COVID-19 and lupus
Health information on COVID-19 for people with lupus.
Here, you'll find COVID-19 information and resources that will help you stay both mentally and physically healthy; and steps we've taken over the course of the pandemic to help protect people with lupus.
What people with lupus need to know
People with lupus should take extra precautions to avoid exposure to the virus, since they are vulnerable to viruses and developing other illnesses. Adhering to CDC recommended safety guidelines, which include the use of cloth face coverings, avoid nonessential travel, social distancing, washing your hands often, and cleaning and disinfecting frequently touched areas can limit the spread of the virus.
If you are sick or have been in contact with someone with COVID-19, please follow CDC recommendations for self-quarantine and reporting. We also advise you to consult with your health care team and communicate any and all your symptoms.
If you're unable to see a doctor in person, consider switching to telehealth (telemedicine) for appointments. Telehealth has become a useful and convenient tool to ensure everyone’s safety, particularly those with chronic diseases. If you have an upcoming virtual visit with your doctor, listen to The Expert Series: Telehealth and lupus on how to prepare. For more information on how telehealth works and what options are available to you, please talk with your provider and insurance company.
What You Can Do
Feelings of loneliness and helplessness are common among people with lupus, but there are actions you can take to protect your health, your peace of mind, and your rights. There are a number of healthy, effective ways to manage your stress and anxiety levels so you can maintain a positive outlook.
You can stay in touch with friends, family, and care providers. Let them know your situation and how to help you if you get sick. Be prepared to explain to people what lupus is and why you need to be extra careful. This worksheet can help you organize your thoughts. You can also find support and community through LupusConnect, our online support community.
You can contact us with issues that you're having. Our health educator specialists will help you find the necessary resources and provide you with individualized answers.
Prevention
As mentioned earlier, the best way to prevent a COVID-19 infection is to protect yourself. You can do so by:
- Masking – While in public, wear a mask that properly fits close to your face with minimal gaps.
- Avoid touching your eyes, nose, or mouth to reduce the spread of germs.
- Wash your hands (tops, palms, and fingers) often with hot, soapy water for at least 20 seconds, especially after you have been out in public. Remember that high-touch surfaces can expose you to germs.
- Keep and use alcohol-based gel or wipes, both out in public and at home.
Getting Vaccinated
There are several different COVID-19 vaccines, so you should work with your doctor to figure out which one is right for you.
You can read all of the information and resources about the COVID-19 vaccines, and connect with your doctor.
Our Work for You During the Pandemic
Your health and care are our highest priorities and by following the science closely and consulting with members of LFA’s Medical-Scientific Advisory Council (MSAC), every measure is taken to ensure people affected by lupus receive the care, support, and vital information they need.
Since so much of the work we do is influenced by our constituents’ experiences, in hopes of advancing critical lupus research, funding and education programs; we have listened to your concerns and represented your views. Now more than ever, our engagement and outreach with those living with lupus and their involvement in various advocacy efforts have given us a unique perspective in addressing our community’s immediate health care needs and concerns. Our Health Education Specialists (HES) have served on the front line of COVID-related questions since the beginning of the pandemic. As professionals in nursing and health education, HES continues to stay on top of trends, research information, and recommendations from the Center for Disease Control and the American College of Rheumatology.
They are working across departments to provide general resources and support during this difficult time and have brought constituent concerns to the forefront. HES has advocated for the needs of people with lupus, all while addressing your most pressing questions about medication shortages, social distancing, working during COVID-19, and vaccination recommendations.
To make sure that the lupus community and other immunocompromised groups were considered during the vaccine rollout, we joined forces with the Immune Deficiency Foundation (IDF), The AIDS Institute, Lymphoma Research Foundation and the Autoimmune Association to establish the Protecting the Immunocompromised Collaborative. The Collaborative brought the immunocompromised communities’ concerns and voices to the attention of the Committee on Equitable Allocation of Vaccine for the Coronavirus, the Advisory Committee on Immunization Practices at CDC, and policymakers on the Hill.
Please note that information on the pages below is no longer being updated.
February 2022
- February 22 - Through our work with the Immunocompromised Collaborative we submitted a letter with comments to the offices of Senators Murray and Burr outlining recommendations to the PREVENT Pandemics Act draft language in order to better address the needs of immunocompromised populations. Read the letter (PDF)
November 2021
- November 22 - A new study found that vaccinated people with rheumatic diseases, such as lupus, have better outcomes than those who have not been vaccinated. Read more about this study.
