If you have a form of autoimmune or inflammatory arthritis or take immunosuppressant medication, chances are you’ve had questions about getting a COVID-19 vaccine. Here are some answers from a new resource from the American College of Rheumatology.
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American College of Rheumatology Clinical Guidance of Covid-19 Vaccines
If you have an inflammatory or autoimmune type of arthritis or rheumatic disease — such as rheumatoid arthritis, psoriatic arthritis, axial spondyloarthritis, or lupus — you’ve likely had a number of questions or concerns about getting a COVID-19 vaccine when it becomes available to you. In a February 2021 poll of our COVID-19 Patient Support Program, here were some of the most common:
50% questioned if the vaccine would be less effective because of their medications
33% questioned if they would need to stop/skip their immunosuppressant medications before or after getting the vaccine
45% questioned if the vaccine could cause a disease flare
New guidance from the American College of Rheumatology provides some answers for patients and their providers about these concerns.
An important caveat: There was not a lot of strong evidence to inform this guidance (more on this below), because there’s no direct data yet about how COVID-19 vaccination impacts rheumatic patients.
“This guidance should be a good starting point for a discussion with your doctor. It’s not meant to replace their thoughtfulness or judgment,” says rheumatologist Jeffrey Curtis, MD, MPH, a Professor of Medicine at the University of Alabama at Birmingham who led the task force that created the guidance.
Dr. Curtis and his colleagues looked at studies about other vaccines, such as flu and pneumonia, and applied what is relevant from that research to the COVID-19 vaccine. Dr. Curtis is also a Co-Principal Investigator of ArthitisPower, our patient-centered research registry.
With that in mind, here are some key highlights:
1. People with rheumatic and musculoskeletal disease, including autoimmune and inflammatory disease, SHOULD GET a COVID-19 vaccine
“We want patients to get a COVID-19 vaccine — hard stop,” says Dr. Curtis.
People with autoimmune and inflammatory rheumatic diseases can be at a higher risk for hospitalized COVID-19 and worse outcomes compared to the general population, which is why getting protection from the vaccine is so critical.
A big concern among patients is whether the vaccines are safe for them, given that people with these diseases and who take immunomodulating medications were not included in the vaccine clinical trials. This exclusion is normal for these types of trials (where it must first be determined that a vaccine is safe and effective in a general population) but it means that there is no specific data on this patient population.
The ACR guidance addresses this: “There is no direct evidence about mRNA COVID-19 vaccine safety and efficacy in [rheumatic and musculoskeletal disease patients]. Regardless, there is no reason to expect vaccine harms will trump expected COVID-19 vaccine benefits.”
2. The effectiveness of the COVID-19 vaccine should be lower with immunomodulating medication, but you will still get some protection
Based on what experts know about how patients respond to other kinds of vaccines (such as the flu or shingles vaccine), there’s good reason to think that COVID-19 vaccines will not work as well in people who take medication that affects immune system function.
However, that doesn’t mean that the COVID-19 vaccine doesn’t work — it may just work less well than in people who don’t take these medications. But even a slightly less effective vaccine may still help prevent severe disease that requires hospitalization (or worse).
“Remember that any vaccine usually doesn’t work as well in people who take immunomodulating medication,” says Dr. Curtis. “But even if it doesn’t protect you at the same level as someone your age without your health condition, that does not mean the vaccine is worthless. We want patients to get the vaccine so they have as much protection as possible.”
Think of it this way: If you had a choice between being in a snowstorm wearing a winter coat, hat, gloves, and scarf (fully effective vaccine) versus a just a winter coat (less effective vaccine) versus just a T-shirt (no vaccine), of course you’d prefer having all the winter attire. But having the coat is way better than just the T-shirt.
3. There are no contraindications for the COVID-19 vaccine specifically for patients with autoimmune or inflammatory rheumatic disease
The ACR guidance says, “beyond known allergies to vaccine components, there are no known additional contraindications to COVID-19 vaccination.” This means that simply having an autoimmune or inflammatory rheumatic disease — or taking immunomodulating medication to treat it — is not a reason to not get a COVID-19 vaccine.
