Now that several vaccines have been authorized for use in the United States and the early supply problems are receding, more people than ever are finally able to protect themselves from COVID-19 by getting vaccinated.
But if you or your loved one is living with ankylosing spondylitis (AS), you may have questions that go beyond those posed by the general public.
We spoke to experts and examined the research to answer the most important questions about the COVID-19 vaccines for people living with AS.
1. Why Is It Important to Get the Vaccine if You Have Ankylosing Spondylitis?
COVID-19 is a more widespread, debilitating, and deadly virus than most of us have seen in our lifetime. It has killed more than half a million Americans and sickened and disabled many more.
Even people whose original bout with the disease was mild may face lingering symptoms, including fatigue, shortness of breath, brain fog, and others.
When the coronavirus first began circulating, questions arose about whether people with rheumatic diseases like AS might be especially hard-hit. The good news is that doesn’t seem to be the case.
“Compared with other rheumatic diseases, patients with AS may not be at high risk of severe COVID-19 among hospitalized patients,” says Abhijeet Danve, MBBS, MD, assistant professor of medicine (rheumatology) at the Yale School of Medicine and director of the Yale Spondyloarthritis Program, in New Haven, Connecticut.
This may be because people who have ankylosing spondylitis are not prescribed the high-dose steroids — a risk factor for poorer outcomes — as are some with other rheumatic conditions like rheumatoid arthritis or lupus.
However, Dr. Danve emphasizes, more needs to be known. “Data about the risk of severe COVID-19 among patients with AS are scanty,” he says.
The majority of studies conducted so far tend to examine people with a variety of rheumatoid diseases. A study by Chinese scientists published in March 2021 in Rheumatology International, for instance, assessed some 2,000 people with an array of rheumatic diseases who contracted COVID-19. Their analysis concludes that the risk of getting infected with the coronavirus (but not of dying) was significantly higher in this group than it is for the general population. But the researchers found that some of the biggest factors for the increased risk is the presence of comorbidities like hypertension (high blood pressure) and lung disease, as well as older age.
One study by German researchers did separate rheumatoid arthritis patients with COVID-19 from those who have AS, psoriatic arthritis, or enteropathic arthritis. Published in the online edition of Clinical and Experimental Rheumatology in March 2021, it found the latter group fared better, with only 16 percent needing to be hospitalized from their bout of COVID-19 compared with 30 percent for RA patients, and only 10 percent requiring oxygen, compared with 18 percent. The researchers point out that they don’t know whether these differences are inherent to the diseases or are due to the various treatments prescribed for them.
2. Are the Vaccines Safe and Effective for People With Ankylosing Spondylitis?
Currently, three vaccines have been granted emergency use authorization for adults by the U.S. Food and Drug Administration (FDA), and many others are being tested worldwide.
Vaccines made by Pfizer-BioNTech and Moderna are what is known as messenger RNA (mRNA) vaccines. These vaccines provide instructions to the cells to manufacture a piece of the coronavirus, which the immune system then responds to. Both of these vaccines require two shots, the second coming three weeks and four weeks after the first immunization, respectively.
The third vaccine, Johnson & Johnson's Janssen vaccine, requires only a single shot. This vaccine uses an inactivated virus as its base.
Onyema Ogbuagu, MBBCh, an infectious disease specialist and a principal investigator of the Pfizer COVID-19 vaccine trial at the Yale School of Medicine, says that people with rheumatic diseases were not excluded from participating in the clinical trials, meaning likely some of the earliest recipients of the vaccines had some of these conditions. By now, of course, many more people with rheumatic conditions have also been vaccinated.
Everyone who was immunized in the clinical trials mounted a strong immune defense against COVID-19, and no serious issues emerged, Dr. Ogbuagu says, which is what led to their authorizations.
“Millions of people in the United States have received COVID-19 vaccines, and these vaccines have undergone the most intensive safety monitoring in U.S. history,” the Centers for Disease Control and Prevention (CDC) concludes on its website.
However, after six women were found to develop a rare type of blood clot after receiving the Janssen vaccine, the CDC and the FDA recommended an immediate pause in its use, and the CDC held an emergency meeting of its Advisory Panel on Immunization Practices on April 14 to review the cases. As of April 20, the panel had not voted on whether and how use of the vaccine should resume.
3. Do I Need to Change My Ankylosing Spondylitis Medications Before Getting the Vaccine?
You do not need to change any AS medicines before getting the COVID-19 vaccine.
A panel of 13 experts known as the North American Task Force of the American College of Rheumatology (ACR) published guidance in Arthritis & Rheumatology in March 2021 about medications for rheumatoid conditions that might need to be shifted at the time of being vaccinated. None of the drugs mentioned in that report — which includes methotrexate, abatacept, rituximab, JAK inhibitors, or cyclophosphamide — are typically prescribed for ankylosing spondylitis.
