Survey of COVID-19 vaccination experiences in patients with systemic rheumatic disease

Plain Language Summary: 

Survey of COVID-19 vaccination experiences in patients with systemic rheumatic disease 

Study Title 

Early experience of COVID-19 vaccination in adults with systemic rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Survey by Sattui et al., RMD Open, September 2021 

Lay summary contributors 

Ariella Coler-Reilly, Richard A. Howard 


COVID-19 vaccines were mostly tested on healthy people, excluding those suffering from disease. This means that we do not have much data on vaccine effectiveness or side effects for patients with systemic rheumatic diseases, like arthritis or lupus. 

Patients with rheumatic diseases may have unique concerns regarding vaccination. Rheumatic diseases may affect the functioning of the immune system, which could affect the body’s response to vaccination. Moreovermany medications used to manage rheumatic diseases also affect the immune system, so it may be beneficial to pause these medications around the time of vaccination. Of course, patients may be concerned about how pausing their medications will affect their symptoms; in particular, patients may worry they will experience a disease flare. 

The COVID-19 Global Rheumatology Alliance is using a variety of methods to obtain more data on this subject, including conducting extensive international surveys like this one. 

What was done? 

The COVID-19 Global Rheumatology Alliance surveyed adult patients with rheumatic diseases who received at least one dose of any COVID-19 vaccine. Surveyed patients were asked to report basic information such as: demographics (age, nationality, ethnicity, etc.)diagnosesdisease activity (ranging from remission to severely high activity), and medications. 

Surveyed patients were also asked about their experiences discussing vaccination with their healthcare providers. In particular, questions focused on whether patients were willing to pause their medications to potentially increase vaccine effectiveness. 

Finally, patients were asked if they experienced side effects from the vaccine, including flares of their rheumatic disease symptoms. 

What was found? 

2860 eligible patients completed the survey as of April 30, 2021. The most common rheumatic diagnoses were rheumatoid arthritis, inflammatory myositis, Sjögren’s syndrome, systemic lupus erthyematosus, and spondyloarthritis. The most common medications in use were DMARDS (disease-modifying anti-rheumatic drugs, especially methotrexate, antimalarials like hydroxychloroquine, and TNF-inhibitors), steroids (systemic glucocorticoids, like prednisone), and NSAIDS (non-steroidal anti-inflammatory drugs, like ibuprofen). 

Most respondents said they would be willing to pause their medications if it would improve vaccine effectiveness(Thus far, however, more than 70% reported they had not made any changes to their medication regimen during vaccination.) Of note, patients taking systemic glucocorticoids expressed the least willingness to pause their regimen; roughly half of these patients were either unwilling or unsure about it. The most common concern among all patients, regardless of their medications, was the risk of disease flare. Among patients taking systemic glucocorticoids specifically, there were also substantial concerns about withdrawal effects. 

Side effects were similar to those experienced in the general population. The most common was fatigue, followed by headaches, then joint and muscle aches. Persistent flares of rheumatic disease (flares at least two days post-vaccination) were uncommon, presenting in only 1 out of 8 respondents. Serious flares (requiring a change in medication regimen) were even rarer, presenting in less than 1 in 20 respondents. When comparing different types of vaccines, there were no obvious differences in the frequency of side effects or disease flares. 

What does this mean? 

Nearly 3000 adults with various rheumatic diseases were surveyed, providing a detailed picture of patient experiences and concerns regarding vaccination. Many respondents were worried about the risk of disease flares, either caused by vaccination itself or by medication changes during vaccination. The data so far suggest that persistent disease flares resulting from vaccination were uncommon and usually mild. Overall, vaccine side effects were similar to those experienced in the general population. These findings are reassuring and consistent with previous studies.

There were some important limitations to this study. First, only responses from vaccinated respondents were analyzed, meaning the experiences and concerns of patients who chose not be vaccinated were not considered in this study. Future studies from this survey will examine those experiences. Second, most respondents were highly educated, white, and from North America or Europe. It is unclear if patients from other backgrounds would have similar experiences and concerns. Third, due to the timing of this survey, there were few respondents who were vaccinated with the Janssen/Johnson & Johnson vaccine, meaning no conclusions can be made about the effects of that vaccine in this study.