The beginning of the COVID-19 pandemic in the spring of 2020 upended life for everyone, but it was particularly challenging for people with autoimmune or inflammatory rheumatic conditions. Without much data to guide them, patients had a lot of questions about their risk for coronavirus infection and complications, and how to handle their immunosuppressant medications.
We now know that there’s no good reason to stop taking medication (unless you get sick with COVID, and even then, you shouldn’t stop without talking to your doctor), but at the start of the pandemic, answers weren’t so clear-cut. Patients were experiencing a lot of anxiety about navigating the pandemic while managing chronic illnesses that could impact their risk.
Researchers at the Hospital of the University of Pennsylvania and a team of other research partners, including the Global Healthy Living Foundation, set out to better understand how issues such as patients’ anxiety, medication interruptions, and disease flares were interconnected.
In a study presented during ACR Convergence 2021, the annual meeting of the American College of Rheumatology, the research team asked members of ArthritisPower and the Vasculitis Patient-Powered Research Network to fill out surveys that included questions about their anxiety levels, medication regimens, and disease flares. (ArthritisPower is a patient-centered research registry from CreakyJoints and GHLF.)
Researchers surveyed 2,396 patients between March and June 2020, with at least one follow-up survey done through February 2021. The most common rheumatic conditions were psoriatic arthritis, rheumatoid arthritis, and vasculitis. Patients were mostly female (87 percent), with an average age of 57. Commonly taken medications included biologics and JAK inhibitors, methotrexate, hydroxychloroquine, and glucocorticoids.
The Link Between Anxiety, Medication Interruptions, and Disease Flares
People who reported higher anxiety scores reported medication interruptions more commonly than those with lower anxiety scores. Medication interruptions were reported by 10.5 percent of people with higher anxiety scores but in 7.5 percent of those with lower anxiety scores.
A medication interruption means deciding to stop taking the medication you take to treat your rheumatic condition for an extended period of time. According to the study, the interruptions were not reported as being recommended by the patients’ physician.
The study does not prove causation, so it’s not clear whether people who had anxiety about the pandemic were more likely to want to stop taking medication, whether people who decided to stop taking their medication reported more anxiety as a result, or both.
Overall, medication interruptions decreased over time during 2020 — they were reported by 11 percent of participants in April 2020 and by 7.5 percent of participants in December 2020. However, medication interruptions (and a corresponding uptick in anxiety) increased in February of 2021, which researchers suspect was tied to either or both the rollout of the COVID-19 vaccine or the national surge in COVID-19 cases.
Medication interruptions were linked to an increased risk of having a severe disease flare.
Researchers Weigh In: What These Findings Mean for You
We spoke with study authors Michael George, MD, Assistant Professor of Medicine at the Hospital of the University of Pennsylvania, and rheumatology resident Tiffany Dharia, MD. Find out more about this research and why these findings are important for you.
Why were medication interruptions were more common in those with higher anxiety? Could anxiety be driving medication non-adherence?
Dr. George: “COVID has been a huge source of anxiety for everyone, and especially for patients with autoimmune conditions who may be at higher risk of severe disease. We know that many patients are concerned about the risk of infection with their medications even in more normal times, and we think that people who had higher anxiety scores were likely more concerned about how their medications might affect their risk of COVID due to immunosuppression, leading to more medication discontinuations.”
Dr. Dharia: “Their anxiety was likely heightened by lack of direct access to care and lack of in-person office visits that may have changed their management as well.”
How should patients and providers be communicating about medication interruptions?
Dr. George: “I think that provider-patient communication is a critical piece here. Providers need to try to create a safe space for patients to share their concerns and let their physician know if they have stopped their medication without feeling judged.”
Dr. Dharia: “One key point: You can’t have a good conversation if a patient isn’t connected to the practice. The patients at highest risk are those who have been lost to follow-up, which is something the pandemic had a big impact on. We need to find ways to make sure we are staying in close communication with patients.” [Note: “Lost to follow-up” means patients who “ghost” their doctors or stop seeing their doctor for regular care.]
Why is it important to keep taking your medication?
Dr. George: “Keeping [your] autoimmune disease under good control may actually help protect against infection.”
Dr. Dharia: “At the same time, we need to acknowledge that we don’t have all of the answers; there is still a lot we don’t know about the effect of medications on infection risk, the impact on vaccines, and many other topics. Even with uncertainty, though, we can be there to help patients make decisions about their health.”
As a general rule, you should stay on the medication you take to treat your rheumatic condition. Your doctor may recommend you temporarily pause your medication if you get sick (with COVID-19 or another infection) to help your body recover more quickly. They may also recommend you temporarily pause your medication when you get the COVID-19 vaccine, including a third or booster dose, to help your body mount a stronger immune response. This depends on which medications you take — not all of them need to be paused — and your overall health. If pausing your medication is likely to cause a disease flare, your doctor may not recommend it.
What do these findings mean for patients who are considering stopping their medication — for example, when they get a COVID vaccine booster or third shot?
Dr. George: “Prolonged interruptions in medications are likely to lead to disease flares, as shown in our study. Longer interruptions, however, are likely quite different from short one- to two-week interruptions around the time of vaccination.”
Dr. Dharia: “For many patients, brief interruptions around the time of vaccination likely do not put them at high risk of flare. Decisions on whether to stop medications around the time of vaccination or booster doses is one that patients should make in collaboration with their rheumatologist.”
Read here about the current COVID-19 vaccine guidance from the American College of Rheumatology.
What is the main takeaway of these findings for patients?
Dr. George: “The main takeaway is that medication interruptions can have a substantial effect on patient health and contribute to disease flares. Close communication between patients and providers is critical.”
Found This Study Interesting? Get Involved
If you are diagnosed with rheumatoid arthritis or another rheumatic or musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.
Dharia T, et al. Trends in medication interruptions and associations with disease flares during a public health crisis: longitudinal data from patients with autoimmune rheumatic diseases during the COVID-19 pandemic [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/trends-in-medication-interruptions-and-associations-with-disease-flares-during-a-public-health-crisis-longitudinal-data-from-patients-with-autoimmune-rheumatic-diseases-during-the-covid-19-pandemic.
Interview with Michael George, MD, Assistant Professor of Medicine at the Hospital of the University of Pennsylvania.
Interview with rheumatology resident Tiffany Dharia, MD.