COVID-19 vaccine and lupus
Updated April 11, 2022
We have gathered some of the most common COVID-19 vaccine questions that our health education specialists have received and answered them below. We will update this page as new information becomes available.
The American College of Rheumatology (ACR) and the Centers for Disease Control and Prevention (CDC) recommend that people with lupus who meet the age requirements receive a series of COVID-19 vaccines.
The virus has changed and is now easier to catch and transmit, even for people who are vaccinated, but it is much less likely to get it or have a serious case if you are completely vaccinated. Getting vaccinated is still the best way to prevent serious illness and death from COVID-19.
If you have not gotten the vaccine and boosters, please talk to your health care team about why you should receive it.
Now more than ever it is important to have a health care team that you trust. If you don’t currently have a doctor that treats your lupus, or if you need a new one, we can help.
Which COVID-19 vaccines are recommended for people with lupus?
The ACR currently recommends that people with autoimmune and inflammatory rheumatic disease, which includes people who have lupus, receive the multi-dose mRNA vaccines (Pfizer or Moderna) if they are available over the single dose vaccine (Johnson & Johnson).
The vaccine series includes at least two Pfizer or Moderna vaccines. The ACR and the CDC also recommend that people with lupus who are moderately to severely immunocompromised receive a third dose of an mRNA vaccine at least 28 days after the completion of the first two vaccines.
This means that people who received two shots of the Pfizer or Moderna mRNA vaccine and are immunocompromised should receive a third shot, but that one is not called a booster, it is part of the initial vaccine series recommendation now. All people who received the one dose Johnson & Johnson vaccine should receive a second shot of an mRNA vaccine (either Pfizer or Moderna).
Additionally, the CDC recommends that everyone over the age of 12 receive the initial vaccine series (2 or 3 if you are immunocompromised) and then later receive a booster shot. People who are over 12 and moderately or severely immunocompromised may choose to receive a second booster shot.
For those who received the Pfizer or Moderna mRNA vaccine, the booster shot should be given at least 5 months after the last primary series shot.
For those that received the Johnson & Johnson vaccine the booster should be given at least 2 months after the last primary series shot.
For those who choose to receive a second booster shot, it should be given at least 4 months after the first booster.
If you have lupus and are moderately to severely immunocompromised, that means at this point you may need 5 doses of an mRNA vaccine or 1 dose of the Johnson & Johnson vaccine plus 3 doses of an mRNA vaccine to receive the best possible protection against COVID-19.
Please talk to your healthcare team about how many doses of the vaccines you will need to get the greatest amount of protection.
The Food and Drug Administration (FDA) is continuously reviewing the safety and effectiveness data for all of the COVID-19 vaccines that are available in the U.S. The ACR and the CDC are also continuously reviewing new data and information on how to get the best protection from the vaccines.
When and where can I get the vaccine?
The vaccines are widely available in every state from local health departments, hospitals and clinics, and retail pharmacies. The vaccine is free to everyone even if they don’t have health insurance and regardless of immigration status. Find a convenient place to get the vaccine.
How do the COVID-19 vaccines work?
The Pfizer vaccine and the Moderna vaccine use a new technology that relies on messenger RNA (mRNA) from the virus to teach the body how to protect against COVID-19. These vaccines have now been given to millions of people worldwide.
The Johnson & Johnson vaccine uses a harmless virus (NOT the virus that causes COVID-19) to deliver a type of protein from SARS-CoV-2 (the virus that causes COVID-19) to the immune system that teaches it to recognize and fight COVID-19. The harmless virus used for the vaccine cannot give you COVID-19.
Other vaccines that are under development may use different ways to protect the body from the virus that causes COVID-19. We will know more about how those vaccines work as the companies release more information.
Vaccines are studied in thousands of people before they are given to the general public. It isn’t possible, however, to study each vaccine in every type of person before it is approved. The FDA, the Centers for Disease Control and Prevention (CDC), and the companies that make the vaccines will continue to study their safety and effectiveness even after they are approved.
The following CDC vaccine pages are a great place to learn more about how COVID-19 vaccines are being developed and how they work in the body:
Can I get COVID-19 from the vaccine?