August 2021
- August 30 - Research suggests that people with lupus who suffer from severe respiratory distress caused by COVID-19 are at a greater risk of ICU admissions, mechanical ventilation, or death compared to those without lupus. Read more about this study.
- August 2 - Our page on the COVID-19 vaccines has been updated with new information from the CDC for people who are immunocompromised.
July 2021
- July 30 - The FDA has expanded its Emergency Use Authorization (EUA) for REGEN-COV (casirivimab and imdevimab) as a treatment for people who are at higher risk of severe illness from COVID-19 who have been exposed to COVID-19 or have tested positive for COVID-19 and developed mild to moderate symptoms. Read more at fda.gov.
- July 27 - The first ever large-scale study on the tolerance of the COVID-19 vaccine in people with lupus found that the vaccine is largely well tolerated. Read more about this study.
March 2021
- March 15 - We have two new videos from Dr. Ashira Blazer on COVID-19 and lupus. The first video is a panel presentation on the impact of COVID-19 on people with lupus and an overview of COVID-19 vaccines. In the second video, Dr. Blazer answers questions from people with lupus about the COVID-19 vaccines.
January 2021
- January 12 -Our page on the COVID-19 vaccines has been updated with information about when people with lupus can expect to get the vaccine.
- January 8 - The National Academy for State Health Policy has updated a resource where people can learn more about states’ approaches and updates to their vaccine distribution. Find the information here.
December 2020
- December 30 - Read our blog post with tips for staying safe while celebrating New Year's.
- December 15 - We have updated our COVID-19 vaccines and lupus page with more questions and up-to-date information.
- December 7 - For the holiday season, we wrote a blog post with some simple tips to help you stay safe. Stay safe and stress-free this holiday season.
- December 4 - While there's still much to be known about upcoming COVID-19 vaccines, we put all of the information that we have about a vaccine for the coronavirus and how the information relates to people with lupus. Read and follow our page.
October 2020
- October 23 - Our news on the FDA approval of remdesivir as a treatment for COVID-19, including a special note on this approval for people with lupus.
- October 23 - Recent findings show that people critically ill with COVID-19 and people with lupus share similar immune-response features.
August 2020
- August 28 - The CDC has released some helpful information about choosing and cleaning face masks. Find the information here.
- August 10 - Tips on how you can prepare to go back to school during COVID-19.
July 2020
- June 23 - In a new survey conducted by the Lupus Foundation of America, 55% of respondents taking antimalarials to manage their lupus reported having difficulty accessing their prescription for hydroxychloroquine or chloroquine during March – May 2020 of the coronavirus (COVID-19) pandemic.
- June 15 - The United States Food and Drug Administration (FDA) has revoked their Emergency Use Authorization (EUA) for chloroquine and hydroxychloroquine for the treatment and prevention of COVID-19. Read our statement.
- July 13 - As states begin to move into next phases of reopening, Chair of our Medical-Scientific Advisory Council, Dr. Karen Costenbader, discusses precautions and considerations for people living with lupus.
- July 10 - Pediatric rheumatologist, Dr. Rubenstein, provides information and guidance for parents as states discuss the reopening of schools this fall.
Week of May 10th - 16th, 2020
- May 21 - In an episode of our podcast The Expert Series, Telehealth and Lupus, Dr. Donald Thomas shares information about telehealth and tips to help you prepare for a virtual visit with your doctor. Listen to the episode.
- May 15 - The CDC has released advice for people who are at higher risk of serious illness from the coronavirus because they have compromised immune systems. Some people with lupus may have compromised immune systems because of the medications they take to control their disease.
- May 12 - We've accomplished so much this spring. We put together an overview of our advocacy actions over the last couple of months.
Week of May 3rd - 9th, 2020
- May 4 - Using recommendations from the CDC, we put together a list of what you can do to protect yourself when your state starts lifting restrictions.
Week of April 26th - May 2nd, 2020
- April 27 - The CDC has updated its information on COVID-19 symptoms to include chills, shaking with chills, muscle pain, headaches, sore throat, and a loss of taste or smell. Read more about what to do if you get sick.
- April 26 - Continue to reduce stress and anxiety with 30-minute daily guided meditation sessions with Dr. Neda Gould. When: Monday, Wednesday and Friday at 12 PM and Tuesday and Thursday at 9 AM. Meeting ID: 747-490-420. Zoom link here.
- April 16 - Our podcast The Expert Series covers mental health and wellness during a time of uncertainty. Listen to the episode.
Week of April 19th - 25th, 2020
- April 22 - The National Council on Aging (NCOA) has published an interview with experts including Lupus Foundation of America's president and CEO Stevan W. Gibson, which takes an objective look at the dangers of hydroxychloroquine misuse for older adults, and the shortages of medication as a byproduct of inaccurate information.
