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A one-unit increase on a disease activity score might not seem like a big deal, but it could signal an increased risk of organ damage and early mortality down the line. That’s the key finding of a new study that appears in the journal Lupus Science & Medicine. The good news is that by paying attention to even such a seemingly small increase in disease activity, you and your rheumatologist can work together to keep you safe.

The research, which was conducted by scientists at Johns Hopkins University, assessed nearly 1,200 systemic lupus erythematosus (SLE) patients who were enrolled in the Hopkins Lupus Cohort for at least two years between 1987 and 2010.

Researchers analyzed demographic, clinical, and laboratory data on each patient, and disease activity scores were calculated using the SELENA-SLEDAI index, a tool used to assess disease activity across 24 different disease descriptors in patients with SLE. Some of the measures assessed include: presence of seizures, eyesight issues, and mouth ulcers, for example.

For purposes of this study, the researchers assessed participants during a “background period,” which was defined as 12 months after joining the Cohort; an “observation period,” which was defined as the subsequent 12 months (year two in the study); and a “follow-up period,” which was the remainder of time a participant was still alive and providing data through the Cohort. The average follow-up period was seven years.

The authors concluded that each one-unit increase in SELENA-SLEDAI during a 12-month observation period “was associated with an increased risk of death and developing cardiovascular and renal damage.” That means even a slight uptick in disease activity early on translated to a serious, negative outcome within about seven years.

Overall, 39 percent of participants developed new organ damage (such as heart damage or liver damage) during the follow-up period. While some of them previously had high disease activity, this group also included about 9 percent of those who started the study with mild-to-moderate disease activity.

Additionally, 8 percent of patients died during the follow-up period, and “each one-unit adjusted mean SELENA-SLEDAI increase in the observation period was significantly associated with a 22 percent increased risk of death in the follow-up period.”

While increases in disease activity are clearly important, medication use may have also played a role: Patients who had used hydroxychloroquine during the observation period were 54 percent less likely to die during the follow-up period, whereas those who were using prescription NSAIDs during the observation period were 66 percent more likely to later develop cardiovascular damage. NSAIDs were often associated with high blood pressure.

“In summary, our findings corroborate other published data that demonstrated that cumulative SLE disease activity over time impacted risk of developing organ damage and was associated with an increased risk of death,” the authors wrote.

They noted that doctors providing routine patient care often consider minimal fluctuations in disease activity to be okay, but that this study suggests that even small increases may be dangerous.

Because having an autoimmune disorder increases the risk of cardiovascular problems in general — as does using common medications like NSAIDs — making heart health a priority is crucial. In addition to closely monitoring lupus disease activity, patients ought to receive throughout cardiovascular risk assessments.

Want to Contribute to Arthritis Research? Here’s a Simple Way

If you are diagnosed with arthritis or another 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. Learn more and sign up here.

Hill DD, et al. Impact of systemic lupus erythematosus disease activity, hydroxychloroquine and NSAID on the risk of subsequent organ system damage and death: analysis in a single US medical center. Lupus Science and Medicine. March 2021; doi: https://doi.org/10.1136/lupus-2020-000446.

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