COVID-19 and Rare Neuroimmune Disorders

Updated on March 17th, 2020.

Click here for SRNA’s coronavirus page, which will be updated with all the latest developments.

The information and resources provided here have been developed with members of SRNA’s Medical and Scientific Council. The information and resources provided are meant to be an educational resource and do not constitute medical advice. For specific information about treatments, symptoms you may be experiencing or questions about personal exposure as someone with a rare neuroimmune disorder or as a caregiver, please contact your physician directly.

As the spread of COVID-19 continues across the world, it’s important our community knows and understands the risks associated with this virus in the setting of a rare neuroimmune disorder. Risk factors associated with COVID-19 may vary significantly for each individual diagnosed with a rare neuroimmune disorder. Although many who live with these diagnoses are healthy individuals, there are many with compromised or suppressed immune systems, respiratory concerns, and other factors that make their susceptibility to illness more significant. Each individual and family should know their risks and take appropriate precautions relative to their diagnosis and, if in doubt, consult your treating physician.

Since the situation is rapidly changing, it is essential to check the frequent updates posted on the Centers for Disease Control and Prevention website and the website of your state’s Department of Health. A list of resources is available below.

Symptoms of COVID-19

The most common symptoms are cough, fever, and shortness of breath, starting 2 – 14 days after an exposure (the average is 4 days). Some patients with COVID-19 do not have a fever at the beginning of the illness. It is important to report these symptoms to your local physicians (e.g., your primary care doctor), although these are common symptoms that occur with many types of infections, including other viruses like influenza and some bacterial infections.

General Recommendations from SRNA’s Medical and Scientific Council

Please note these are general recommendations and are not medical advice. The information is provided for general information purposes and should not be relied on as a substitute for professional medical advice, care, treatment or for diagnosis. Do not change your medication or regime without talking to your doctor first.

Recommendations for those with rare neuroimmune disorders do not differ much from guidelines given to the general population, although many individuals in our community may be considered high risk. Anybody with respiratory deficits or weakness in the chest or diaphragm, which can occur after damage to the spinal cord, will be at high risk of complications because of the difficulties generated by the pneumonia, hypoventilation or respiratory distress. Dr. Benjamin Greenberg of the University of Texas Southwestern noted, “It is important for all patients on immunosuppressive regimens to take precautions against being exposed to the circulating Coronavirus. Frequent hand washing, reduced public exposure, and social distancing are all recommended. Stay up to date with NORD and CDC recommendations and discuss specific concerns with your health care providers. If you develop fevers or respiratory symptoms, seek care as dictated by your local providers.”

Long-term treatments for Neuroimmune Disorders and COVID-19

Although there is no evidence or data about how COVID-19 may affect patients on long-term treatments for multiple sclerosis (MS), NMOSD, or MOG-Ab disease, at the present our view is that people with these conditions would not normally need to stop taking a disease-modifying treatment as a result of the threat of the virus. For patients taking medications for MS such as Glatiramer Acetate (Copaxone® and Glatopa®) and beta interferons (Avonex, Plegridy, Rebif or Betaseron), which are not immunosuppressive medications, the risk is theoretically low.

If you are on immunosuppressive medications such as Mycophenolate (Cellcept®), azathioprine (Imuran®), methotrexate or other steroid-sparing medications, please make sure you update the safety laboratory testing (e.g., Complete blood cell count and differential, liver function test and immunoglobulins).

For patients on Tysabri, or B-cell therapies such as Rituximab or Ocrelizumab (Ocrevus®), a similar update of safety blood tests is recommended.

Glatiramer acetate (brand name: Copaxone), teriflunomide (brand name: Aubagio), dimethyl fumarate (brand name: Tecfidera) and beta-interferons (various brand names) are generally likely to be safer than the other DMTs as they are not considered to be generalized immunosuppressive therapies. We likewise recommend that people with MS who are taking natalizumab (Tysabri) continue as normal, noting that we will be closely monitoring the developing situation.

Recommendations from CDC for High Risk Individuals

CDC recommends that patients with high risk, which includes patients with neuroinflammatory diseases:

  • Stock up on supplies including medications. Let your provider know if you need refills.
  • Avoid close contact with people who are sick.
  • Take every day preventative actions: clean hands often and avoid touching your face, nose, eyes, etc.
  • When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.
  • Avoid crowds, especially in poorly ventilated spaces. This would include airplane travel and public transportation. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.

Resources

Please take the time to familiarize yourself with the resources below. Bookmark these links and refer back to them as the situation is continuously developing and quickly changing. Be proactive and cautious, act with knowledge and not out of fear.

Centers for Disease Control and Prevention (CDC)

National Institutes of Health (NIH)

World Health Organization (WHO)

National Organization for Rare Disorders (NORD)

Shepherd Center

Massachusetts General Hospital Department of Neurology  COVID 19 (Coronavirus) Patient Information Bulletin

Center for Disability Rights: Action Steps for Attendant Service Users in Response to Coronavirus Disease 2019 (COVID-19)