No. It is not possible to get COVID-19 from any of the vaccines that have been approved or are currently being reviewed by the FDA.
Does the vaccine have side effects?
Many people in the clinical trials had some short-term side effects from taking the COVID-19 vaccines. The side effects are usually not serious -- one of the most common is a sore or achy arm. Some people develop low-grade fevers or chills and feel tired. This is because the vaccine is working and causing a response from the immune system.
For many people, the Pfizer vaccine is given in two doses three weeks apart and the Moderna vaccine is given in two doses one month apart. For both vaccines it is more common to have side effects from the second dose than the first. People with lupus need an additional dose plus a booster shot. You must receive all recommended doses to get the full benefits from the vaccine.
Adolescents ages 12 to 15, who are now allowed to receive the Pfizer vaccine, experienced side effects that are consistent with ones reported for participants 16 years old and older.
In most cases these side effects are not dangerous and will go away on their own within a short time. Please call your doctor if these side effects last for more than two days or if you have side effects that are more severe.
The Johnson & Johnson vaccine only requires one dose. People with lupus who received the Johnson & Johnson vaccine should receive an additional dose of an mRNA vaccine AND a booster of an mRNA vaccine.
The CDC and FDA will continue to monitor the safety of all COVID-19 vaccines.
I have been vaccinated. Do I need a booster shot?
Yes. Everyone over 12 should get a booster shot of an mRNA vaccine regardless of which vaccine they received for their first shot. People who are over 12 and moderately or severely immunocompromised may choose to receive a second booster shot. The ACR recommends that people with lupus should also receive an additional dose of an mRNA vaccine.
This means that you may need up to 5 doses of the vaccine to get the best possible protection.
The virus has changed and it is now easier to catch and transmit even for people who are vaccinated. The booster shot is particularly important in reducing the chance that you will catch COVID-19. Receiving a booster shot reduces the chance that you will catch COVID-19. It also reduces the chance that if you do get it you will get seriously ill or die.
Talk to your doctor about the number and timing of COVID-19 vaccine doses that are right for you.
Will my lupus medications affect how the vaccine works?
Some lupus medications affect how the vaccine works. In some cases, particularly for those who take immunosuppressant drugs, your doctor may have special instructions for you so that you can get the greatest possible benefit from the vaccine. Your doctor may also recommend that you continue to wear a mask or social distance as much as possible even after becoming fully vaccinated.
Please check with your doctor about how the vaccine fits into your treatment plan.
What if I know the vaccine won’t be effective for me because of my lupus or my medications or I am allergic to the vaccine? What can I do to protect myself?
Please first check with your doctor because the vaccines may still be useful for you. For some people who cannot stop their strong immunosuppressant medications, the FDA has issued an emergency use authorization for a medicine called Evusheld that can help prevent COVID-19 for up to six months in people who have not been exposed to the virus. The drug is recommended for certain adults and children (who are 12-years-old and weigh at least 88 pounds).
Evusheld is only for people who are moderately to severely immunocompromised due to illness or medications OR have a history of allergic reactions to the ingredients in the COVID-19 vaccines. Evusheld consists of 2 injections and can only be prescribed by a doctor.
Were people with lupus or other autoimmune diseases included in the clinical trials for the COVID-19 vaccines? Are the vaccines safe and effective for people with lupus?
It is unlikely that many people with lupus were included in the clinical trials for the vaccines. There is no evidence, however, that people with lupus should not receive the vaccine.
According to the CDC and recent research, there is no reason to think that taking a vaccine that uses mRNA will result in an inflammatory response (flare) for a person with lupus or other autoimmune disease.
There is strong evidence from the clinical trials that taking the vaccine greatly reduces the chance that a person will get COVID-19, which can be a serious or sometimes fatal illness. There are a number of studies underway on how COVID-19 and the vaccines affect people with lupus.
