A groundbreaking study has revealed that many people are unaware of the neuropsychiatric symptoms associated with autoimmune diseases such as lupus.
A groundbreaking study has revealed that many people are unaware of the neuropsychiatric symptoms associated with autoimmune diseases such as lupus. Increased occurrences of nightmares and hallucinations can signal the onset of these diseases and act as early indicators of potential flare-ups.
This crucial finding comes from an international team of researchers from institutions including the University of Cambridge, King’s College London, and UC Davis School of Medicine. The study was published in eClinicalMedicine, a journal by The Lancet.
James Alan Bourgeois, a co-author of the study and a professor in the UC Davis Department of Psychiatry and Behavioral Sciences, highlighted the significance of these findings. “Many people don’t know that neuropsychiatric symptoms, including confusion, hallucinations, and vivid nightmares, can be part of autoimmune diseases like lupus,” Bourgeois said. “If someone presents with new psychotic symptoms and has other autoimmune symptoms and a family history of autoimmune disease, a provider should evaluate them for lupus before assuming a primary psychotic disorder.”
Melanie Sloan, a researcher at the University of Cambridge and the lead author of the paper, emphasized the need for open communication between clinicians and patients about these symptoms. “It’s important that clinicians talk to their patients about these types of symptoms and document each patient’s progression of symptoms,” Sloan stated. “Patients often recognize which symptoms indicate a flare-up, but there is reluctance to discuss mental health and neurological symptoms, especially if there’s a lack of awareness that these can be part of autoimmune diseases.”
Lupus, or systemic lupus erythematosus (SLE), is an autoimmune inflammatory disease that can affect various organs, including the brain. The Lupus Foundation of America estimates that approximately 1.5 million people in the U.S. and 5 million globally are affected by lupus, with a significant majority being individuals designated female at birth.
The study involved surveying 676 lupus patients and 400 clinicians. Additionally, the researchers conducted detailed interviews with 69 individuals living with systemic autoimmune rheumatic diseases, including lupus, and 50 clinicians.
Patients were questioned about the timing of 29 neuropsychiatric symptoms, such as depression, hallucinations, and loss of balance, and whether they could identify the order of these symptoms during disease flare-ups.
The research uncovered that disrupted dream sleep was a common symptom, reported by three in five patients, with one-third experiencing this symptom more than a year before the onset of lupus. Furthermore, nearly one in four patients reported hallucinations, with 85% experiencing these symptoms around the onset of the disease or later.
The interviews revealed that three in five lupus patients and one in three with other rheumatology-related conditions reported increasingly disrupted dreaming sleep just before their hallucinations. These nightmares were often vivid and distressing, involving themes of being attacked, trapped, crushed, or falling.
Interestingly, the study found that referring to hallucinations as “daymares” often helped patients understand and discuss their symptoms more comfortably, reducing the stigma and fear associated with these experiences. Despite this, patients were often reluctant to share their experiences of hallucinations, and many specialists had not considered nightmares and hallucinations as related to disease flares.
David D’Cruz, a professor at King’s College London and senior author of the study, commented on the significance of these findings. “For many years, I have discussed nightmares with my lupus patients and thought that there was a link with their disease activity,” D’Cruz said.
“This research provides evidence of this, and we are strongly encouraging more doctors to ask about nightmares and other neuropsychiatric symptoms to help detect disease flares earlier.”
The importance of recognizing these symptoms was underscored by reports that some patients had been misdiagnosed or hospitalized for psychotic episodes or suicidal ideation, which were later identified as early signs of autoimmune disease.
The study underscores the need for increased awareness among both patients and healthcare providers regarding the neuropsychiatric symptoms of autoimmune diseases like lupus, potentially leading to earlier and more accurate diagnoses. The research was funded by The Lupus Trust, a U.K.-registered charity.