5 Things People With Rheumatoid Arthritis Need to Know About the COVID-19 Vaccines

The good news is that primary immunizations and booster shots for COVID-19 are widely available for everyone 6 months and older in the United States. They’re offered free for all Americans — regardless of immigration or health insurance status — at drugstores, doctors offices, community health centers, and other locations, according to the Centers for Disease Control and Prevention (CDC).

That means that most Americans can get these shots and protect themselves from the most serious complications of this viral disease.

Despite the vaccines' importance in protecting people from hospitalization and death, though, roughly one-fifth of eligible Americans have not gotten a single shot, the CDC notes. If you are still holding back because you have questions, especially if you or a loved one have rheumatoid arthritis (RA), this article should help.

Based on the growing body of research, as well as expert insights, here are five things people with RA should know about the COVID-19 vaccines.

1. It’s Crucial That People With Rheumatoid Arthritis Get the COVID-19 Vaccine and All Recommended Boosters

COVID-19 is a serious disease. It has killed more than a million Americans, per the CDC, and has left others with lingering symptoms known as long COVID, including extreme fatigue, shortness of breath, and brain fog.

Fortunately, having RA or another autoimmune condition in and of itself does not seem to make COVID-19 more deadly, says Lynn Ludmer, MD, a rheumatologist at Mercy Hospital in Baltimore.

But the same cannot be said for people on immune-weakening medicines — which includes many people with RA — or those with cardiovascular disease, a potential complication of RA. Those circumstances do increase the risk of severe COVID-19 outcomes if a person contracts COVID-19, according to the CDC.

That’s why the American College of Rheumatology (ACR) states that all RA patients should be vaccinated. In guidance first released in February 2021 by the ACR’s North American Task Force — composed by 13 experts and updated several times, most recently in August 2022 — the ACR emphasizes that there are no known RA contraindications to the COVID-19 vaccine unless someone is allergic to the vaccine’s components.

The group also recommends that people with RA get an mRNA vaccine, such as those made by Pfizer-BioNTech or Moderna, rather than a non-mRNA shot like Johnson & Johnson’s or Novavax. For autoimmune inflammatory rheumatic disease (AIIRD) patients not yet vaccinated, either of the mRNA vaccines is recommended. There is no recommendation for one mRNA vaccine over another.

The ideal is for people to have their RA well-controlled when they get their vaccines. But the ACR task force says everyone should be vaccinated regardless of their current disease state. The group also emphasizes that their recommendation for the vaccines includes everyone who has previously contracted COVID-19.

If you don’t know where you can get a vaccine, the federal government’s website lets you put in your ZIP code and see options near you.

Even those who are homebound should get the shots. People in this situation should ask their healthcare provider or state or local health department how they can get vaccinated. If they can’t help, the CDC suggests contacting groups that advocate for people at home, such as The Aging Network or the Disability Information and Access Line.

Experts Worry About Vulnerability of People Who Take Some RA Drugs

Reports from the Global Rheumatology Alliance, an international registry of people with RA who develop COVID-19, point to the importance of COVID-19 vaccinations for people who are immunocompromised as a result of their RA medication, because they are at higher risk of poor outcomes from the coronavirus.

Results from the experiences of some 3,700 patients from this registry, published in January 2021 in Annals of the Rheumatic Diseases, revealed that use of more than 10 milligrams (mg) of steroids per day with moderate to high RA disease activity leads to a greater likelihood of adverse outcomes with COVID-19 infection.

Another report from the Global Rheumatology Alliance, published in September 2021 in Annals of the Rheumatic Diseases, based on the COVID-19 disease experience of nearly 3,000 people with RA, showed that people on rituximab (Rituxin) or Janus kinase inhibitors (JAKs) have more severe COVID-19 disease, including hospitalization and in some cases death, than people who took other medications, especially TNF inhibitors.

Taking these vaccines does make a difference for immunocompromised people. A study published online in the Lancet Rheumatology in August 2022 that was funded by the National Institutes of Health examined more than 5000 people taking immunosuppressants. People who had received the COVID-19 vaccines were substantially protected from needing to be hospitalized.

2. 2 Shots Aren’t Enough — You May Need a Third Dose Plus Boosters

In August 2021, the CDC added a new recommendation for people who are “moderately or severely” immunocompromised, including those who take systemic immunocompromising drugs, and have received an mRNA vaccine: They should get a third dose of the vaccine some 28 or more days after the second dose.

