Updated April 3, 2020

The first priority of the Lupus Research Alliance is the health of our lupus community.  We have been consulting with health care authorities and monitoring the situation created by the spread of COVID-19.

Please note that every lupus patient is different. If you have specific questions about your condition and/or any new symptoms, you should contact your health care provider right away.

Following is a list of Frequently Asked Questions to help answer your concerns:

What is COVID-19?

In December 2019, a new virus called SARS-COV-2 was identified in Wuhan, China. This virus was found to cause a severe respiratory illness in patients which was later named after the type of virus that caused it and the year it was identified (coronavirus disease 2019 or COVID-19).

Should people with lupus be especially concerned about COVID-19?

People with lupus are predisposed (at greater risk) to infections because of their disease as well as the medications they take to manage it. Click here for information from the U.S. Centers for Disease Control and Prevention (CDC), the American College of Rheumatology and other resources.

Are people with lupus immunocompromised?

People with lupus are considered immunocompromised and so could be at greater risk for infections in general because of their underlying disease itself and some of the medications they take to treat lupus.

Are people who are taking immunosuppressive medications more susceptible to infections such as COVID-19?

People taking immunosuppressive medications are considered to be immunocompromised and so could be at greater risk for infections in general. It’s best to consult with your healthcare professional for specific recommendations. You should not stop or alter your medications without consulting with your rheumatologist first. Not all people with lupus take immunosuppressive medications.

Currently, there is no specific data on the virus causing COVID-19 in patients with lupus. Thus, the rate and the severity of the infection in lupus patients is not yet known.

The CDC recommends that people at high risk:

• Stay home and avoid crowds as much as possible to further reduce your risk of being exposed. Also avoid non-essential travel.
• Have supplies on hand, including medications you normally take.
• When going out in public, keep away from others who are sick, limit close contact and wash hands often.

What are the symptoms of COVID-19?

The CDC notes that reported illnesses have ranged from mild symptoms to severe illness and death for confirmed coronavirus disease 2019 (COVID-19) cases. According to the CDC, the following symptoms may appear 2-14 days after exposure.*

• Fever
• Cough
• Shortness of breath

Emergency warning signs that need immediate medical attention include:

• Difficulty breathing or shortness of breath
• Persistent pain or pressure in the chest
• New confusion or inability to arouse
• Bluish lips or face

This list does not include every possible symptom. Please consult your health care provider for any other symptoms that are severe or of concern.

How can people with lupus protect themselves from COVID-19?

For people who are immunocompromised, which would include those with lupus, the CDC recommends:

• Have supplies on hand, including medications your normally take.
• When going out in public, keep away from others who are sick, limit close contact and wash hands often.
• Avoid non-essential travel.

The CDC also recommends that everyone take the following steps to prevent infection:

• Avoid close contact with people who are sick
• Avoid touching eyes, nose and mouth with unwashed hands
• Wash hands often with soap and water for at least 20 seconds
• Use an alcohol-based hand sanitizer when not near soap and water
• Clean and disinfect areas that are often touched
• Follow CDC’s recommendations for using a facemask. The CDC updated its recommendation on April 3 advising that when going outside, people who are well as well as those who are sick should wear a facemask to protect themselves from respiratory diseases, including COVID-19.

What should people with lupus do if they think they have COVID-19?

The CDC and other experts in rheumatic diseases recommend that people call their health care provider If they develop a fever, shortness of breath or a cough.

According to the CDC, anyone who thinks they may have symptoms of COVID-19 should:

• Stay home when sick
• Call their doctor or emergency room in advance of a visit and follow instructions.
• Wear a facemask when you are around other people and before you enter a health care provider’s office
• As much as possible, stay in a specific “sick room” and away from other people in your home. Use a separate bathroom, if available.
• Limit contact with pets & animals like you would people.
• Limit movement in the community
• Limit visitors to caregivers
• Cover coughs and sneezes
• Clean hands often as recommended by the CDC above in Question 6
• Avoid sharing personal household items like dishes, bedding, etc.

Is there guidance for increased feelings of anxiety and depression that COVID-19 might be causing?

• The CDC offers guidance on Mental Health and Coping during COVID-19.
• The World Health Organization(WHO) also offers information on dealing with the stress of COVID-19.

Are there treatments in development for COVID-19?

Yes. A drug commonly used for lupus, hydroxychloroquine (Plaquenil) has been shown in preliminary studies and anecdotally to be effective in treating COVID-19.

Additional treatments being studied include the antibiotic azithromycin in combination with hydroxychloroquine, and another similar anti-malarial drug chloroquine as well as an experimental antiviral called remdesivir. Genentech, a Member of the Roche Group, is launching a Phase III trial to assess its marketed arthritis drug Actemra^® (tocilizumab) as a treatment for adults with severe COVID-19. Regeneron Pharmaceuticals, Inc. and Sanofi have initiated test trials of their arthritis drug Kevzara as a potential treatment for severe symptoms of COVID-19. WuXi Biologics and Vir Biotechnology announce collaboration to develop monoclonal antibodies to treat the disease.

Numerous other approaches are being studied as potential treatments.

Are people with lupus that take Plaquenil protected from developing COVID-19?

Scientists do not yet know whether Plaquenil will be helpful in treating COVID-19.  Scientists are currently running both lab experiments and clinical trials to further investigate how Plaquenil works.

Should I start taking Plaquenil “just in case” it will help protect me?

All patients should follow the guidelines from their health care provider.  It is not recommended to make any changes to their treatment plan without first speaking to their provider.

What should I do if I can’t fill my prescription for Plaquenil?

In consulting with top lupus physicians and reviewing the scientific literature, the LRA wants to reassure people with lupus that not taking Plaquenil or taking a lower dose for a short period of time is concerning but not cause for alarm. Our scientific advisors recommend talking with your physician about the situation and possible alternatives.

Should I change any of my medications?

Speak to your health care provider before making any changes to your current treatment plan.

Click here for more information about COVID-19 from the Lupus Research Alliance.

Resources on COVID-19:

U.S. Centers for Disease Control and Prevention

World Health Organization

American College of Rheumatology

National Institutes of Allergy and Infectious Diseases