Lupus itself and the immune-suppressing medications used to treat it may increase risk for severe COVID-19 infections, says Jeffrey R. Curtis, MD, MPH, professor of rheumatology and immunology at the University of Alabama at Birmingham and chair of the American College of Rheumatology (ACR) COVID-19 Vaccine Clinical Guidance Task Force. So the vaccine could be an important tool in reducing the risk of getting very sick from COVID-19 for the 1.5 million Americans with lupus. But if you or a loved one have the chronic autoimmune condition, you likely still have a lot of questions. Here’s what we know right now. RELATED: What You Need to Know About COVID-19 if You Have Lupus
1. When Will I Be Able to Get the Vaccine if I Have Lupus?
Exactly when people with lupus were able to receive the vaccine varied by state, according to the Lupus Foundation of America. But as of April 19, all adults in the United States are currently eligible to sign up for a vaccine appointment. The Centers for Disease Control and Prevention (CDC) has made national recommendations about who should get the vaccine first, starting with healthcare personnel, residents of long-term care facilities, frontline essential workers, and older adults; and then rolling it out to those with certain medical conditions. While lupus is not currently on the CDC’s list of medical conditions with strong evidence for raising risk for severe COVID-19 infections, the use of medications that weaken the immune system is on the CDC’s secondary list of medical situations that might increase risk. Many lupus medications reduce immune-system activity. In February, the American College of Rheumatology issued its COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases, which states that people with autoimmune inflammatory rheumatoid diseases (a category that includes lupus, rheumatoid arthritis, and other conditions) “should be prioritized for vaccination before the nonprioritized general population of similar age and sex” due to a higher risk for severe COVID.
2. Why Is It Important to Get the Vaccine if You Have Lupus?
“People with lupus should get the vaccine,” says rheumatologist Anca D. Askanase, MD, director of the Columbia University Lupus Center and a member of the Lupus Foundation of America Medical-Scientific Advisory Council. It’s vitally important to protect yourself against COVID-19, Dr. Curtis says. People with autoimmune and inflammatory conditions such as lupus are at a higher risk for severe COVID that requires hospitalization. “Based on this concern, lupus patients should be vaccinated without delay once the vaccine is available to them,” he says. Still, the American College of Rheumatology’s new guidelines say the vaccines are too important for people with lupus to skip, because the benefits far outweigh any risks. “Rheumatologists around the world think the vaccine is safe,” says rheumatologist Kenneth Kalunian, MD, professor at the University of California in San Diego and co-chair of the Lupus Research Alliance–Lupus Therapeutics Lupus Clinical Investigators Network. “There’s no mechanistic reason to doubt that. It’s a question I answer 20 times a day from my patients.” Meanwhile, experts say it’s possible the vaccines will be somewhat less effective in people with lupus (and those with other autoimmune inflammatory rheumatoid diseases) compared with the general public due to the effects of immune-suppressing medications used for these conditions. “This is very possible, and probably even likely,” Curtis says. There are a variety of immunomodulatory drugs, including those taken by lupus patients (such as Cytoxan and rituximab), that may cause the COVID-19 vaccines and other vaccines to be less protective, he explains. “That said, even somewhat diminished protection is better than none. If the vaccine is 90 to 95 percent protective for the general population, and somewhat less effective in lupus patients, we’d all feel that protection with the vaccine for lupus patients is better than if someone is not vaccinated.” RELATED: 8 Biggest COVID Vaccine Myths
4. Is 1 of the 3 Available Vaccines a Better Choice for People With Lupus?
Curtis says people with lupus should get whatever vaccine is readily available. The American College of Rheumatology guidelines do not specify that patients with lupus should prefer one vaccine over the other — or whether one of the two-dose vaccines should be preferred over the one-dose Janssen vaccine. On April 13, the CDC and the U.S. Food and Drug Administration (FDA) recommended a pause in administering the Janssen vaccine in the United States due to six reported cases of a rare type of blood clot out of more than 6.8 million doses given. This action, the agencies announced, was taken “out of an abundance of caution” while they investigated these cases and to ensure that when vaccinations resumed, healthcare providers have the tools they need to recognize and treat these rare adverse events. On April 23, the CDC recommended the pause be lifted and vaccination with the Janssen shot resume. It’s also worth noting that clinical trial data for the vaccines did report a lower efficacy rate (66.3 percent) for the Janssen vaccine, compared with over 90 percent efficacy rates reported for both the Pfizer-BioNTech and Moderna vaccines, according to the CDC. But Curtis says this information shouldn’t necessarily discourage people from getting the Janssen vaccine when it is available. The trials for the Janssen vaccine took place in different countries, at different times, and with a higher degree of more infectious viral variants circulating compared with the other vaccines; so the reported efficacy rate doesn’t actually mean the vaccine is necessarily less effective than the others, Curtis explains. He recommends patients the vaccine that is available as soon as they can. “Some protection is better than none,” Curtis says.
5. Should I Delay Lupus Medications Before Getting the COVID-19 Vaccine?
According to the ACR guidelines, some medications for lupus and other autoimmune inflammatory rheumatoid diseases should be continued when getting the vaccine. These drugs to continue include hydroxychloroquine, lower-dose corticosteroids, and mycophenolate. But for other treatments, including rituximab and intravenous cyclophosphamide (Cytoxan), the ACR recommends doctors carefully time treatments with COVID vaccine injections. For example, doses of some lupus drugs should be given early enough so that there’s a gap of up to several weeks before you receive a COVID-19 vaccine injection. Your doctor should also time some lupus treatments so that there’s a gap of a week or more after your first or second COVID vaccine dose. The exact timing depends on the drug. Talk with your doctor about your lupus treatments and your COVID vaccine ahead of time, and tell your doctor when your vaccine will take place.