Based on this recommendation, the American College of Rheumatology clarified that a three-shot series of the same mRNA vaccine is considered a primary series in people who are immunocompromised, in addition to needing subsequent boosters. Talk to your rheumatologist about whether the drugs you take put you in this category.

You do not need proof or documentation of an immunocompromised status in order to get the third primary vaccine. Simply tell the person making the appointment of your need for this shot.

It’s important to note that this third shot is not a booster (more on those below). The third shot should be the same full strength as the original shots, the CDC says.

The reason for the third shot is that people who are compromised, including from immune-suppressing medications, don’t always mount a sufficiently robust immune response following the two-dose series.

This became clear after a study of people with RA in Israel, a country with an early high rate of vaccinations. The research, published in October 2021 in Annals of the Rheumatic Diseases, found that some 86 percent of people with RA mounted a strong immune response to the vaccines, compared with 100 percent of those without the disease. The study specifically noted that rituximab significantly reduced the immune response, and there was also a moderate decrease in people on abatacept (Orencia), mycophenolate mofetil, and glucocorticoids (at a mean dose of 6.7 ± 6.25 mg/day.)

In a study published in Annals of Internal Medicine in November 2021, researchers from Washington University in St. Louis found an even starker impact of the medications. Compared with a healthy control group, people with autoimmune diseases had a threefold reduction in certain antibodies following their COVID-19 vaccines, an effect especially seen in people on glucocorticoids, the researchers found.

That third shot seems to make a significant difference, especially for patients on Rituxan (rituximab). A study that has not yet been published in a medical journal found that although the immunocompromised patients taking rituximab did not produce sufficient antibodies after their first two mRNA vaccines, they did get a stronger immune response after a third shot.

This recommendation for the additional primary shot is separate from the booster shots recommended for everyone after they have completed their regular series.

Whether or not a person got one or more booster shots previously, the CDC recommends that everyone ages 12 and older get the current, updated booster at least two months after your last vaccine.

This is because the new booster shots by Pfizer and Moderna target the omicron variant that is in wide circulation, in addition to targeting an early strain of the virus as in the original shots. These updated boosters are expected to offer better protection against the germs you are most likely to now encounter.

Children ages 5 to 11 who are not immunocompromised are advised to get an updated Pfizer booster (Moderna is not available for this group) at least five months after completing their two-dose primary series, the CDC says. Children that age who are immunocompromised should get the vaccine at least three months after completing the three-dose primary series. Those under 5 are not yet eligible for a booster.

Adults whose first vaccine was the single-dose J&J shot are encouraged to get a second shot with a more effective mRNA vaccine, followed by an updated mRNA booster two months later.

The Novavax vaccine, which was authorized for people 12 and older, is a two-shot series; there is currently no Novavax booster.

After reviewing the data, the U.S. Food and Drug Administration (FDA) also authorized a mix-and-match approach to boosters (but not primary series vaccines), meaning anyone can get any shot, even if it is different from their original shot. People who received the J&J vaccine are especially found to have a larger antibody rise if they get one of the mRNA vaccines as the booster, the FDA found.

If you recently had COVID-19, the CDC says you “may consider delaying your vaccine by three months from when your symptoms started or, if you had no symptoms, when you received a positive test.”

3. Work With Your Doctor to Shift Your RA Medications

Because of the possibility that certain RA medications will interfere with a person’s ability to manufacture antibodies against COVID-19 after a shot, the ACR task force recommends that patients work with their doctors to consider shifting the timing of some common RA medications when feasible, in an effort to enhance this immune response.

These recommendations are not intended to replace a doctor’s clinical judgment.

Medications include:

• Methotrexate They recommend pausing for one week after each mRNA vaccine dose and two weeks after the Johnson & Johnson vaccine, if the disease is well controlled.
• JAK Inhibitors Pause for one week after each dose, regardless of the patient's state of disease.
• Abatacept (Orencia) For subcutaneous delivery, pause for one week before and one week after the first dose only. For intravenous (IV) delivery, time the first vaccine to occur four weeks after the drug's infusion, then postpone the subsequent infusion by one week, for a five-week gap. For those not yet on subcutaneous or intravenous abatacept, therapy should be delayed until the recommended one week after the first vaccine dose has passed.
• Rituximab (Rituxan) Schedule vaccine about four weeks before next scheduled cycle, and delay the drug two to four weeks after the vaccine series is completed, if possible.
• Cyclophosphamide (Cytoxan) Time drug administration about one week after each vaccine dose, if possible.
• Mycophenolate Pause for one week after each vaccine dose if your disease is stable.
• Acetaminophen and NSAIDs Assuming the disease is stable, withhold for 24 hours prior to vaccination. (There is no restriction on post-vaccination use to treat symptoms.)