The American College of Rheumatology COVID-19 Vaccine Clinical Guidance recommends that people with autoimmune and inflammatory rheumatic disease (which includes lupus) get the vaccine unless they have an allergy to an ingredient in the vaccine. We will have more information as more research studies are conducted and analyzed over time. We recommend talking with your health care team about the vaccines and your treatment plan, since it can vary from person to person.
Additionally, please continue to follow our Coronavirus and Lupus page for more updates as information is made available.
Is the COVID-19 vaccine safe for pregnant women?
Yes, it is. The CDC recommends the COVID-19 vaccine for everyone 12 years and older, including those who are pregnant or breastfeeding. People who are pregnant or have recently been pregnant are at higher risk of severe illness from COVID-19 than those who are not or have not recently been pregnant.
If you are pregnant and have lupus, talk with your doctor about getting the COVID-19 vaccine.
If you’re planning to become pregnant, evidence shows that there are no vaccines that lead to issues with fertility in women or men.
Is the COVID-19 vaccine safe for children of all ages?
The Pfizer vaccine is the only one that is authorized for people as young as 5 years old. In early 2022, the FDA authorized booster shots for people 12 and older, and for immunocompromised children 5 through 11 to receive a third primary dose. In 2021, FDA approved the emergency use authorization extension for Pfizer to give the vaccine to children ages from 5 to 15.
The Moderna vaccine is authorized for those 18 and older. The Johnson & Johnson vaccine is also authorized for those 18 and older. It has been noted that women under 50 should be advised of the potential for a very rare but serious side effect from the Johnson & Johnson vaccine called thrombocytopenia syndrome (TTS).
After I have received the vaccine, can I stop wearing a mask and go back to my pre-pandemic activities?
Many places have lifted mask mandates and fewer people are wearing masks in public places.
It’s important to note that we know much more about COVID-19 than we did at the beginning of the pandemic 2 years ago. Most importantly, we now have vaccines and effective treatments that are rigorously tested and widely available. We are currently in a period of transition from high to moderate to low community level COVID-19 transmission. We hope that when communities have reached a low level of COVID-19 it will be sustained over time. For now, however, it is best for people with lupus to remain cautious. Wearing a mask is a proven way to greatly reduce your risk of getting COVID and of giving it to others.
You should talk to your health care team about when it is safe for you to stop wearing a mask or return to attending public events even after you have been fully vaccinated.
Your health care team may advise that you continue to follow these recommendations to protect yourself and your family:
- Stay at home as much as you can. Avoid high-risk activities such as travel, indoor gatherings with people outside of your household, and large gatherings even if they are outdoors.
- When you do go out, wear a mask, avoid crowds, wash your hands often, and sanitize surfaces.
- Stay in touch with your health care team and continue to follow your lupus treatment plan.
- Take care of your mental and emotional health.
If I have already had COVID-19 (the illness), will I need the vaccine?
According to the CDC, early evidence suggests that natural immunity (the immunity that someone gains from having an illness and getting better) may not last very long in the case of COVID-19.
Current recommendations are that you should get the vaccine even if you have already had COVID-19. Please talk to your doctor about when you should get the vaccine if you have already had COVID-19.
What if I have a family history of lupus, could the vaccine trigger the disease for me?
It is not likely that the COVID-19 vaccine could cause lupus and there have not been any reports of that happening. We don’t know exactly what causes lupus, but most scientists believe it is a combination of hormones, genetics, and environmental factors. The vaccine stimulates the immune system, but it does so in a very specific way that does not trigger an autoimmune response.
The CDC and the ACR recommend that people with lupus and other autoimmune conditions get the vaccine, including an additional dose and a booster shot. Studies have also shown that the vaccine generally does not lead to increased disease activity in people with lupus.
Most importantly, and this cannot be stressed enough, please be sure to talk with your health care team about the vaccines and your treatment plan, since it can vary from person to person.
Participate in a Lupus and COVID-19 reseach study
A research team led by Dr Rebecca Sadun (Duke University) is conducting a study into how individuals with lupus feel about the COVID-19 vaccine. Participation involves completing a 10-15 minute online survey about your thoughts on the COVID-19 vaccine and whether you have gotten or plan to get the vaccine. Get further information and access the survey here.
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