6 Things That Don’t Need to Be ‘Perfect’ for Immunocompromised Patients to Benefit from the COVID-19 Vaccine

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You know the old saying: Perfection has a way of getting in the way of progress. Due to the intensive worldwide attention on the COVID-19 vaccine, you may be feeling overwhelmed with the many things to keep in mind about getting vaccinated. Will your immunosuppressant medication decrease the vaccine’s effectiveness? Might the vaccine theoretically affect your risk for an autoimmune disease flare-up? What if you don’t feel great when you have the opportunity to book an appointment? Should you be worried that people on immunosuppressant medications were not included in the vaccine clinical trials?

However, rheumatology, autoimmune, and infectious disease experts say the most important thing is this: The COVID-19 vaccine can protect you and your loved ones from severe illness or even death. If it’s available to you and your doctor approves you receiving it, you should get the vaccine.

In an ideal world, we’d have all the data necessary to help immunocompromised patients make decisions but delaying getting vaccine may be the greatest risk of all.

“Not every scenario will be perfect, but having some protective defense against this virus, especially as new variants come out, is better than nothing for most patients,” says rheumatologist Magdalena Cadet, MD, Associate Attending Physician at NYU Langone Health in New York City.

“Even if people are immunocompromised, either because of an underlying health condition or because of their therapy, people who can get immunized should strongly consider getting vaccinated,” says David Aronoff, MD, Director of the Division of Infectious Diseases at Vanderbilt University School of Medicine in Nashville, Tennessee. “A little immune defense against this virus could be the difference between being hospitalized or not, or living or dying, and we need to stack as many cards in our favor as we possibly can.”

Here are six things that don’t need to be “perfect” in order for you to get the COVID-19 vaccine if it’s approved by your doctor.

1. Just because people on immunosuppressant medication were not in vaccine clinical trials does not mean the vaccine is not safe or effective

It is common to exclude people with certain health conditions, including pregnant or breastfeeding women and those on immunosuppressant medications, from the vaccine clinical trials that the U.S. Food and Drug Administration (FDA) uses to authorize and approve vaccines.

The goal of these studies is to make sure the vaccine is safe and effective in a large group of healthy adults. Other populations are typically studied in phase 4 (post-marketing) studies that occur after the vaccine has been approved and more is known about their safety and effectiveness.

But even though autoimmune or inflammatory disease patients on immunosuppressant medications were not in these trials, doctors and public health experts feel confident that the current COVID-19 vaccines are safe for immunosuppressed patients because of how they work. They are not live vaccines, which means they cannot make you sick with COVID-19.

In guidance about the COVID-19 vaccine for patients with rheumatic and musculoskeletal diseases, the American College of Rheumatology says: “There is no direct evidence about mRNA COVID-19 vaccine safety and efficacy in [rheumatic disease] patients. Regardless, there is no reason to expect vaccine harms will trump expected COVID-19 vaccine benefits.”

2. Your disease activity doesn’t need to be ‘perfectly’ under control

The American College of Rheumatology guidance also says that while you would ideally get your vaccine in the setting of well-controlled autoimmune inflammatory rheumatic disease (AIIRD), you should still get the vaccine as soon as possible if it’s recommended for you, regardless of disease activity and severity.

“If someone is having a mild flare, there shouldn’t be hesitancy to get the vaccine,” says Dr. Cadet.

The exception may be patients with life-threatening illness (like those in the intensive care unit for any reason), or patients whose doctors recommend they delay getting the vaccine.

“In my opinion, if someone has lupus or another autoimmune disease with a moderate to severe flare, then they may want to speak with their rheumatologist about postponing it, at least for their first dose,” says Dr. Cadet. “Some patients with rheumatoid arthritis or lupus may get fever with their flares, so it’s something you have to think about in terms of being able to distinguish flares from infections or vaccine side effects.” Some patients with rheumatic conditions are prone to chronic, low-grade fever on a regular basis even when they are not flaring.

Although it may depend on your specific condition, Dr. Cadet considers moderate to severe flares to be those that involve taking high doses of steroids, fever, high inflammation markers, or kidney involvement.

While the ACR notes that there’s a theoretical risk for autoimmune of inflammatory disease patients to flare or experience disease worsening following a COVID-19 vaccination, the benefit of getting the COVID-19 vaccination outweighs this potential risk.

It’s also important to remember that getting sick with COVID-19 can cause disease flares — not to mention countless other health problems, including life-threatening ones. Emerging research suggests that COVID-19 can cause autoantibodies (antibodies that mistakenly target your own tissues or organs) that are linked to autoimmune diseases. These may be tied to the long-hauler symptoms many patients report after having coronavirus, which can resemble chronic fatigue syndrome.

3. You don’t have to wait until a mild cold goes away (but do confirm it’s not COVID-19)  

If you have some sniffles when you’re scheduled to get your vaccine, there’s no need to postpone.

Of course, you should first confirm that it’s not COVID-19 with a negative test result (since the coronavirus can cause as mild symptoms as a runny nose).

The U.S. Centers for Disease Control and Prevention (CDC) states that people with COVID-19 should wait to be vaccinated until they have recovered and have met the criteria for discontinuing isolation.

Part of the reason you shouldn’t get vaccinated while you have COVID-19 is simply that you’ll need to maintain strict isolation measures to ensure you don’t pass the disease onto others.

“If people have symptoms that could be consistent with even mild COVID-19, they should get tested to make sure they don’t have COVID-19,” says Dr. Aronoff. “But if they don’t have COVID-19, they can definitely get vaccinated.”

