COVID-19 FAQS: Juvenile Arthritis

UPDATED 8/23/21

News, scientific understanding and guidelines about COVID-19 are continually evolving. As such, please note that some information on this page may have changed since its original publication date.

Question: Are the COVID-19 vaccines safe for children with JA?

A: So far, the FDA has only issued emergency use authorization (EUA) to the Pfizer-BioNtech vaccine for children 12 years and older. Vaccines from Moderna and Johnson & Johnson are only authorized for adults 18 years and older but are expected to be given EUA for children soon.

Experts say that the data suggests the Pfizer vaccine is safe and effective for children in this age group, despite recent reports of rare side effects that cause inflammation of the heart (myocarditis) and inflammation of the tissue around the heart (pericarditis). About 1200 cases of cardiac inflammation have been reported following vaccination with one of the mRNA vaccines (Pfizer and Moderna), 500 of which affected people under the age of 30. Adolescent and teenage males over the age of 16 cases seem to be most at risk, and most cases occurred after the second dose. Most cases were mild, with symptoms like fatigue, chest pain and abnormal heart rhythm that cleared up on their own.

While this side effect may worry parents, getting COVID-19 is far riskier than any potential side effects of getting the vaccine, says Randy Cron, MD, PhD, pediatric rheumatologist and Professor of Pediatrics and Medicine at the University of Alabama- Birmingham.

And the side effect is exceedingly rare. CDC researchers estimate that out of a million second doses given to boys ages 12 to 17, vaccines might cause a maximum of 70 myocarditis cases. In comparison, a million doses would prevent 5,700 infections, 215 hospitalizations and two deaths as a result of COVID-19.

COVID-19 infections can also cause serious heart problems. The risk is of heart complications from COVID-19, particularly related to MIS-C, a multisystem inflammatory complication seen in children, is significantly greater than the vaccine risk, says Monica Friedman, DO, Chief of Pediatric Rheumatology at Arnold Palmer Hospital for Children in Orlando. MIS-C caused by a COVID-19 can also lead to developing cardiac dysfunction and coronary artery aneurysms, which is another reason why vaccines are so important, she says.

There’s also no data to suggest that children with juvenile arthritis would be more likely to have cardiac side effects from vaccine, says David Cennimo, MD, professor of pediatric infectious disease at Rutgers New Jersey Medical School.

As such, the CDC continues to strongly recommend vaccination for everyone ages 12 and older.

It’s important to note that children taking rituximab or daily glucocorticoids may not produce as strong of an immune response to the vaccine, therefore developing less protection against the virus.

Before getting your child vaccinated, discuss your child’s medications with his or her doctor. Your child’s doctor may decide to delay the timing of certain medications to enhance immune response to the vaccine.

Question: What are some things I can ask of my child’s school to keep her safe?

A:  In July, the CDC updated its guidance for safely reopening schools, but there is one huge difference from last’s year’s guidance: Schools who can’t follow all the recommendations are still encouraged to return to in-person instruction anyway.

Educational rights plans, such as 504 plans and Individualized Education Plans (IEP), ensure that children with disabilities, including JA, have access to a fair and equal education. As such, parents can request reasonable accommodations for their child, which in the context of the pandemic, are those outlined in the CDC’s recommendations and beyond. These include, but are not limited to: Inquiring about the vaccination status of your child’s teachers, requesting physical distancing policies (3 ft or more), access to continued remote/virtual learning, installing enhanced ventilation systems in schools and classes, and lobbying for a more stringent hand-washing policy, says Heidi Goldsmith, ESQ, special education rights attorney and founder of Bradley-Goldsmith Law.

Children with JA are also entitled to the same quality supports and services as if they were attending in person, which means parents can request that a vaccinated teacher come to the house, says Goldsmith.

Universal masking can also be requested, but due to political reasons, it may be more challenging to obtain. If your child’s school district prohibits mask mandates, you may request that your child be placed in another school, private or public, that has a universal masking policy, says Goldsmith. 

The best way to make a case for your child is to obtain a letter from a doctor, outlining your child’s conditions and exactly why they are requesting those accommodations, says Goldsmith. Also, start early and be persistent. If you don’t hear back from your child’s school administrator within 48 hours, keep calling and emailing to set up a meeting, she says.

