The first priority of the Lupus Research Alliance is to safeguard the health of our lupus community, in general and within the context of the COVID-19 global pandemic. We will keep you abreast of the most relevant news and all our efforts on your behalf in our dialogues with decision-makers in the federal, academic, clinical, and pharmaceutical arenas.
Update from the LRA About CDC Recommendations on Third COVID-19 Vaccine for Immunocompromised Patients
August 13, 2021 – 4:45 PM The Centers for Disease Control and Prevention (CDC) Advisory Committee on Immunization Practices...
LRA Response to FDA Authorization of Booster Vaccine for Certain Immunocompromised People
August 13, 2021 As you have probably heard on the news, the U.S. Food and Drug Administration granted late last...
Third Vaccine Shield Against COVID-19 Rolling Out March 1, 2021
March 1, 2021 Americans gained a third weapon against COVID-19 this weekend with the availability of a third vaccine....
New COVID-19 Vaccine Clinical Guidance and Planned Research
Important news for people with lupus as COVID-19 vaccines are on everyone’s minds. The foremost authority in rheumatologic diseases,...
Update from LRA’s President on COVID-19 Vaccines in Lupus
January 14, 2020 Dear Friends, Happy New Year! On behalf of all of us at the Lupus Research Alliance...
Over Half of People with Lupus Would Take COVID-19 Vaccine, Shows LRA Survey
Updated January 4, 2021 New York, NY– December 16, 2020. More than half of people with lupus (54%) are...
Your Opinion Matters to Protect the Health of People with Lupus
October 22, 2020 To take or not to take the COVID-19 vaccine when one is available — that is...
LRA-Supported Researcher Finds Similarity between COVID-19 and Lupus Flares
October 21, 2020 In a recent study published in Nature Immunology, LRA Lupus Insight Prize recipient Dr. Ignacio Sanz and colleagues found that the immune response in patients...
Researchers Make Strides in Predicting COVID-19 Response, New LRA Study Finds
October 15, 2020 Some people respond to COVID-19 by releasing high amounts of immune proteins called cytokines, which form...
New LRA-Funded Study: Lupus Flares are Linked to E-Coli Bacteria Levels
August, 2020 A new study led by Dr. Roberto Caricchio, Dr. Stefania Gallucci and Dr. Cagla Tukel, funded by...
New Study Found Hydroxychloroquine Lowered COVID-19 Deaths
July 6, 2020 A study published in the International Journal of Infectious Diseases by Henry Ford Health System found...
Hydroxycloroquine in COVID-19 Trial Restarted in UK
June 30, 2020 The British Medicines and Healthcare Products Regulatory Agency has approved the restart of a global trial that will explore...
Three Healthcare Organizations Issue Statement on FDA Action to End Emergency Authorization of Medications to Treat COVID-19
June 24, 2020 Joint Statement of the American Medical Association, American Pharmacists Association, and American Society of Health-System Pharmacists...
FDA Revoked Emergency Use Approval of Hydroxychloroquine for COVID-19
June 15, 2020 The U.S. Food and Drug Administration announced June 15 that it revoked approval called emergency use...
New Guidelines from the ACR For Lupus Care During COVID-19 Pandemic
June 9, 2020 The American College of Rheumatology enlisted 14 experts on infectious diseases and immune system illnesses to...
Watch Video of Webcast: Lupus and Cognitive Health
Watch a videotape of our recent webcast: Lupus and Cognitive Health Presented by LRA’s Young Leaders Board People with...
COVID-19 Caused Hydroxychloroquine Issues for Third of Lupus Patients, New LRA Survey Finds
NEW YORK, NY, May 28. More than one third of people with lupus experienced significant issues filling their hydroxychloroquine...
Lupus and COVID-19: What You Need to Know – LIVE WEBCAST May 21 at 6 PM ET
Since the arrival of the novel coronavirus, lupus and the most prescribed drug used to treat it – hydroxychloroquine...
Lupus Research Alliance Thanks FDA for Responsiveness Re Letter Citing Plaquenil Shortages
May 7, 2020 The Lupus Research Alliance held an informative call with the Food and Drug Administration (FDA) in...
Lupus Research Alliance Launches Learn From Lupus Campaign for Lupus Awareness Month
May 1, 2020 In the context of the COVID-19 crisis, one disease has taken center stage as the world...
Lupus Research Alliance Encouraged by Lilly Looking at Potential Lupus Drug for COVID-19
April 23, 2020 The Lupus Research Alliance is pleased to share that Eli Lilly and Company entered into an...
New Data Points Away from Hydroxychloroquine as COVID-19 Treatment
Updated April 23, 2020 The most commonly prescribed treatment for lupus, hydroxychloroquine (best known as Plaquenil) is not effective...
LRA Proudly Shares First Results from the COVID-19 Global Rheumatology Alliance Registry
April 20,2020 The Lupus Research Alliance is proud to share that the COVID-19 Global Rheumatology Alliance, of which the...
Lupus Therapeutics, Affiliate of Lupus Research Alliance, Developing a Study Focused on Lupus Patients and COVID-19
New York, NY, April 7, 2020 – Lupus Therapeutics, the clinical trial affiliate of the Lupus Research Alliance...
What You Should Know
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).
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.
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.
Click here for information from the CDC for people who are at risk.
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.
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.*
- Shortness of breath
- 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.
For people who are immunocompromised, which would include those with lupus, the CDC recommends:
- Stay home and avoid crowds as much as possible to further reduce your risk of being exposed.
- 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.
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.
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.
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.
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.
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.
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.