An umbrella model for SLEThe subtyping project manifested 3 years ago, following a roundtable discussion among Duke’s rheumatologists. Describing their most challenging patients, “it became clear that there were several unmet needs” among those with severe, life-threatening manifestations whose medications weren’t effective, Dr. Rogers said.
Physicians were seeing large numbers of patients that, on paper, seemed to have their flaring lupus nephritis or arthritis under control. Their serology labs were improving, yet they continued to experience fatigue, poor sleep, diffused and widespread pain not evident on the physical exam, brain fog or cognitive dysfunction, and anxiety and depression.
One of the most difficult aspects of caring for lupus patients is managing fatigue, Dr. Rogers said. It significantly impacts quality of life, but not much is understood about its etiopathogenesis.
“Fatigue has been shown to be associated with numerous factors, including disease activity, but it often persists during remission and has a clear relationship with other factors such as perceived stress, depression, poor sleep, and mood disorders. We don’t have biomarkers to identify inflammatory-related fatigue or to guide specific therapy,” she added.
Questioning the underlying causes of these symptoms, how they differentiated from one another, and if they were, in fact, inflammatory symptoms, led to the idea of characterizing subtypes of lupus.
The model is unique in that it incorporates these symptoms under the larger umbrella of SLE symptoms, Dr. Rogers said. “Patients do not view or feel these symptoms in isolation. These symptoms often presented at the same time as their lupus, as such patients identify them as part of their disease. Given the interwoven nature of these symptoms, it may not be possible to dissect them and treat them discretely.”
The intent was to have a holistic approach to improve communication, patient education, and symptom management. “Furthermore, by incorporating type 2 symptoms into our disease model, we hope this will ultimately lead to a better understanding of the underlying mechanisms driving these symptoms and therapies targeting these symptoms,” Dr. Rogers noted.
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