And if your child’s accommodations are denied, be prepared to dispute.  

Get more tips from Goldsmith about securing reasonable accommodations for your chil by listening to Back to School During COVID: Part 2 podcast or viewing the educational rights webinar here.

Question: My family is fully vaccinated, but my child with JA is not. Do we still have to wear masks in public? And do our vaccinated family friends need to wear masks around our unvaccinated child?

A: COVID-19 vaccines are shown to be incredibly effective at preventing severe disease, hospitalizations and death in the general population. However, vaccines do not eliminate the possibility of spreading asymptomatic disease. With the newer, more contagious delta variant of the virus on the rise, the rates of asymptomatic infections among vaccinated people could also increase. Additionally, the CDC recently revised its guidelines to say that even fully vaccinated individuals should wear a mask again in public indoor settings where the virus is surging.

For this reason, Dr. Gregory Poland, director of Mayo Clinic's Vaccine Research Group, suggests that vaccinated families of unvaccinated children continue to mask up in public, and exercise caution during extended family gatherings, even if all invited parties have been vaccinated.

Dr. Nipunie Rajapakse, a Mayo Clinic pediatric infectious disease specialist, agrees, saying she would be “extremely cautious” when it comes to children who are at an increased risk of developing more severe disease from COVID, including those who are on immunosuppressive medications. She advises against maskless, indoor gatherings, even where all parties are vaccinated, and against mixing unvaccinated children from different households. 

Both experts said that they would personally take the safe route by making any large group gatherings outdoors, even in circumstances where all adults have been vaccinated.

Talk to your child’s doctor about how to best protect your child, including which safety measures to keep in place, even if your family is fully vaccinated. And if your child is 12 or older, talk to your child’s doctor about vaccination.

Question: Is my child with juvenile idiopathic arthritis (JIA) considered "high-risk" for COVID-19 infection or complication?

A: It’s unclear. Every child is unique, and factors such as disease type, disease activity, degree of immunosuppression and organ involvement will affect the risk.

The good news is that current data suggests that children with rheumatic diseases, including those taking immunosuppressant medications, do not appear to be at a higher risk for infection or complications than other children. However, children under a year old tend to have a higher risk of complications, though this risk is still much lower than in adult populations.  

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has developed a registry to keep tabs of COVID-19 infections in pediatric rheumatic patients. This data will help health care providers learn more about the effects of the novel coronavirus on children with rheumatic disease. Learn more about the registry here and how to get involved here.  

Question: What are the symptoms of COVID-19 in children?

A: Luckily, most children with COVID-19 will either have no symptoms or only have mild symptoms, including low-grade fever cough, sore throat, sneezing, runny nose and fatigue. Others may experience more moderate symptoms including muscle aches, diarrhea, vomiting and fatigue. Some may lose their sense of smell and taste. While these symptoms may be uncomfortable, they are not necessarily signs of severe disease. Call your child’s doctor if you notice any of these symptoms. If symptoms are mild and don’t worsen, your child’s doctor will likely advise you to monitor your child’s symptoms at home, making sure your child stays well hydrated and using a fever reducer, such as acetaminophen, as needed.

On the other hand, if you notice signs of severe infection, such as such as rapid and labored breathing and/or a bluish discoloration of the lips, seek medical care as soon as possible.

Question: How can I best protect my child?

A:  Teaching your child the importance of physical distancing combined with mask wearing and good hand hygiene is key to protecting your child. Moreover, infection risk is much higher indoors, so do your best to limit how much time your child spends in shared indoor spaces.

Remember, protecting your child is a family affair. Make sure that everyone in your household understands the importance of taking measures to lessen infection risk, including avoiding large groups, and gets vaccinated as soon as they are able.

If you are unable to work from home or must venture out often, be sure to give others lots of space and wear a mask. You may also be eligible for benefits, including extended medical family leave and unemployment benefits, under the Families First Coronavirus Response Act (FFCRA) or the Coronavirus Aid, Relief and Economic Security Act (CARES). For more information, click here. 

