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As cases of COVID-19 begin to surge (again) across America and around the world, you may still be wondering: Should I stop taking my disease-modifying medications for inflammatory conditions? No? Are you sure?
It’s a common question, and one that doctors have been fielding and researchers have been investigating since the start of it all.
For most people, the answer is no.
Doctors are urging people who take disease-modifying medications (such as methotrexate or biologics) to keep taking them, even though these medications can be considered “immunosuppressive.”
“Virtually all of my patients are concerned about the safety of their medications with respect to COVID-19,” says Joel M. Gelfand, MD, Medical Director in the Dermatology Clinical Studies Unit and Director of the Psoriasis and Phototherapy Treatment Center at the University of Pennsylvania Perelman School of Medicine in Philadelphia. He estimates that “roughly 10 percent of my patients have stopped their meds due to worries about the pandemic.”
Similar to pre-pandemic times, patients should never stop or decrease their medication without speaking with their health care provider.
“The risk of stopping medication [on your own] is that you could flare and have uncontrolled disease, which could lead to hospitalization,” says gastroenterologist Ryan Ungaro, MD, Assistant Professor at The Susan and Leonard Feinstein IBD Center at the Icahn School of Medicine at Mount Sinai in New York City.
Current guidance from the American College of Rheumatology says that healthy patients who do not have a COVID-19 infection or a known exposure should not stop taking their disease-modifying medication.
“The data that’s available suggests that if you do get COVID-19, the vast majority of medications do not increase your risk of hospitalization,” says Peter Izmirly, MD, Associate Professor of Rheumatology at NYU Langone Health in New York City. “Being off of your medication will make your quality of life worse and put you at increased risk for significant disease flares that can lead to lifelong complications.”
Read on to find out what leading rheumatologists and researchers want you to know about continuing your disease-modifying medications as the COVID-19 pandemic continues.
1. The data on COVID-19 complications in inflammatory disease patients is reassuring
The majority of studies have found that the risk of getting COVID-19 is not higher simply because you have an inflammatory or rheumatic disease or take disease-modifying medications to treat it.
“There have been several large studies where rheumatic disease patients were surveyed, and the overall incidence of COVID-19 appears to be low and similar to that of the general population,” says Kristin M. D’Silva, MD, a rheumatologist at Massachusetts General Hospital in Boston, who is currently researching COVID-19 outcomes in rheumatology patients.
However, she acknowledges that this “may in part be due to stricter physical distancing measures taken by patients with rheumatic diseases compared to the general population.” For example, research shows that people with rheumatic conditions are isolating more.
While researchers are still studying whether taking medications that modify your immune system make you more susceptible to the coronavirus (or more likely to develop complications if you do get COVID-19), the current research suggests mostly good news.
A lot of the data on how COVID-19 is affecting people with arthritis and rheumatic conditions has come from the COVID-19 Global Rheumatology Alliance (GRA), an international registry of patients.
Rheumatologists enter data on people who have contracted COVID-19 (including their underlying health issues, medications, and more) and any complications and overall outcomes.
So far, more than 6,800 rheumatic disease patients all over the world have been included in the registry. The data suggests that conventional disease-modifying medications (such as methotrexate), biologic medications, and targeted synthetic DMARDs (such as JAK inhibitors) do not increase the risk of severe COVID-19, says Dr. D’Silva.
“They also reported that patients on biologic/targeted synthetic DMARDs, especially TNF inhibitors, may actually be protected from poor COVID-19 outcomes. These findings must be validated in additional data sets, but it is certainly reassuring,” she says.
This potential protective effect may have to do with the way these medications reduce inflammation, which is thought to play a role in COVID-19 complications.
One exception: oral corticosteroids (such as prednisone)
Steroids suppress the immune system and are known for increasing the risk of many different kinds of infections. Data shows that people have a greater risk of developing COVID-19 complications if they’re taking higher doses of steroids when they contract the coronavirus. “Data from GRA found that patients on prednisone-equivalent doses higher than 10 mg daily are at higher risk of poor outcomes such as hospitalization,” says Dr. D’Silva.
(Keep in mind that this finding is different from the steroid dexamethasone being used to treat COVID-19 in hospitalized patients. When given later in the course of COVID-19 infection, dexamethasone appears to help stop inflammation and has been shown to reduce COVID-related deaths.)
People who are taking oral steroids for inflammatory arthritis or other conditions typically need these medications to manage flares, so doctors don’t suggest that people stop taking them across the board. But it may be wise to ask your doctor about your dosage and whether it makes sense to try to taper or manage your condition with other medications.
2. Flares should be taken seriously
A disease flare is a sign that your condition — be it rheumatoid arthritis, Crohn’s disease, or psoriasis — is not well-controlled. This means your immune system may be less able to fight off infection. During a flare, your immune system is overactivated and distracted from doing other things it’s supposed to be doing, like fighting off infection (perhaps even COVID-19, although there are no studies to confirm this yet).
Many patients who stopped taking their medications early in the pandemic experienced serious flares of their disease, notes Dr. Gelfand.
For example, CreakyJoints member Natalie H., who stopped methotrexate injections in February, shared on Facebook that she has been experiencing more frequent flares and is considering restarting her medication.
In addition to impacting quality of life and lowering your body’s defenses, flares often require high doses of glucocorticoids (steroids) to get things under control. And this may increase the risk for poor COVID-19 outcomes, says Dr. D’Silva.