While vaccination should ideally occur in autoimmune and inflammatory patients with well-controlled disease, COVID-19 vaccination should occur as soon as possible, regardless of disease severity, except in people with life-threatening illness.
In other words, most people who are having disease flares or other symptoms that are not life-threatening should likely still be vaccinated, per your doctor’s advice.
4. There is a theoretical risk of a disease flare after getting a COVID-19 vaccine, but consider the big picture
The ACR guidance reminds us that, given the seriousness of a COVID-19 infection, the benefit of vaccination far outweighs the potential risk for a disease flare or worsening. And there’s not yet data to suggest whether or not patients are having flares after getting the vaccine.
It’s important to also remember that getting infected with COVID-19 can also cause disease flares — not to mention countless other health problems, including life-threatening ones.
Changes to Medication Timing Around the COVID-19 Vaccine
One big area of concern is whether patients should stop taking certain medications before or after getting the COVID-19 vaccine in order to help the body mount a stronger immune response. While there’s no data on this from COVID-19 vaccines directly, these recommendations are based on indirect evidence from what is known from other kinds of vaccines and how the immune system works generally.
Your doctor may have a different recommendation for your situation.
Also, keep in mind that different medications work in different ways, so just because it’s suggested that one medication be temporarily paused after getting the COVID-19 vaccine — say, methotrexate — doesn’t mean that your biologic should necessarily be stopped too.
No Change in Medication Timing for:
In the case of many immunomodulating medications for rheumatic diseases, the guidance suggests that patients do not stop taking medications before or after getting the vaccine. This is because there is no reason to think, based on available data, that stopping these medications would increase your body’s immune system response to the vaccine. This applies to:
Hydroxychloroquine (Plaquenil)
IVIG
Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg)
Sulfasalazine (Azulfidine)
Leflunomide (Arava)
Mycophenolate (CellCept)
Azathioprine (Imuran)
Cyclophosphamide (Cytoxan) (oral)
TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria)
IL-6 biologics (ex: Actemra, Kevzara)
IL-1 biologics (ex: Kineret, Ilaris)
IL-17 biologics (ex: Cosentyx, Taltz)
IL-23 biologics (ex: Skyrizi, Tremfya)
IL-12/23 biologics (ex: Stelara)
Belimumab (Benlysta)
Oral calcineurin inhibitors (ex: cyclosporine or tacrolimus)
There were differing views about high-dose steroids (daily doses ≥ 20 mg.) Some doctors agree that no changes in medication timing are needed, while others may recommend that patients taper steroids to a lower dose before receiving a COVID-19 vaccine. This would be done to make sure the vaccine protects you as much as possible.
Consider Changes in Medication Timing for:
The guidance highlights a few types of medications where there was moderate consensus among the task force about temporarily skipping doses before or after receiving vaccine OR trying to time when you get the vaccine so it occurs at a certain point during the course of your treatment.
This means some evidence suggests this may be helpful at increasing the body’s immune response, but it’s not a hard-and-fast rule. Your doctor may have a different recommendation based on your personal situation, especially when there may be challenges with timing and scheduling your COVID-19 vaccine.
Methotrexate: Skip for 1 week after each vaccine dose
The guidance recommends that patients with well-controlled disease can skip methotrexate for one week after getting each dose of the COVID-19 vaccine. If your disease is not well-controlled — and skipping MTX is likely to make you prone to flare — your doctor may advise against this.
Methotrexate is typically taken orally or injected once a week for rheumatic diseases.
Past research has shown that rheumatoid arthritis patients who stopped taking methotrexate temporarily after getting the flu vaccine had a better response without a big increase in disease flares (though some patients did experience more flares).
JAK inhibitors (ex: Xeljanz, Olumiant, Rinvoq): Skip for 1 week after each vaccine dose
The guidance recommends that patients stop taking these medications, which are oral pills taken daily, for one week after each COVID-19 vaccine dose.
JAK inhibitors work in part by reducing the activity of immune system proteins called interferon, which play an important role in how your immune system responds to invading viruses.
“Interferon is kind of like the captain of the immune system army signaling all the troops and telling them when and where to deploy. When you reduce interferon, you can throw your immune system’s response into chaos,” says Dr. Curtis. The thinking is that holding JAKs after getting the COVID-19 vaccine may improve how your body is able to recognize and fight viral infections like the coronavirus.
