Study Reveals Early Neurological and Mental Health Symptoms of Lupus Flare-Ups

In a recent study, published in eClinicalMedicine, a team of researchers from the University of Cambridge and King’s College London, both in the United Kingdom, surveyed 676 individuals with lupus and 400 clinicians who provided care for people with this condition. They also conducted in-depth interviews with 69 individuals living with systemic autoimmune rheumatic diseases including lupus and 50 clinicians. 

Lupus is an autoimmune inflammatory disease that affects multiple organs. The study asked patients about the timing of 29 neurological and mental health symptoms, such as depression, hallucinations, and loss of balance. 

During interviews, the participants were also asked to list the typical order in which their symptoms appeared during a flare-up. Just under one in four people reported experiencing hallucinations, but for 85% of them, this symptom did not manifest until around the onset of the disease or later. 

Researchers found that there was a lot of similarity in the symptoms that each person experienced just before the start of their flare-ups for each subsequent flare-up they had. A participant from Ireland described their nightmares as horrific and graphic, involving scenes such as murders and people’s skin coming off. 

A participant from England explained that the term “daymare” immediately made sense to them. They described it as not necessarily scary but similar to having a dream while being awake, such as sitting in the garden and seeing different things. 

Patients experiencing hallucinations were hesitant to discuss them, and many specialists had not previously considered a link between nightmares, hallucinations and disease flare-ups. So, the patients don’t think to mention that they have been having nightmares or their hands go numb, or they feel dizzy, or they have a sudden change in mood, or any combination of the many possible symptoms, and the doctors don’t think to ask. 

These incidents were later identified as early indicators of their autoimmune disease. Most specialists agreed to discuss these symptoms with their patients in the future, recognizing that identifying these early signs of flare-ups could serve as an “early warning system.” 

Researchers said that they strongly encourage patients and doctors to work together to see if there is a similar progression of symptoms for that patient in each flare-up. Then they both will be able to take action when the pattern starts again which should lead to earlier detection and therefore earlier treatment. Lupus in particular can cause organ damage, including the brain, and even death in some cases, so earlier detection is vital. Given that the pathologic autoimmune changes of NPSLE are focal to the brain, it is important that the present study defined that NP signs and symptoms often precede either initial diagnosis or subsequent flare-ups of SLE. 

However, the occurrence of psychiatric features in individuals with other rheumatological signs, symptoms, and/or conditions may be of valuable consideration toward either establishing the differential diagnosis of (NP)SLE or clinically predicting flare-ups in those patients who have been diagnosed with the disease.