COVID-19 FAQS: Juvenile Arthritis

UPDATED 11/15/23

News, scientific understanding and guidelines about COVID-19 are continually evolving.  Some information on this page may have changed since its updated publication date. 

Question: What are the new vaccination guidelines for children with juvenile arthritis (JA)?

Answer: Thinking about COVID-19 vaccination has changed since the height of the pandemic. Instead of a complicated series of vaccines and boosters, the Centers for Disease Control and Prevention (CDC) now says the COVID-19 vaccine will be updated once a year, like the flu shot.  The updated versions will rely on scientists’ best guesses because they are developed before new variants start circulating in the fall. 

The updated 2023-2024 vaccine has been changed from earlier versions to better target current strains. Moderna, Pfizer and Novavax each are producing an updated vaccine. It’s not considered a “booster” because it helps the immune system build resistance to these newer strains. Most adults and children will need a single yearly dose.

The new CDC recommendation for an annual COVID-19 vaccine may apply to children who are moderately to severely immunocompromised, including those with JA who take drugs that suppress the immune system. But it’s more complicated for immunocompromised kids who were never vaccinated or didn’t finish a full course of earlier vaccines. Here are the recommendations for those children by age and vaccination status:

Ages 6 months to four years

• For children who were never vaccinated, three doses of the updated 2023-2024 Moderna vaccine, spaced at least at least four weeks apart or three doses of the updated Pfizer vaccine, with three weeks between the first and second dose and at least eight weeks between the second and third dose.
• For kids who received one dose of the Moderna vaccine, two doses of the updated Moderna vaccine, at least four weeks apart. For kids who received one dose of the Pfizer vaccine, two doses of the updated Pfizer vaccine, allowing three weeks after the last vaccine shot before the first dose and at least eight weeks between the first and second dose.
• For kids who received two doses of the Moderna vaccine, one dose of the updated Moderna vaccine, at least four weeks after the last dose; for those who received two doses of the Pfizer vaccine one dose of the updated Pfizer vaccine, at least 8 weeks after the last dose.
• For kids who received three or more doses of the Moderna or Pfizer vaccine, one dose of the updated vaccine by the same manufacturer at least eight weeks after the last dose.

Ages 5 to 11 years

• For unvaccinated kids, three doses of the updated Moderna vaccine, at least four weeks apart or three doses of the updated Pfizer vaccine, allowing three weeks between the first and second dose and at least four weeks between the second and third dose.
• For kids who received one dose of the Moderna vaccine, two doses of the updated Moderna vaccine, with at least four weeks between doses. For kids who received one dose of the Pfizer, two doses of the updated version, allowing three weeks between the first and second dose and at least four weeks between the second and third dose. 
• For kids who received two doses of the Moderna vaccine, one dose of the updated Moderna vaccine, four weeks after the last dose. For those who received two doses of the Pfizer vaccine, one dose of the updated Pfizer vaccine at least four weeks after the last dose.
• For kids who received three or more doses of the Moderna or Pfizer vaccine, one dose of the updated vaccine by the same manufacturer at least eight weeks after the last dose.

Ages 12 years and up

• For unvaccinated kids, three doses of the updated Moderna vaccine, spaced at least four weeks apart or three doses of the Pfizer vaccine, with three weeks between the first and second dose and four weeks between the second and third dose or two doses of the updated Novavax (non-mRNA) vaccine, three weeks apart.
• For kids who received one dose of the Moderna vaccine, two doses of the updated Moderna vaccine, spaced at least four weeks apart. For kids who received one dose of the Pfizer vaccine, two doses of the updated Pfizer vaccine, three weeks after the first dose and at least four weeks before the second dose. 
• For kids who received three doses of any Moderna, Novavax or Pfizer vaccine, one dose of the updated vaccine by the same manufacturer at least eight weeks after the last dose.

Immunocompromised people often don’t have a strong response to vaccines, so JA patients have the option of getting an extra shot.

Your child’s doctor may also recommend changing the timing of certain medications. Adult studies have shown that taking a one- or two-week break from methotrexate, for example, can make the vaccine more effective without significantly increasing the risk of flares. You and your child’s doctor should work together to decide the best course.

