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An international research team led by the University of Cambridge and King’s College London has found that an increase in nightmares and hallucinations, or ‘daymares’, could indicate the onset of autoimmune diseases such as lupus. These mental health and neurological symptoms can serve as early warning signs that a disease flare is approaching, where the condition worsens for a period. The team surveyed 676 people living with lupus and 400 clinicians, as well as conducting detailed interviews with individuals with systemic autoimmune rheumatic diseases. Lupus is known for its impact on various organs, including the brain.

The study involved asking patients about the timing of 29 neurological and mental health symptoms and interviewing individuals to list the order in which symptoms usually occurred during a disease flare. Common symptoms reported included disrupted dream sleep, experienced by three in five patients, with a third reporting this symptom appearing over a year before the onset of lupus. Nearly one in four patients reported hallucinations, with most of these symptoms not appearing until around the disease onset or later. However, three in five lupus patients and one in three with other rheumatology-related conditions reported increasingly disrupted dreaming sleep before experiencing hallucinations.

Patients described vivid and distressing nightmares involving scenarios such as being attacked, trapped, crushed, or falling. The term ‘daymares’ was introduced by researchers to describe hallucinations, leading to a more positive and less stigmatised perception of the symptoms among patients. Clinicians expressed surprise at the correlation between nightmares and disease flares and agreed to begin discussing these symptoms with their patients. Recognizing these early flare symptoms may help improve patient care, potentially averting flares at an earlier stage and reducing clinic times.

Lead author Dr. Melanie Sloan emphasized the importance of clinicians discussing these types of symptoms with patients and documenting each individual’s symptom progression. Many patients and doctors may be hesitant to talk about mental health and neurological symptoms related to autoimmune diseases. Senior author Professor David D’Cruz encouraged doctors to ask about nightmares and other neuropsychiatric symptoms as they can be early indicators of disease activity, aiding in early detection of flares. Some patients were initially misdiagnosed or hospitalized with psychiatric symptoms before their autoimmune disease was identified.

Reports included cases where patients were diagnosed with conditions like borderline personality disorder before being diagnosed with lupus, highlighting the need for increased awareness of how autoimmune diseases can manifest. Neurologist Professor Guy Leschziner noted that changes in dreaming can indicate alterations in physical, neurological, and mental health and may be early signs of disease. This study provides evidence that nightmares can help monitor autoimmune conditions like lupus, emphasizing the importance of paying attention to sleep symptoms. The research was funded by The Lupus Trust and is part of the INSPIRE project focusing on neuropsychiatric symptoms in rheumatology patient experiences.

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