SSc patients slow to get COVID-19 vaccine over flare-up fear

Few vaccinated patients reported symptoms worsening, according to survey by Margarida Maia, PhD | June 4, 2024

More than half of people with systemic sclerosis (SSc) who hesitated to get vaccinated against COVID-19 were concerned they might have a flare-up, but very few vaccinated patients have reported their symptoms worsening, according to a 2021–2022 survey study.

“Even though the peak of the pandemic has passed, COVID-19 infections and hospitalizations continue to present substantial risk for vulnerable people with autoimmune rheumatic diseases, including SSc,” said the study’s researchers, who noted that patients who are unsure about a vaccination should be informed of its safety. The study, “COVID-19 vaccinations and infections among individuals with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study,” was published in Seminars in Arthritis and Rheumatism.
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When vaccines against COVID-19 were made available, there was little information on their safety in people with autoimmune rheumatic diseases. Concerns that getting one may have serious side effects led many people to hesitate.

Few side effects with COVID-19 vaccine
A 2021 survey study of the international Scleroderma Patient-centered Intervention Network (SPIN) found that people with SSc who got vaccinated against COVID-19 fared well, with no serious side effects and few reports of worsening symptoms.

About a year later, the researchers ran a new survey. Of the 489 patients who completed it, 437 (89%) were fully vaccinated, that is, they received both primary and booster doses. Some 39 (8%) didn’t receive a booster and 13 (3%) were unvaccinated.

Of 960 patients who responded to either survey, or both, about a third (34%) reported at least one side effect, most frequently a sore arm or fatigue. A worsening of symptoms of SSc was reported after the first and second doses in 6% of patients, and by 4% after the booster.

Some patients were taking methotrexate or mycophenolate mofetil, two immunosuppressants used to treat SSc. Up to 19% reported they temporarily stopped or reduced the medication after a first, second, or booster dose.

Of 52 patients who weren’t fully vaccinated with the complete primary vaccination schedule and booster dose in 2022, 29 (56%) were concerned they may have a flare-up. Moreover, more than a third (37%) “agreed or strongly agreed that they did not have enough information to confidently make a decision about the vaccine.”

In 2022, more than a third (35%) of patients, including fully vaccinated (32%), partially vaccinated (64%), and unvaccinated patients (54%), reported having contracted COVID-19 at least once. Symptoms ranged from none to severe, and 15 (9%) required hospitalization.

Concerns about worsening symptoms of SSc were a major reason for hesitating about getting fully vaccinated, but few patients had a flare-up after receiving a vaccine.
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“While differences likely exist between those who are ‘unlikely’ to be vaccinated and those [who] report that they “would certainly not” be vaccinated, physicians should continue to educate patients who are not fully vaccinated to help address this knowledge gap,” the researchers said.