4. The vaccine may be less effective if you take immunosuppressant medication, but it’s still effective

 It’s expected that the immune response to COVID-19 vaccination for many autoimmune or inflammatory disease patients on immunosuppressant medication will be decreased in compared to the general population, according to the ACR guidance.

But a slightly less effective vaccine is still better than not getting any protection.

“In general, we know that COVID-19 has taken the lives of 500,000 Americans, and we do know that there are long-hauler symptoms,” says Dr. Cadet. “I believe that most of the rheumatology community does think that some immunity is better than no immunity at all — even if you are on some therapies that may blunt the response.”

You may be wondering whether you should temporarily stop taking certain immunosuppressant medications in order to try to improve the effectiveness of the vaccine.

However, the ACR’s guidance does not advise stopping most medications before or after getting the vaccine. Available data (based on what’s known from other kinds of vaccines) shows there’s no reason to think that stopping the following medications will help bolster your body’s immune system response to the COVID-19 vaccine. Keep taking the following medications as prescribed:

• 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)

On the other hand, the guidance states that there may be immune response benefits to temporarily skipping doses of a few certain medications before or after receiving the COVID-19 vaccine — or timing the vaccine to a certain point in your treatment course, if possible.

Although your doctor should provide advice for your unique situation (and may advise against any medication changes based on your disease status), these medications include:

• Methotrexate
• JAK inhibitors (ex: Xeljanz, Olumiant, Rinvoq)
• Abatacept (Orencia), injectable or IV form
• Rituximab (Rituxan)
• Cyclophosphamide infusion

Here’s more on what you need to know about the ACR’s clinical guidance and its recommendations on the timing of these medications.

5. You don’t need ‘perfect’ timing between vaccine doses

Whether because of limited supply of the vaccine in your state, inclement weather, or your own scheduling conflicts, you may find that it’s not possible for your second dose of the COVID-19 vaccine to fit squarely within the recommended time frame of three weeks (for Pfizer-BioNTech) or four weeks (for Moderna) from the first shot.

Of course, it’s best to stick to these recommended intervals whenever possible, since they’re the schedules used in the clinical trials. Plus, the sooner you get your second vaccine dose, the sooner you’ll have the full protection of the vaccine.

However, the U.S. Centers for Disease Control and Prevention (CDC) recently updated its guidance to say that if this is not feasible, the Pfizer and Moderna vaccines can be scheduled for administration up to six weeks (42 days) after the first dose.

“There is nothing magical about the three- or four-week timeframe used by Pfizer and Moderna in their clinical trials, except that they tried to choose the shortest amount of time that they thought was reasonable to actually see an immune boost,” says Dr. Aronoff.

If the researchers had chosen a greater period of time between vaccine doses, such as three months, it would have taken much longer to complete the clinical studies and make the vaccines publicly available.

“Our immune system has a memory and it doesn’t really care about how quickly a vaccine needs to hit the market,” adds Dr. Aronoff. “Our immune system remembers for a long time that we’ve seen something from the past, so it’s highly likely that if you had to wait to get your booster shot, your immune system won’t forget that initial response.”

That said, if you go beyond the six-week window between vaccine doses, experts aren’t certain how this would affect the effectiveness of the booster shot, which works by activating the immune system memory created by the first shot and further bolstering your response to the virus.

“There is currently limited data on the efficacy of mRNA COVID-19 vaccines administered beyond this window,” says Nicholas Kman, MD, an emergency medicine physician at The Ohio State University Wexner Medical Center. “But if the second dose is administered beyond these intervals, there is no need to restart the series.”

In other words, just because you get the second shot later than what’s recommended, you don’t have to start from scratch and get the first shot over again. More research is needed to determine how long immune protection from the vaccine lasts over time.

Keep in mind that it’s actually more important that you don’t inadvertently get scheduled for the second shot before the recommended three to four weeks, since your body needs the opportunity to build up its immune memory in order for the booster shot to be effective.

“If you give the shots too close together, you don’t actually boost an immune response — you just sort of continue to raise the initial response,” says Dr. Aronoff. “You have to wait at least a couple of weeks for the first immune response to be developed so you can boost it.”

Here’s more on what to know about getting the second COVID-19 vaccine dose if you’re immunocompromised or have an autoimmune condition.

6. You’ll still benefit from the vaccine even if it takes a while for others around you to get it

Depending on where you live and your underlying health conditions and medications, you should be able to get vaccinated before the general population.

The ACR clinical guidance notes that household members and other regular, close contacts of autoimmune and inflammatory disease patients should get the COVID-19 vaccine when it’s available to them to create a “cocooning effect” that might help protect the patient.

It’s certainly ideal for everyone in your social circle to get the vaccine, but if they can’t, know that you’ll still enjoy the benefits of protection from getting the vaccine — and you’ll be helping to contribute to herd immunity.

“The more people who either get the vaccine or have had COVID-19, the less the coronavirus can spread,” says Dr. Kman. “Additionally, the virus has to spread to evolve, which is how variants develop. It helps the general population, or the greater good, for more people to be immunized — this is how herd immunity develops.”

However, it’s important to still follow standard mitigation efforts after you receive the vaccine. Experts believe that the COVID-19 vaccine may be similar to the flu vaccine: While immunization provides extremely important protection, there may still be a small chance of infection (though you’d be less likely to have symptoms or serious illness and you’d be less contagious).

After getting your COVID vaccine, make sure you continue to maintain a social distance of six feet or more from people outside your household whenever possible, wear face masks when out in public and when you can’t be socially distant, wash or sanitize your hands frequently and disinfect commonly touched surfaces, avoid large groups or situations when it will be hard to be socially distance, and remember that being outdoors is safer than being indoors when you spend time with others.

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