Background/Purpose: Patients with autoimmune rheumatic diseases have concerns about getting the COVID-19 vaccine. As vaccines began to receive emergency use authorization, individuals with conditions like rheumatoid arthritis (RA), looked for information to help make informed decisions. As a patient living with RA for 15 years, and on immunomodulating therapy for it, I was hesitant about getting the COVID-19 vaccine and needed to weigh the risks and benefits to feel confident getting a shot.

Intervention: People living with autoimmune diseases have nearly twice the risk of acquiring severe, vaccine-preventable infections. I was looking for reliable information about the new vaccine’s safety and efficacy, and information that would be specific to my needs and experience with RA. I knew that there wasn’t much information available on these vaccines that was specific to people with conditions like RA, so I was unsure of whether or when to get vaccinated. My questions were about whether to pause my RA medication, when to do so, and for how long. I wanted to know about possible side effects, like RA flare, and to learn if one of the three available vaccines was best suited for me. I searched online for resources to help me make a decision and gain confidence about my choice.

Given the rapidly changing information about COVID-19, I was anxious to know what was and wasn’t evidence-based at every step (Figure 1). In my search, I came across the COVID-19 Patient Support Program offered by the Global Healthy Living Foundation (GHLF). The program shared up-to-date reliable information about COVID-19 through webinars, articles, and a newsletter circulated approximately weekly. Part of keeping up with the rapidly changing informational landscape involved accessing an online collection of fact-checked articles for patients called “COVID-19 Vaccine Information for Immunocompromised Patients” curated by GHLF and informed by medical experts. I learned through an informational webinar organized by GHLF about the American College of Rheumatology (ACR) guidance on COVID-19 vaccination for patients with autoimmune rheumatic diseases that it is important to know what questions to ask, especially when the evidence is changing or incomplete. In addition, after reading a Patient Support Program article called 7 Questions to Ask Your Rheumatologist If You’re Nervous About Getting the COVID-19 Vaccine, I was able to bring questions to with my doctor to help me reach a decision. Ultimately, I decided to get the COVID-19 vaccine (Figure 1).

Maintenance: I continue to have ongoing discussions with my rheumatologist about my concerns despite being fully vaccinated. This means I must stay updated by seeking out information on what experts are learning about COVID-19 as new evidence emerges.

Quality of Life: Being part of an online community like GHLF/CreakyJoints allowed me to voice my concerns and anxieties and to easily find information to address them. This allowed for more meaningful conversations between me and my doctor and helped me make an important decision: whether to get the COVID-19 vaccine. Now that I am fully vaccinated, I feel safer. I am enjoying life outside and socializing after being home for more than a year.

Figure 1. My steps to arrive at an informed decision about the COVID_19 vaccine

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/should-i-get-the-covid-19-vaccine-with-my-ra-using-evidence-based-resources-for-decision-making/