The panel concluded that it is not necessary to alter regimens for the drugs that generally are prescribed for AS, such as sulfasalazine, TNF inhibitors, or interleukin 17 (IL-17). They do note, though, that evidence is sparse, and as more becomes available, this guidance may change.
Interestingly, there is some preliminary evidence that anti-TNF drugs might offer some COVID-19 protection. According to a survey of nearly 3,000 people with ankylosing spondylitis and other forms of spondyloarthritis published in Annals of the Rheumatic Diseases in November 2020, people taking these drugs were somewhat less likely to develop the disease.
The ACR task force emphasizes that for people with a rheumatoid disease there are “no additional known contraindications to receipt of the COVID-19 vaccine other than known allergies to vaccine components as stipulated by guidance from the CDC.”
If you take anti-inflammatory medicines (NSAIDs), such as naproxen (Aleve, Naprosyn) or others, you can also continue with your regular schedule. Although the CDC does not recommend that people take these medicines before their shot as a way of avoiding side effects, it is fine to take them before getting vaccinated when that is part of a regular drug regimen, the agency advises.
It is ideal for people to have their disease under control when they get the vaccine, but the ACR task force says everyone should be vaccinated when a shot becomes available to them, regardless of current disease state.
4. When Can I Get a Vaccine if I Have Ankylosing Spondylitis?
When the vaccines were first authorized for use in the United States, demand was high and supply was low. That’s why the CDC made detailed recommendations about who should receive priority for vaccinations, starting with healthcare workers and people in long-term care facilities.
The next groups were those whose medical conditions put them at higher risk, such as having heart disease or being immunocompromised, as well as people age 75 and older.
Fortunately, vaccines are now more widely available. In many states, all adults are now or will soon be eligible to get a vaccine.
You should get vaccinated as soon as you are able to, Danve advises. The sooner you are vaccinated, the sooner you will be protected from this serious disease.
Of course, if you have questions or concerns, you should consult your rheumatologist. Shared decision making with between patients and their doctor is always recommended, Danve says.
As of now, only people age 16 and older are able to be vaccinated. But research in kids as young as 12 has been going on for several months, and experts expect that children ages 12 to 15 may be eligible for vaccinations by fall.
5. Where Can I Get a COVID-19 Vaccine Once I Am Able To?
Vaccines are being offered in a variety of places, with more locations becoming available all the time. You may be able to be vaccinated at your local drugstore or supermarket, doctor’s office, hospital, federal FEMA pop-up site, or in a neighborhood community or senior center.
To learn your state’s schedule and where vaccines can be found in your area, check the website of its health department. You can also find information about vaccination sites near you from the CDC.
6. Are COVID-19 Vaccines Free for People With Ankylosing Spondylitis?
The good news is that everyone can get a COVID-19 vaccine at no cost.
In most instances, you will not have to lay out any money when you roll up your sleeve. In other cases, the provider administering the vaccine may charge a fee, but this will be reimbursed by your public or private health insurance or by a government program authorized by the CARES Act.
7. What Side Effects of the Vaccine Should People With Ankylosing Spondylitis Expect?
The Pfizer and Moderna vaccines are two-shot regimens, and you must get them both to receive maximum effectiveness. The Johnson & Johnson–Janssen vaccine requires only one injection.
In general, all these vaccines have minimal and short-lived side effects. Most common are pain and swelling in the arm where the injection occurred; some people also experience fever, chills, joint pain, and headaches. These symptoms are more common after the second shot of the two-shot vaccines.
Rather than being annoyed by these side effects, try to view any discomfort as a sign that your immune system is working and will offer strong future protection against the virus, Ogbuagu suggests.
For people with AS, there is a theoretical risk for a flare or disease worsening following COVID-19 vaccination, but the ACR task force says that the benefits of being protected far outweigh this possibility.
Danve would like to see researchers eventually collect data on disease activity before and after people with AS are vaccinated, to be able to document whether any post-vaccine flares actually occur.
8. What Else Should People With Ankylosing Spondylitis Know About the COVID-19 Vaccines?
Once you are vaccinated, there are many things you will be able to safely do that you cannot do before then.
According to the CDC, people who are vaccinated can travel domestically and perhaps even internationally without taking a test or quarantining and can visit inside the homes of other vaccinated people (or with one household of unvaccinated people not at risk for severe illness) without wearing a mask.
Until more Americans are vaccinated, however, it’s important to continue with other virus prevention tools.
“All AS patients should follow standard precautions, including masks, hand hygiene, and social distancing” when in public, Danve advises.