- April 20 - Analysis of initial data on lupus and COVID-19 from the Global Rheumatology Alliance is now available. Of the reported cases in the registry, 17% have lupus.
Week of April 12th - 18th, 2020
- April 16: The latest episode of our podcast, The Expert Series, covers mental health and wellness in this time of uncertainty. Listen now.
- April 15: In this video, Dr. Sam Lim, Chief of Rheumatology for Grady Health System in Atlanta, Georgia, provides an update about the COVID-19 pandemic and its impact on people with lupus.
Week of April 5th - April 11th, 2020
- April 9 - Read our new resource: What to do if you have coronavirus symptoms.
- April 9 - Travis Smith, Director of Government Relations for the Lupus Foundation of America, answers questions about supply and access to hydroxchloroquine and choloroqine for people with lupus. Watch the video.
- April 8 - We've identified several new resources for those people having trouble filling their Plaquenil prescriptions. Read the details.
- April 8 - We are proud to support the Global Rheumatology Alliance’s COVID-19 Registry. This important international effort will collect de-identified information from clinicians and people with rheumatic diseases, such as lupus. Read more and access the registry here.
- April 8, 2020 - The FAQ for lupus and the coronavirus has been updated with two questions about finances, and three new health questions. These questions are:
- How might the stimulus package impact me?
- I am afraid the coronavirus may impact my ability to financially support my lupus treatment. What can I do to protect myself?
- I go into a physician’s office to get Benlysta infusions. How do I stay safe while still making sure I get my medication?
- Do NSAIDs, like Ibuprofen, make coronavirus symptoms worse?
- Should I stop taking my ACE-I or ARB medication?
- April 6: The co-chairs of the Congressional Lupus Caucus and the Congressional Arthritis Caucus, joined by 49 other Representatives, submitted a letter to the White House Coronavirus Task Force urging action to ensure people with lupus have access to the drugs they need. More than 10,000 lupus advocates asked their Representative to sign onto the letter.
Week of March 29th - April 4th, 2020
- April 4 - New blog post: there is no evidence that taking hydroxychloroquine (Plaquenil) is effective in preventing a person from contracting the coronavirus (COVID-19). Read more.
- April 3 - We've collected a few of the updates for the past week, which you can read here: Coronavirus Prevention and Underlying Health Conditions Updates
- April 3 - Now you can find out what your state is doing to ensure people with lupus are able to access hydroxychloroquine and chloroquine while they are being investigated for use in treating COVID-19. We're tracking the actions of every state.
- April 1 - Watch the video of a conversation with Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations. He gives a status report on the Foundation's actions to date to ensure a supply of these drugs for people with lupus.
- April 1 - Take action! Ask your Representative to sign onto the letter urging them to ensure access to these drugs for people with lupus and rheumatoid arthritis.It only takes 60 seconds.
- April 1 Five more questions and answers have been added to our Frequently Asked Questions: Coronavirus (COVID-19) and Lupus. These questions are:
- What should I do if I cannot reach my health care provider?
- I have discoid lupus. Am I still at a higher risk for negative outcomes if I am infected with the coronavirus?
- I am anxious that I will not be able to fill my prescription for hydroxychloroquine. Should I cut back on my dosage to make my prescription last longer?
- Is it true that hydroxycloroquine will keep working 45 days after I have stopped taking it?
- Why is the coronavirus more dangerous to people with lupus?
- What should I do if I cannot reach my health care provider?
- April 1 - New resource: Tips on what to do if you have a prescription for hydroxychloroquine or chloroquine and are experiencing difficulties getting your prescription filled.
- March 31 - FDA Recognizes Hydroxychloroquine and Chloroquine Shortages
- March 31 - We have received positive responses from federal and state officials and other key stakeholders, including the manufacturers of hydroxychloroquine and chloroquine, state boards of pharmacy, health plans, pharmacies and pharmacists, and physicians. Read more about the positive responses we've been getting.
- March 30 - The U.S. Food and Drug Administration (FDA) issued an Emergency Use Authorization (EUA) to allow hydroxychloroquine and chloroquine for coronavirus COVID-19 treatment. Read more about what this means for people with lupus.
Week of March 22-28, 2020
- March 28 - Dr. Ashira Blazer, Rheumatologist at New York University's Langone Medical Center joined us for a Facebook Live video to answer all of the most recent questions. Watch the recorded video.
