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

Few vaccinated patients reported symptoms worsening, according to survey

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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A man is receiving a shot in the arm from a doctor.

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.

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.

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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.

“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.