Abatacept (Orencia), injectable form: Skip one week before and after the first vaccine dose only
The injectable form of this medication is taken weekly. This applies only to the first vaccine dose.
Abatacept affects the function of T cells, which Dr. Curtis describes as the immune system’s matchmaker — they ensure all the different components are communicating and working together. Since the coronavirus is brand-new (or novel) and most of our immune systems have never encountered it before, it may be important to not affect the work of T cells right before or after getting the vaccine.
Abatacept (Orencia), IV form: Get COVID-19 vaccine 4 weeks after your last infusion, then skip a week and get next infusion
For the IV form, which is typically given every four weeks, the guidance suggests timing when you get the COVID-19 vaccine so it’s four weeks after your last infusion (as in, right before you’re due for your next one), then getting the vaccine, then waiting a week to get the next infusion. The schedule would look like this:
Get abatacept infusion
4 weeks later: Get COVID-19 vaccine
1 week later: Get next abatacept infusion
Rituximab (Rituxan): Get COVID-19 vaccine approximately 4 weeks before next infusion, then delay next infusion by 2-4 weeks after second vaccine dose — if possible
This biologic, used to treat rheumatoid arthritis, lupus, and vasculitis, is an infusion typically administered every six months. It gets rid of B cells circulating in your blood and in your tissues, which helps reduce inflammation. However, these B cells are needed to generate an effective immune system response to vaccines. Getting the COVID-19 vaccine close to your next rituximab dose — when your levels of B cells would be higher — may allow your body to mount a better response to the vaccine. The schedule would look like this:
Get rituximab infusion
Wait 4 weeks before next dose (about 5 months later) and get COVID-19 vaccine
3-4 weeks later: Get second COVID-19 vaccine (depending on Moderna or Pfizer)
2-4 weeks later: Get next rituximab infusion
This kind of schedule is recommended for patients whose disease activity will allow them to be off medication for an extended period, so it may not be advised for all patients.
Read more here about rituximab and the COVID-19 vaccine.
Cyclophosphamide infusion: Time administration so it’s one week after each COVID-19 vaccine dose
Other Recommendations for Before and After Getting a COVID-19 Vaccine
The guidance also includes these additional pointers to keep in mind for before and after getting the vaccine:
There’s no preference for one vaccine over another, based on the data on mRNA vaccines available in the U.S. Get whichever one is available to you.
If you have a non-serious side effect to the first dose of a COVID-19 vaccine, you should still get a second dose. Serious side effects include a severe (anaphylactic) allergic reaction. Non-serious side effects include symptoms like pain and swelling at the injection site, fever, chills, fatigue, and headache. They should go away within a few days.
Doctors should not be ordering lab tests to check for levels of antibodies either before or after you get a COVID-19 vaccine (unless, say, you are part of a clinical trial studying this).
After you get vaccinated, continue to follow all the same public health rules (such as wearing a mask, social distancing, washing your hands, avoiding gatherings and crows). In other words, you shouldn’t change your prevention behaviors just because you got vaccinated.
People in your household and close contacts should get vaccinated when it’s their turn to create a “cocooning” effect, which may help keep you even safer.
How the Guidance Was Created
The guidance was developed by a task force of nine rheumatologists, two infectious disease specialists, and two public health experts who currently or previously worked at the U.S. Centers for Disease Control and Prevention (CDC). The group met several times in December 2020 and January 2021 to undergo a process of reviewing available evidence and building consensus in order to issue recommendations that have either a “strong” or “moderate” level of agreement.
However, the guidance acknowledges that there’s a lot of variability among patients because of differences in underlying health conditions, disease severity, medications, and co-occurring medical issues, which makes it critical to individualize decisions.
Note that the guidance is:
Based on current knowledge and will be updated as more information comes out.
Developed without the availability of a lot of high-quality data, and thus, is not meant to replace your own doctor’s advice for your personal situation.
Meant to be individualized for patients and used as part of shared decision-making with your own doctor.
In other words, the guidance provides considerations to help doctors and patients make decisions about the COVID-19 vaccine — and potential modifications to medications — but there’s not enough data to consider these recommendations gospel.
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