- March 27 - The Lupus Foundation of America in partnership with the Arthritis Foundation are urging state pharmacy boards and other important stakeholders involved with the drug supply chain to take immediate action to ensure the availability of hydroxychloroquine (Plaquenil) and chloroquine (Aralen) for people with lupus and rheumatoid arthritis. Read the letter.
- March 26 - Take action! Right now, as part of our newly-launched campaign to highlight the importance of hydroxychloroquine and chloroquine, #WithoutMyHCQ, we need you to add your voice to the fight and contact your members of Congress in support of the people with lupus who rely on these medications!
- March 24 - Our new resource looks to help you cope with the stress and emotional strain of both the coronavirus itself and being isolated from loved ones. Read more.
- March 24 - Three new frequently-asked questions have been added to the FAQ from our Health Educators on this page.These questions are:
- What should lupus patients do if their pharmacy runs out of HCQ/plaquenil?
- How are my disability benefits affected by coronavirus?
- How do I explain to people that lupus puts me at higher risk for serious complications from the coronavirus?
- March 23 - Read the joint statement by the Lupus Foundation of America, American College of Rheumatology, American Academy of Dermatology, and the Arthritis Foundation urging the White House Coronavirus Taks Force and nation's governors to ensure Hydroxychloroquine access during the COVID-19 crisis
- March 23 2020 - Statement: Lupus Foundation of America Urges Manufacturers of Hydroxychloroquine and Chloroquine to Ensure Supply to Treat Lupus
- March 21 2020 - The Lupus Foundation of America partnered with national patient organizations to submit a letter to the Congressional Leadership and the Administration calling for the implementation of needed patient protections that include ensuring people with lupus continue to have access to hyrdroxychloroquine (HCQ). The Foundation was responsible for adding language about the needs of the lupus community to this letter. We continue to work in partnership with other patient and provider organizations to explore additional ways in which the patient community can work with government and other stakeholders to preserve access to needed care and treatments.
- March 21 - Read our questions and answers regarding Hydroxychloroquine (Plaquenil) and Coronavirus.
- March 20 - Read our statement regarding access to hydroxychloroquine (Plaquenil) for people with lupus.
Some of our chapters have been posting more local information for the people with lupus in their regions. Follow the links below to their coronavirus-related pages, or find your region or chapter.
- Florida
- Georgia
- Heartland (Missouri, Southern Illinois, & Eastern Kansas)
- Indiana
- Ohio
- Philadelphia Tri-State (Delaware, New Jersey and Southern Pennsylvania)
- Texas Gulf Coast
- Texas Lone Star (North, central and west Texas, including Dallas/Fort Worth, San Antonio, Austin, El Paso, Lubbock, and surrounding areas)
- March 15: We have two new videos from Dr. Ashira Blazer on COVID-19 and lupus. The first video is a panel presentation on the impact of COVID-19 on people with lupus and an overview of COVID-19 vaccines. In the second video, Dr. Blazer answers questions from people with lupus about the COVID-19 vaccines.
- December 6 - In a Virtual Town Hall with the Georgia Chapter, Dr. Sam Lim discussed what the COVID-19 vaccine applications means for people living with lupus. Watch now.
- October 26: Dr. Karen Costenbader provides an update on the impact of COVID-19, including how to distinguish between a lupus flare and COVID-19 symptoms, and information on vaccines and the flu shot for people with lupus.
- July 13: Dr. Karen Costenbader, Director of the Lupus Program at Brigham & Women's Hospital in Boston, answers questions about the coronavirus and lupus, and precautions and considerations to take as state's enter different phases of reopening.
- July 10: Dr. Tamar Rubinstein, Assistant Professor of Pediatric Rheumatology, Children’s Hospital at Montefiore answers some common questions about children living with lupus amid the coronavirus – including considerations to take if schools open, when socializing with friends and easing stress.
- April 15: Dr. Sam Lim, Chief of Rheumatology for Grady Health System in Atlanta, Georgia, provides an update about the COVID-19 pandemic and its impact on people with lupus.
- April 9: Travis Smith, Director of Government Relations for the Lupus Foundation of America, updates recent efforts to expand the supply and access to hydroxchloroquine and choloroqine for people with lupus
- April 1: Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations, gives a status report on our actions to date to ensure a supply of hydroxychloroquine for people with lupus.
- March 28: Dr. Ashira Blazer gives an update about the coronavirus and its impact on people with lupus
- March 20: Dr. Ashira Blazer, Assistant Professor of Medicine in the Division of Rheumatology at New York University's Langone Medical Center, provides initial information about the coronavirus and its impact on people with lupus.
Our health educators are available to answer your questions and give you the help you need.