If you or someone else in your household gets infected, isolate for least 14 days. Stick to one room in the house and have others use a separate bathroom, if possible. Do not handle or touch shared objects without disinfecting them afterwards. Make sure everyone is wearing a mask when in the same room. Everyone in the household should wash their hands thoroughly and frequently. For more guidance on what to do if you or a family member is sick, check out these CDC guidelines. 

Lastly, keeping your child’s disease well-controlled is critical to reducing your child’s infection risk and keeping him or her healthy during the pandemic. Continue to administer your child’s medications as prescribed and do your best to ensure your child keeps up with healthy behaviors, like getting regular exercise, getting plenty of rest and eating a balanced diet.

Question: Should my child stop taking immunosuppressive medication?

A: The short answer is no. Stopping medication puts your child at a higher risk for disease flares, worsening symptoms and developing joint damage. This applies to all medications, including nonsteroidal anti-inflammatories, or NSAIDs, such as ibuprofen and naproxen.  

Current data shows that children on immunosuppressive medications do not have a higher risk of infection or complications, regardless of which disease-modifying medication they take.

However, certain medications may need to be temporarily stopped if your child has a confirmed infection, has been exposed to someone with a COVID-19 infection or is experiencing common COVID-19 symptoms such as fever, dry cough and shortness of breath. But never stop or change your child’s medication dosage without calling consulting a doctor. This is especially important with corticosteroids, which should never be stopped suddenly. For more information about medication safety for your child during COVID-19, check out the these guidelines from the American College of Rheumatology.

If your child has symptoms of COVID-19 or has been exposed to the virus, contact your child’s doctor immediately. He or she will help you decide the best course of action.

Question: Should my child take an antibody test to check for immunity to COVID-19?

A: Antibodies are proteins that result from the immune system’s fight against a virus. In general, they protect people from getting re-infected with the same virus. But with the novel coronavirus, researchers are unsure whether the presence of antibodies gives someone immunity in the future, and if so, for how long. Currently, the CDC says it’s too early to tell if the presence of antibodies can be used to assess immunity.

Several factors can also affect the accuracy of antibody tests, namely, it can take anywhere from one to weeks for someone to develop antibodies after a COVID-19 infection.

Additionally, many antibody tests have not been evaluated for reliability or authorized for emergency use by the FDA. For more information about the performance of various antibody tests, including those authorized for emergency use, click here.

At this point, a lot more research is needed to determine if these tests are useful to individual patients. As knowledge increases over time, tests will likely improve. If you’re interested in antibody tests for your child, talk to your child’s doctor about the value of testing and choosing a quality test.

Question: Can my child take remdesivir in case of COVID-19 illness?

Doctors may decide to treat children who are hospitalized with severe disease with various drugs, including the investigational anti-viral drug, remedisivir. In May, the Food and Drug Administration issued an emergency use authorization so that remdesivir could be used in adults and children hospitalized with severe disease. But this does not mean the drug has been proven effective for everyone.

Little is known about how remdesivir affects children with autoimmune or inflammatory arthritis. The decision to use this drug in children with severe disease will come after careful consideration from the child’s care team. In general, patients who have poor liver or kidney function are not considered good candidates unless the potential benefits of using the drug outweigh potential risks.

Question: There is a new severe childhood illness related to COVID-19 that looks like Kawasaki disease. What do experts know?

A: Pediatric rheumatologists and adult rheumatologists are being asked to consult on a mysterious new illness thought to be related to COVID-19. The new illness, called multi-system inflammatory syndrome, or MIS-C for short, and leads to a potentially dangerous state of extreme inflammation. It mostly affects children and teens and looks like Kawasaki disease, an arthritis-related rheumatic disease that occurs mostly in children.

The illness almost always presents with a high fever for several days. Other symptoms may include skin rash, red eyes, redness or swelling of the hands and feet, pain the stomach, confusion, bluish lips and difficult staying awake. If you notice any of this symptoms in your child, seek emergency care immediately.

Though serious, it’s worth noting that this complication is still very rare. Most children who get COVID-19 will recover without experiencing serious adverse effects. For more information about MIS-C and what to look for, click here.