Managing Myasthenia Gravis During the COVID-19 Pandemic
Many people with myasthenia gravis or Lambert-Eaton myasthenic syndrome wonder how to stay safe right now. Our expert summarizes recently published guidance.
An international working group of myasthenia gravis experts recently published recommendations for managing myasthenia gravis (MG) and Lambert–Eaton myasthenic syndrome (LEMS) during the COVID-19 pandemic. Here's what you need to know.
Q: Am I more likely to get COVID-19 if I have MG or LEMS?
No data currently exist on how COVID-19 affects people with MG, LEMS, or people with other autoimmune diseases on immunosuppressive therapies. However, because most people with MG are on immunosuppressive or immunomodulatory therapies and may also have respiratory muscle weakness, they may be at higher risk of contracting the infection or experiencing severe symptoms of COVID-19. So, like the general population, people with MG/LEMS are encouraged to follow strict CDC precautions with regard to social distancing, practicing good hygiene, and using telemedicine, when available.
Q: Can I continue my current medications for MG/LEMS during the COVID-19 pandemic?
You should continue current treatment and not stop existing medications unless you and your doctor have discussed it and he or she approves. No evidence suggests that pyridostigmine (brand names Mestinon, Mestinon Timespan, Regonol) or 3,4-diaminopyridine (also called amifampridine; brand names Firdapse, Ruzurgi) increases the risk of infection so they should not be discontinued. If you’re taking immunosuppressive medications, you should practice extra-vigilant social distancing and communicate with your doctor via telemedicine visits, if appropriate and available. Your doctor should consider specific risks such as age, other health conditions, and geographic location along with potential for increased MG/LEMS disease symptoms when altering or stopping an existing immunosuppressive therapy.
Q: Is it safe to continue my infusion therapies, intravenous immunoglobulins, or plasma exchange?
If your treatment requires travel to hospitals or infusion centers, you and your doctor need to weigh the risks and benefits of the therapy, based on many factors, including regional incidence of COVID-19 and your particular situation. If necessary, and where possible, consider switching to home infusion. Although no current evidence suggests that intravenous immunoglobulin (IVIG) or therapeutic plasma exchange (PLEX or TPE) increase the risk of catching COVID-19, experts recommend that these therapies be reserved for people with acute symptoms.
Q: Should I continue with routine blood monitoring during this pandemic?
At this time, experts recommend weighing the risks and benefits of routine blood monitoring. Decisions regarding continuing during the pandemic should be made by your doctor on your situation and depending on the incidence of COVID-19 in the region you live in.
Q: Should I consider starting immune therapy during this pandemic?
Before starting a B-cell depleting therapy, such as rituximab (brand names Rituxan, MabThera, Truxima), it is important for you and your doctor to consider the risk of worsening symptoms against the risk of catching the viral infection. It may be better to delay cell-depleting therapies until the peak of the outbreak is over in your area.
Q: I’m currently involved in a clinical trial. Will that continue?
Any decision regarding ongoing need for in-person evaluations and treatments as part of a clinical trial should be based on consideration for your best interest and discussed with and communicated to you by the trial monitors. While currently no scientific evidence exists to suggest that some of the new medications that are being studied may increase the risk of catching COVID-19, experts recommend taking extra precautions to lower the risk.
Q: Should I still get vaccinations during the COVID-19 pandemic?
Talk to your doctor about whether you need a specific vaccine at this time. In general, people with MG/LEMS should avoid getting live forms of vaccines (those using a weakened version of the disease-causing germ) and instead be vaccinated with killed forms of vaccines (those using an inactive version of the disease-carrying germ). Available vaccines can protect against a variety of infections, but to date there is no available vaccine for COVID-19.
Q: I have already contracted COVID-19. How might that change my treatment of MG/LEMS?
Most people who develop COVID-19 have mild symptoms and should continue their usual care for MG/LEMS. Your doctor might need to increase the dose of corticosteroids as he or she would if you had other infections or stress. If your symptoms are severe and require hospitalization, your doctor may consider pausing current strong immunosuppression, especially if you have other bacterial infections or sepsis. Furthermore, immune-depleting agents should not be given under such conditions. Milder immune-suppressive agents such as azathioprine (brand names Azasan, Imuran) and mycophenolate (brand names CellCept, Myfortic) should probably be continued. Be sure to consult your physician before making any changes to your current MG/LEMS treatment plan.
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COVID-19 (Coronavirus) and Neurologic Disease Resource Center
