Here’s what rheumatologists and other specialists are telling their patients about getting the vaccine even during higher than usual disease activity.
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If you live with an autoimmune or inflammatory disease, you’ve likely become accustomed to disease flares occurring at inopportune times in your life. However, when it comes to a flare striking when you’re scheduled to get the COVID-19 vaccine, it can be difficult to know what steps to take next. Is it okay to still get the COVID-19 vaccine even if you’re in the middle of a disease flare? Or could the COVID-10 vaccine itself cause a disease flare?
Here’s everything you need to know about getting the vaccine during a disease flare, and whether or not it will make your disease activity worse.
Will the COVID-19 Vaccine Worsen a Disease Flare?
First things first: There are no contraindications for getting the COVID-19 vaccine for patients with autoimmune or inflammatory rheumatic disease, according to clinical guidance from the American College of Rheumatology (ACR). In fact, the only contraindication to receiving the vaccine is if you have known allergies to vaccine components (and even then, your doctor may weigh the benefits with the risks and still encourage you to get vaccinated).
While there is a hypothetical risk that a disease flare could worsen after COVID-19 vaccination, the ACR guidance notes that the benefits of vaccination outweigh the potential risk.
“Vaccinations work by stimulating the immune system to respond to specific parts of viruses to both protect from infection and dampen severity of infection,” says Jeffrey Sparks, MD, MMSc, Assistant Professor of Medicine at Harvard Medical School and a rheumatologist at Brigham and Women’s Hospital in Boston. “It is theoretically possible that the vaccination may also stimulate the immune system in other ways, perhaps manifesting as a flare of an underlying condition such as rheumatic disease.”
There is no data yet that shows this is occurring specifically for the COVID-19 vaccine, though researchers are studying this. What’s more, many rheumatic disease patients have already received the COVID-19 vaccine, and there has been no clear indication that it has led to flare issues.
It’s also important to keep in mind that flares can occur randomly, including right after you get the vaccine. “Since so many people are receiving the COVID-19 vaccine, sometimes a flare may occur after the vaccine by chance alone, but not be caused by it,” says Dr. Sparks. “Rheumatic disease patients routinely receive several vaccinations without any safety issues — and at this time, I have no reason to believe the COVID-19 vaccine will be different.”
Many experts consider the potential risk of an exacerbated flare to be outweighed by the benefits of getting the vaccine.
“Whether vaccines can ultimately cause a disease flare still needs to be seen,” says rheumatologist Magdalena Cadet, MD, Associate Attending Physician at NYU Langone Health in New York City. “Even if patients have chronic conditions, it’s felt that to prevent COVID-19 and serious complications, having some immunity is worth the benefit versus the risk.”
“COVID-19 is a potentially devastating infectious disease that can not only put people in the hospital or cause death, but may leave people with significantly life-altering disabilities,” says David Aronoff, MD, Director of the Division of Infectious Diseases at Vanderbilt University School of Medicine in Nashville, Tennessee. “Getting immunized helps provide another layer of protection against having devastation from COVID-19, while trying to manage a chronic condition like rheumatoid arthritis that can itself cause disabilities.”
The COVID-19 vaccine is also not likely to cause a flare of inflammatory bowel disease (IBD), and disease activity of IBD should not impact the timing of COVID-19 vaccination, according to guidance from the International Organization for the Study of Inflammatory Bowel Disease.
For more on the safety and side effects of the vaccine, here are the outcomes from the first month of vaccine distribution. No serious safety problems were detected from either the Pfizer or Moderna vaccine in the first month of rollout.
When Should You Postpone Getting the COVID-19 Vaccine Because of a Disease Flare?
Of course, there are caveats, such as the severity of a disease flare.
“Generally, rheumatologists recommend nearly all patients receive the COVID-19 vaccine, but there may be unique circumstances where it would be reasonable to delay receiving it,” says Dr. Sparks. “This may include a serious current flare or medical instability, typically requiring current hospitalization.”
Many doctors recommend the COVID-19 vaccine for patients not requiring hospitalization, but the timing and possible medication adjustments would need to be discussed on an individual basis.
One reason your doctor might recommend postponing the vaccine is if you are currently being treated with high levels of steroids to manage your flare, which may affect your immune system’s response to the vaccine. This may be the case if you’re taking high-dose steroids for any number of conditions, including rheumatoid arthritis, inflammatory bowel disease, multiple sclerosis, or others.
“The concern is the level of steroids that a patient might be taking,” says Jami Kinnucan, MD, a gastroenterologist who treats patients with Crohn’s disease and ulcerative colitis at Michigan Medicine. “From previous vaccination studies, we think that when patients are taking more than 20 milligrams of steroids per day, there might be a blunted or reduced response to the vaccine.”
This is also why doctors may recommend hospitalized patients postpone the vaccine.
“Most of our patients with severe IBD flares who are hospitalized are getting high doses of IV steroids, so it’s not necessarily that we’re concerned with the safety of them getting the vaccine — I don’t think that would change,” adds Dr. Kinnucan. “I’m more concerned that we’re giving them a limited resource, like a COVID-19 vaccine, and they may not develop the optimal response to protect them.”
Ideally, that patient would get to a state of lower disease activity, transition to a non-steroid therapy, and taper their steroid dosing (all under the guidance of their doctor) — then receive the COVID-19 vaccine at the soonest opportunity.