“Minimizing steroid exposure is one of the most consistent recommendations that can benefit any rheumatic disease patient,” says Elizabeth R. Graef, DO, a rheumatologist in Boston. That said, if you are taking steroids and nervous about COVID-19 risk, do not attempt to taper them on your own without consulting your doctor, she warns.
3. Comorbidities are a bigger risk factor than your inflammatory disease
It is common for people living with inflammatory diseases (especially with severe disease) to have co-occurring health issues, called comorbidities. Some of these health conditions, like obesity, diabetes, high blood pressure, kidney disease, heart disease, or lung disease, are associated with an increased risk for COVID-19 complications, says Dr. Gelfand.
One study recently published in the journal Gastroenterology found that Crohn’s disease and ulcerative colitis patients who are older or have multiple comorbidities in addition to inflammatory bowel disease, have higher rates of severe COVID-19. These are similar risk factors to those of the general population, says Dr. Ungaro.
More research is showing that “traditional risk factors seem to trump the ‘immunosuppressant’ risk factor,” adds Dr. Izmirly.
In other words, if you’re Black, have lupus and other comorbidities (like hypertension and lung disease), and you’re on immunosuppressant medication, it’s likely that your race and comorbid problems are bigger risk factors for COVID-19 than merely taking an immunosuppressing medication, he explains.
If you have inflammatory disease plus such comorbidities, this information isn’t meant to scare you, but to urge you to weigh the risk and benefits of stopping your medications based on your own personal COVID-19 risk and medical history — and, of course, to continue to prevent COVID-19 infection by wearing a face mask, avoiding crowds, social distancing, and using hand hygiene.
“Poor COVID-19 outcomes are also thought to be related to the ‘dose’ — or viral load — of virus a person is exposed to,” says Dr. Gelfand. “This is why wearing masks, maintaining distance, and avoiding prolonged exposure to crowded indoor spaces is so important.”
4. It’s a shared decision
Perhaps the biggest takeaway is to talk to your doctor if you’re worried about how your medications could affect your risk of COVID-19.
“Every single patient with inflammatory or rheumatic disease is a unique individual with unique circumstances, whether their underlying diagnosis, the medications they’re on, what they do for work, and who lives in their household,” says Dr. Graef. “When discussing COVID-19 risk, there is so much more to consider than just what meds people are on — it’s also about how they are interacting with the world and how the world is interacting with them.”
By working with your health care provider, you can better understand the risks, benefits, and alternatives given your individual circumstances and preferences, says Dr. Gelfand. “I’m a strong believer in shared decision-making, so I do not try to convince my patients of anything,” he adds.
Instead, Dr. Gelfand shares the reassuring data regarding psoriatic treatments and COVID-19 and discusses the challenges of dealing with flaring psoriatic disease during a pandemic.
And for those who may still elect to pause their treatment, “we discuss the importance of keeping in touch so we can restart therapy if necessary and without delay,” he says.
5. Quality of life matters
For most patients, the benefit of treating their rheumatic disease and minimizing flares should outweigh the uncertainty of disease-modifying medications on COVID-19.
Sure, no one’s quality of life is ideal right now, but stopping your meds may make it even worse. “Living through a once-in-a-millennium pandemic is stressful enough,” says Dr. Gelfand, “without adding the burden of uncontrolled disease on top of this already difficult period.”
The bottom line: While you should always consult your doctor about your personal situation, the general plea from doctors who treat inflammatory and autoimmune conditions is this: Do not let the fear of COVID-19 stop you from taking your medication and managing your disease.
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Benucci M, et al. Serological tests confirm the low incidence of COVID-19 in chronic rheumatic inflammatory diseases treated with biological DMARD. Annals of the Rheumatic Diseases. June 2020. doi: http://dx.doi.org/10.1136/annrheumdis-2020-218214.
COVID-19 Guidance. American College of Rheumatology. https://www.rheumatology.org/Practice-Quality/Clinical-Support/COVID-19-Guidance.
Gianfresco M. Characteristics associated with hospitalisation for COVID-19 in people with rheumatic disease: data from the COVID-19 Global Rheumatology Alliance physician-reported registry. Annals of the Rheumatic Diseases. June 2020. doi: http://dx.doi.org/10.1136/annrheumdis-2020-217871.
Interview with Elizabeth R. Graef, DO, a rheumatologist in Boston
Interview with Joel M. Gelfand, MD, Medical Director in the Dermatology Clinical Studies Unit and Director of the Psoriasis and Phototherapy Treatment Center at the University of Pennsylvania Perelman School of Medicine in Philadelphia
Interview with Kristin M. D’Silva, MD, a rheumatologist at Massachusetts General Hospital in Boston
Interview with Peter Izmirly ,MD, Associate Professor of Rheumatology at NYU Langone Health in New York City
Interview with Ryan Ungaro, MD, Assistant Professor at The Susan and Leonard Feinstein IBD Center at the Icahn School of Medicine at Mount Sinai in New York City
Serling-Boyd N, et al. Outcomes of COVID-19 Infection in Patients with Rheumatic Diseases in a Multicenter Healthcare System: A Comparative Cohort Study [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/outcomes-of-covid-19-infection-in-patients-with-rheumatic-diseases-in-a-multicenter-healthcare-system-a-comparative-cohort-study.
Singh S, et al. Risk of Severe Coronavirus Disease 2019 in Patients With Inflammatory Bowel Disease in the United States: A Multicenter Research Network Study. Gastroenterology. October 2020. doi: https://doi.org/10.1053/j.gastro.2020.06.003.