Of note: The rollout of the updated vaccine in September was especially rocky for pediatric patients and their parents. There were distribution issues, leading to serious shortages. And there were billing code errors once the government stopped paying for the shots. Today, shots for children are still in short supply, and Novavax vaccines, which may last longer and have fewer side effects, are even harder to come by. If you have trouble finding a pharmacy or doctor who offers the updated pediatric vaccine, try checking the CDC’s vaccine finder website. It’s not always up to date but may be of some help.

Question: Will the updated COVID-19 vaccine keep my child from getting sick?

Answer: The updated vaccine won’t prevent all cases of COVID-19 and really isn’t intended to. Its aim is to help protect against severe infection, hospitalization and death, especially during the winter months, when infections spike. The vaccine’s effectiveness diminishes over time, so the CDC recommends getting the vaccine in late October, which should offer the best protection from November through January or February, similar to the flu shot. It’s unclear whether the vaccine offers protection against long COVID which, according to one large analysis, may affect nearly one-quarter of children who get the virus. Experts say at a minimum, 300,000 children in the U.S. have long COVID, but whether the vaccine offers some protection isn’t known.

Question: Is the vaccine safe and effective for children?

Answer: Most studies, including one that looked specifically at JA patients, found that the vaccine doesn’t make treatment less effective or make disease symptoms worse for most kids. One very small study found the vaccine triggered flares in three of eight children. On the other hand, it is well known that many different viral infections can lead to inflammatory arthritis and the development of autoantibodies. 

The COVID-19 vaccine can cause side effects, including: 

• Inflammation of the heart muscle (myocarditis). This rare side effect mainly affects teenage boys. Symptoms include chest pain, shortness of breath and a fast heartbeat. According to Yale researchers, vaccine-related myocarditis seems to occur when the immune system responds to the vaccine too aggressively, creating inflammation. Why vaccine-related inflammation affects the heart and not other organs isn’t clear. This type of myocarditis is usually treated with nonsteroidal anti-inflammatory drugs (NSAIDs) and prednisone to bring down the inflammation, and most patients recover fairly quickly. There’s no evidence that kids who have JA are more prone to vaccine-related heart problems. Although myocarditis is more likely to result from COVID-19 infection than from the vaccine, the CDC is investigating how many vaccine-related cases occur and the long-term effects.  
• Local and systemic side effects. These include pain and swelling at the injection site and flu-like symptoms such as muscle aches, chills, fever and nausea. Similar symptoms were common with earlier vaccines, and experts don’t expect more or different side effects with the updated version. 

Question: Are children with JA more likely to get COVID-19 or have severe disease?

Answer: It’s unclear. Some studies of COVID-19 infection in immunocompromised children – most done in the early days of the pandemic – reported that kids with autoimmune and inflammatory diseases didn’t fare worse than their healthy peers. Those studies found that co-existing health conditions, including obesity, and medications, like corticosteroids and rituximab (Rituxan), were mainly responsible for severe infections and poor outcomes in JA patients. A study of 607 JA patients using data from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and other pediatric registries didn’t find an increased risk of severe outcomes or hospitalizations, either.

But a meta-analysis of 30 studies from a number of countries comparing immunosuppressed young people to healthy children did. In the analysis, immunocompromised children were more likely to be hospitalized (46% vs. 16%), admitted to the ICU (12% vs. 2%) need mechanical help breathing (8% vs. 1%) and die (6.5% vs. 0.2%). 

The National Institutes of Health (NIH) also points to research showing that people with a rheumatic disease have a higher risk of severe COVID-19 infection, hospitalization and death. The risk is compounded by medications such as high-dose corticosteroids (more than 20 mg a day) and rituximab (Rituxan), the NIH says.

Other studies also suggest that adults with rheumatic diseases are at higher risk of poor outcomes from COVID-19, but less data is available for children.

Question: If my child gets COVID-19, how would it be treated?

Answer: There is no published clinical trial data on COVID-19 treatment in children, so recommendations are based on adult trials and expert opinion. The Food and Drug Administration (FDA) has approved the anti-viral pill Paxlovid for non-hospitalized children ages 12 to 17 who are at high risk of getting very sick.  It is not approved for children under 12. To be effective, your child must start the drug within five days after they first have symptoms. (Obesity puts kids at greater risk of poor outcomes, especially if they also have a rheumatic disease.)

A less-recommended alternative is the antiviral remdesivir. It’s given in a series of three infusions, which are inconvenient, may be hard for kids to handle, and can cause nausea, vomiting and other side effects.

Hear firsthand accounts of how juvenile arthritis affects lives. Warning: inspiration ahead!