But if a patient has multiple comorbidities, is at high risk for poor outcomes from COVID-19, and can’t taper off steroids, they would need to determine the best plan of action with their health care provider.
“The risk of being vaccinated at that time is really just a reduced efficacy of the vaccine,” says Dr. Kinnucan. “In general, I believe that all patients with inflammatory bowel disease should be vaccinated when they’re eligible for COVID-19 vaccine.”
Your doctor may decide that some immune protection from COVID-19 is better than none at all, and direct you to receive the vaccine even if you’re having a bad flare or are taking high-dose steroids.
“The amount of immunity to the coronavirus that keeps someone from dying from the infection or that is the difference between being hospitalized or not is not really well-defined, but it is likely that some immune protection is better than no immune protection when it comes to this virus,” says Dr. Aronoff.
How Should You Track Vaccine Side Effects If You’re Already Having a Flare When You Get It?
It’s important to discuss the COVID-19 vaccine, your current disease activity, and any possible medication changes with your rheumatologist to determine what symptoms may be due to side effects from the vaccine and which may be due to a disease flare.
Sometimes it can be difficult to distinguish common side effects of the vaccination — which include fever, fatigue, and muscle aches — from a disease flare.
“Most vaccine side effects last fewer than three days, so longer-lasting and severe symptoms should be discussed with the rheumatologist or other health care provider,” says Dr. Sparks. “For vaccine side effects, medications like acetaminophen and non-steroidal anti-inflammatory drugs can be helpful but, if possible, should not be taken prior to developing symptoms.”
Dr. Sparks notes that pre-medicating with these drugs is not recommended since they could theoretically blunt the immune response to the vaccine. If you need to take these medications regularly for your inflammatory disease, talk to your doctor about whether or not any changes should be made prior to receiving the COVID-19 vaccine.
What About Stopping Immunosuppressant Medication Before or After Getting the COVID-19 Vaccine?
You likely should not stop most medications before or after getting the vaccine, according to the ACR’s guidance. Available data (based on what experts know about other 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.
You should 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)
However, the guidance states that temporarily skipping doses of a few certain medications before or after receiving the COVID-19 vaccine — or timing the vaccine around your treatment course — may improve your immune response.
Your doctor should provide guidance for your unique situation (and may advise against any medication changes based on your disease status, such as if you’re having a flare), but these medications include:
Methotrexate
JAK inhibitors (ex: Xeljanz, Olumiant, Rinvoq)
Abatacept (Orencia), injectable or IV form
Rituximab (Rituxan)
Cyclophosphamide infusion
“We’ve had patients call us if they’ve had a concerning reaction,” says Dr. Kinnucan. “One patient had a rash after the vaccine, and it was the only case I can think of that wasn’t a classic symptom of the vaccine. It’s hard to say whether that was vaccine-related or not — that patient was sent to dermatology.” Dr. Kinnucan notes that this patient was also exposed to antibiotics weeks earlier, which may have played a role, and that they tolerated the second dose of the shot without any issues.
The Importance of Getting the COVID-19 Vaccine for Immunocompromised Patients
Many doctors are urging their patients to get the COVID-19 vaccine and working together to decide how to manage disease flares before and after the shots.
“None of my patients have had any unexpected issues with the COVID-19 vaccine so far,” says Dr. Sparks. “I have had a few patients with new-onset rheumatic disease who needed to start medications and were also due to receive the COVID-19 vaccine soon. Rather than keeping the patient untreated with symptoms from active rheumatic disease, we initiated treatment and also outlined a plan for what to do with medications before and after receiving the COVID-19 vaccine.”
This type of approach may be especially important if you’re already experiencing complications from your chronic disease, and you’re also at high risk for poor outcomes due to COVID-19.
Many doctors emphasize that the benefits of the vaccine outweigh the risks for most patients, even if you’re experiencing a disease flare when you get the vaccine.
“All of the COVID-19 vaccines are very safe and effective,” says Dr. Sparks. “The chance of having a bad outcome from COVID-19 infection is much higher than any theoretical risk from the vaccine. I highly recommend the COVID-19 vaccine to patients with rheumatic diseases.”
Here’s more on what doesn’t need to be “perfect” for you to benefit from the COVID-19 vaccine if you’re immunocompromised.
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Sources
COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. American College of Rheumatology. February 8, 2021. rheumatology.org/Portals/0/....
Interview with David Aronoff, MD, Director of the Division of Infectious Diseases at Vanderbilt University School of Medicine in Nashville, Tennessee
Interview with Jami Kinnucan, MD, a gastroenterologist who treats patients with Crohn’s disease and ulcerative colitis at Michigan Medicine
Interview with Jeffrey Sparks, MD, MMSc, Assistant Professor of Medicine at Harvard Medical School and a rheumatologist at Brigham and Women’s Hospital in Boston
Interview with rheumatologist Magdalena Cadet, MD, Associate Attending Physician at NYU Langone Health in New York City
Siegel CA, et al. SARS-CoV-2 vaccination for patients with inflammatory bowel diseases: recommendations from an international consensus meeting. The BMJ. January 20, 2021. doi: doi.org/10.1136/gutjnl-2020....
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