There are currently no recommendations to alter drug regimens for hydroxychloroquine, intravenous immunoglobulin (IVIG), prednisone less than 20 mg per day, sulfasalazine, leflunomide, mycophenolate, azathioprine, cyclophosphamide, TNF inhibitors, belimumab, oral calcineurin inhibitors, or IL-6R, IL-1, IL-17, IL-12/23, or IL-23.

4. Don’t Worry About Minor Side Effects

Studies have provided reassurance about side effects of the COVID-19 vaccines for people with RA.

According to a report published in JAMA in February 2022, data from more than 5,000 people in 30 countries with rheumatic disease has indicated minimal problems after getting the shots. (The data was drawn from a voluntary registry collected by the European Alliance of Associations for Rheumatology.)

Some 70 percent of the people in the registry received the Pfizer-BioNTech vaccine, 8 percent got the Moderna vaccine, and the rest received the Oxford-AstraZeneca vaccine, which is not available in the United States.

While many of them experienced muscle pain or fever, which is a common side effect among all people, only 4 percent experienced a flare of their rheumatic disease, with most of the flares being mild or moderate. Just 1.5 percent needed a new medicine or increased dose of their drug to treat the symptoms of the flare. And only 0.5 percent of the vaccine recipients experienced a severe adverse event.

Additionally, some 1,500 people with RA and other rheumatic diseases who had their experiences recorded in Europe’s EULAR COVID-19 Vaccination Registry (COVAX) generally developed short-term side effects similar to those in the general population, according to a report presented at the virtual EULAR conference and published in the Annals of the Rheumatic Diseases in May 2021.

And when British researchers assessed a database with more than 3,000 people with rheumatic diseases, they found no increase in disease flares requiring a corticosteroid prescription after COVID-19 vaccinations, according to a study published in Rheumatology in September 2022.

The CDC emphasized that the COVID-19 vaccines currently authorized are safe and effective, including for people on many medications. “Millions of people in the United States have received COVID-19 vaccines under the most intense safety monitoring in U.S. history,” the agency states, noting that all authorized shots meet the FDA’s rigorous scientific standards for safety and manufacturing quality.

Common side effects for everyone getting a COVID-19 vaccine include pain, redness, and swelling in the arm that was injected, as well as tiredness, muscle pain, headaches, chills, fever, or nausea.

Anyone experiencing these bothersome side effects should speak with their doctor about taking over-the-counter medicine, such as ibuprofen, acetaminophen, antihistamines, or (for those 18 and over) aspirin, the CDC says.

More serious adverse reactions should be reported to your doctor as well as to the federal government’s Vaccine Adverse Event Reporting System (VAERS). Do remember that anyone can report anything to VAERS, so unless someone’s adverse reaction was vetted by scientists, you should not necessarily give credence to social media reports of side effects people have seen on VAERS.

5. Keep Up Other Measures to Protect Yourself

It’s important to remember that people who are immunocompromised are at greater risk of developing severe COVID-19 disease, even if they have been vaccinated.

The CDC website makes this point specifically: “People who have a condition or are taking medications that weaken their immune system may not be protected even if they are up to date on their vaccines.”

That’s why the CDC strongly recommends that people who are immunocompromised from medication should continue to take all other COVID-19 precautions. The ACR guidance emphasizes this as well.

This protection includes properly wearing a well-fitting mask indoors around other people, opening a window or otherwise improving the ventilation inside, staying six or more feet from others, washing your hands often, and taking a COVID-19 test if you develop symptoms or suspect you may have been exposed.

It is especially important to follow these steps when the level of transmission of the coronavirus in your community is rated as being substantial or high.

It’s also helpful to protect your respiratory system from being weakened by other respiratory diseases. That’s why in August the American College of Rheumatology (ACR) released a summary of new vaccination recommendations for flu, pneumococcal pneumonia and other illnesses for people with rheumatic diseases.

This guidance recommends recommends getting multiple vaccines on the same day, so you can get your COVID-19 booster at the same time as these other shots if it’s more convenient.