6. Should I Get The Vaccine if I’m Having a Lupus Flare?
“The guidance recommends that if the vaccine is available patients with autoimmune and inflammatory diseases (this includes lupus) receive it, even if they are having a flare. There’s no recommendation to delay,” Curtis says. The only circumstance whereby someone with lupus should consider delaying vaccination because of their condition would be for a very ill person in the hospital, likely in the intensive care unit, he adds.
7. Could the Vaccine Increase My Risk for a Lupus Flare-Up?
So far, there’s no evidence vaccines are triggering lupus flares. But experts say there’s a small potential risk. “Some lupus patients — healthcare workers mostly — have gotten the vaccine and there is no information that suggests that they have had any complications other than those seen in the general population who have been vaccinated,” says rheumatologist Eliza Chakravarty, MD, an associate member of the Arthritis and Clinical Immunology Research Program at the Oklahoma Medical Research Foundation in Oklahoma City. “Most of these reactions are seen in all vaccines and relate mostly to the body generating the immune response.” Those reactions are short-term, mild side effects, like a sore arm, feeling achy, tiredness, and a low-grade fever, according to the Lupus Foundation of America. According to the ACR guidelines, “a theoretical risk exists for autoimmune inflammatory rheumatoid disease flare or disease worsening following COVID-19 vaccination.” But the benefits of the vaccine outweigh this risk that at this point, is theoretical. The vaccine is essentially acting on parts of the immune system that could theoretically boost immune activity overall, Dr. Kalunian explains. “Whether or not that means increased disease activity isn’t really known.”
8. What Side Effects of the Vaccines Should People With Lupus Pay Attention To?
People with lupus may experience the same relatively mild side effects often reported by people after receiving the vaccine, such as a headache, chills, a sore arm, achiness, fatigue, or fever. These side effects may be stronger after the second injection of two-shot vaccines, which is also a normal reaction for the general public. It’s a good idea to follow the CDC’s recommendation (for everyone) to stay at the place where you received your shot for 15 to 30 minutes afterward, in case you develop a rare side effect called anaphylaxis. “I don’t think the vigilance of people with lupus needs to be any different than general population,” Kalunian says. If you do have a reaction, however, he suggests getting in touch with your rheumatologist or primary care physician. If you do have normal vaccine-related reactions to your first dose, don’t skip or put off getting your second dose according to the ACR. You need both for protection against coronavirus. And it’s worth noting that those common vaccine side effects — tiredness, a low-grade fever, and generally feeling not well — can easily be mistaken for a lupus flare in the days after you receive an injection of the vaccine, Curtis says. The side effects should fade in a day or so. The Lupus Foundation suggests calling your doctor if they last more than two days or if you feel your reaction to the vaccine is severe.
9. Where Can I Get a COVID-19 Vaccine Once People With Lupus Are Allowed to Get It?
Find convenient options near you by using the CDC’s vaccine locater tool. Call before you go to a vaccine site to make sure you’re eligible, that the vaccine is available, and to see if you need an appointment. You may be able to get vaccinated at your doctor’s office, at a local health clinic or hospital or at a vaccination site set up in your community or nearby. There are also drive-through vaccination centers in some states. Pharmacies including CVS, Walmart, Walgreens, and others were scheduled to start receiving the vaccine in February, too, according to the CDC. RELATED: Vaccine Tracker: Where Can I Get a Vaccination?
10. Are COVID-19 Vaccines Free for People With Lupus?
The COVID-19 vaccine is free for everyone, whether you have private insurance, Medicaid, Medicare, or are uninsured. Providers may charge a fee for administering the shots, but that’s covered by your insurance or by the federal Health Resources and Services Administration’s Provider Relief Fund. “No one can be denied a vaccine if they are unable to pay the vaccine administration fee,” according to the CDC.
11. I Have Allergies. Is the Vaccine Safe for Me?
If you have had an immediate allergic reaction to other vaccines or injected medical treatments in the past, talk to your doctor about whether you should get the COVID-19 vaccine, the CDC advises. Don’t get the vaccine if you’re allergic to polyethylene glycol (PEG), which is in the vaccines, or to a related compound called polysorbate. You should also skip the second dose of the COVID-19 vaccine if you had a severe or nonsevere allergic reaction to your first dose, according to the CDC. Meanwhile, people with other drug allergies or a strong family history of allergic reactions can get the vaccine. Allergies to things like pollen, pet dander, mold, or food do not raise risk for a reaction to the vaccine according to the American Lung Association and the American Academy of Allergy, Asthma, and Immunology.
12. What Should I Discuss With My Doctor Before Receiving the Vaccine if I Have Lupus?
“While the overall safety and efficacy of the vaccines are reassuring, it’s important for individuals with lupus to talk with their healthcare team about the vaccines and their treatment plan, since it can vary from person to person,” Dr. Askanase notes. It’s also a good idea to talk with your doctor about any allergies you have and what to expect after you get the vaccine injections.
