of infection (e.g. social distancing). Treatment decisions should be made collaboratively between patients and their healthcare providers, according to the International MG/COVID-19 Working Group.
The group’s recommendations were published in an article, “Guidance for the management of myasthenia gravis (MG) and Lambert-Eaton myasthenic syndrome (LEMS) during the COVID-19 pandemic,” in the Journal of the Neurological Sciences.
Both MG and LEMS are caused by immune response attacks on the body’s own tissues. As such, treatment for these conditions often involves so-called immunosuppressive or immunomodulatory therapies, which reduce the activity of the immune system. However, because the immune system is important for fighting off invaders such as viruses, such therapies may also increase the risk of infection.
“No data currently exist on how COVID-19 affects people with myasthenia gravis (MG)/LEMS or patients with other diseases on immunosuppressive therapies,” the researchers wrote. “However, because most patients with MG are on immunosuppressive or immunomodulatory therapies and may also have respiratory muscle weakness, there is a theoretical concern that MG/LEMS patients may be at higher risk of contracting the infection or experiencing severe manifestations of COVID-19.”
The guidelines are based on information available up to March 23 and have been endorsed by the American Association of Neuromuscular & Electrodiagnostic Medicine.
They recommend people with MG or LEMS follow all national guidelines (those from the Centers for Disease Control and Prevention in the U.S. can be found here), as well as specific guidelines for high-risk groups, including minimizing person-to-person contact and washing hands regularly.
People with MG or LEMS should continue on their current therapies as directed, and not stop their medications without first talking to their healthcare providers.
Although there is currently no direct link between COVID-19 infection risk and taking immunosuppressive therapies — such as rituximab (sold as Rituxan in the U.S. and MabThera in Europe), azathioprine, and CellCept (mycophenolate mofetil) — the guidelines recommend that people on these therapies practice “extra-vigilant” social distancing, which includes avoiding public transportation and using alternatives to face-to-face consultations.
Delaying the start of cell depleting therapies such as rituximab was also recommended, as they may increase the risk of worsening myasthenic crises and contracting COVID-19. However, not initiating such treatments may outweigh the risk of severe viral infection for some patients, so discussions with their doctors are warranted.
To minimize person-to-person contact, treatments that require hospital trips — such as plasma exchange or infusion therapies — should be discussed with physicians, taking into account the risks/benefits of the therapy and the local incidence of COVID-19 infections. Infusions should be performed at home if possible.
As for those participating in clinical studies, “any decision regarding ongoing need for in-person evaluations and treatments under the clinical trial [should] be based with consideration for patients’ best interest,” the researchers wrote.
For people with MG or LEMS who develop COVID-19, standard care is recommended by the experts, who added that most infected individuals seem to have mild disease. However, if symptoms become severe, it may be necessary to reduce or pause immunosuppressive therapies. At present, there is no vaccine or data supporting any efficacious treatment for COVID-19, the researchers wrote.
“Importantly, treatment escalation or change decisions need to be individualized based on the relative severity of COVID-19 infection and MG/LEMS in consultation with local expert(s),” the scientists added. “[W]e encourage that patients contact their MG provider with questions and for further guidance.”
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