The first warning signs of an autoimmune disease during sleep

Nightmares and hallucinations may be early signs of autoimmune diseases like lupus, potentially improving early diagnosis and treatment, according to a new study.

An increase in nightmares and hallucinations – or “nightmares” – could indicate the start of autoimmune diseases such as lupus. This is according to an international team led by researchers from the University of Cambridge and King’s College London.

They emphasize the importance of recognizing these mental health and neurological symptoms as warning signs of an impending “flare,” a phase in which the disease temporarily intensifies.

Lupus Symptoms and Mental Health Study

In a study published in eMedicineClinical Today (May 20), researchers surveyed 676 people living with lupus and 400 clinicians, and also conducted in-depth interviews with 69 people living with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians . Lupus is an inflammatory autoimmune disease known for its effects on many organs, including the brain.

In the study, the team also asked patients about the timing of 29 neurological and mental symptoms (such as depression, hallucinations, and loss of balance). During the interviews, patients were also asked if they could list the order in which symptoms usually appeared when their illness flared up.

Patterns of nightmares and hallucinations

One of the most commonly reported symptoms was disturbed dream sleep, experienced by three out of five patients, a third of whom reported this symptom appearing more than a year before the onset of lupus disease.

Just under one in four patients reported hallucinations, although for 85% of them, symptoms did not appear until early in the illness or later. However, when researchers surveyed patients, they found that three in five patients with lupus and one in three with other rheumatology-related conditions reported increasingly disrupted dream sleep – usually vivid nightmares and painful – just before their hallucinations. These nightmares were often vivid and distressing, involving being attacked, trapped, crushed, or falling.

Patient Perspectives and Terminology

An Irish patient described his nightmares as follows: “Horrible, like murder, like skin coming off people, horrible… I think it’s like when I’m submerged, which might be because the lupus is serious… So I think the more stressed my body is. then the more vivid and bad the dream would be.

Study investigators found that using the term “nightmares” to talk about hallucinations often led to a “light bulb” moment for patients, and they felt it was a less frightening and stigmatized word .

A patient from England said: “(When) you say that word ‘nightmare’ and as soon as you say it made sense, it’s not necessarily scary, it’s like you had a dream and yet you stayed awake. the garden… I see different things, it’s like I’m coming out of it and it’s like when you wake up and you don’t remember your dream and you’re there but you’re not there… it It’s like you feel really disoriented, the closest What I think about is that I feel like Alice in Wonderland.

Clinical implications and future directions

Patients suffering from hallucinations were reluctant to share their experiences, and many specialists said they had never considered nightmares and hallucinations to be linked to disease flares. Most said they would talk to their patients about nightmares and hallucinations in the future, agreeing that recognizing these early flare symptoms can provide an “early warning system” allowing them to improve care and even reduce clinical delays by avoiding flare-ups at an earlier stage.

Lead author Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: “It is important that clinicians talk to their patients about these types of symptoms and take the time to write down the individual progression of symptoms for each patient. Patients often know which symptoms are a bad sign that their illness is about to get worse, but patients and doctors may be reluctant to discuss mental health and neurological problems, particularly if they do not realize that these can be part of autoimmune diseases. »

Evidence linking neuropsychiatric symptoms and disease activity

Lead author of the study, Professor David D’Cruz of Kings College London, said: “For many years I discussed nightmares with my lupus patients and thought it was linked to their disease activity. This research provides evidence of this, and we strongly encourage more doctors to ask about nightmares and other neuropsychiatric symptoms – considered unusual, but actually very common in systemic autoimmunity – to help us detect earlier disease outbreaks.

The importance of recognizing these symptoms was highlighted by reports that some patients were initially misdiagnosed or even hospitalized with a psychotic episode and/or suicidal ideation, which only later revealed themselves as the first sign of their autoimmune disease.

A Scottish patient said: “At 18 I was diagnosed with borderline personality disorder, then 6 months later I was diagnosed with lupus at 19. So it’s all very close and it was strange that when my (borderline personality disorder) came under control and my lupus was brought under control within 6 months.

A Scottish nurse said: “I’ve seen them admitted for an episode of psychosis and lupus isn’t screened for until someone says ‘oh, I wonder if it could be lupus’… but it took several months and it was very difficult… especially with young women and we learn more that this is how lupus affects some people and it’s not antipsychotic medication that they need, it’s like lots of steroids.

Final remarks on sleep and autoimmune diseases

Professor Guy Leschziner, study author and neurologist at Guys and St Thomas Hospital, and author of The Secret World of Sleep, said: “We have long been aware that alterations in dreaming can mean changes in physical, neurological and mental health. and can sometimes be early indicators of disease. However, this is the first evidence that nightmares can also help us monitor an autoimmune disease as serious as lupus, and it is an important indication for patients and clinicians that sleep symptoms can inform us of ‘an imminent relapse.

Reference: “Neuropsychiatric prodromes and timing of symptoms in relation to disease onset and/or relapses in SLE: results from the international mixed-methods INSPIRE study” May 20, 2024, EClinicMedicine.
DOI: 10.1016/j.eclinm.2024.102634

The research was funded by The Lupus Trust and is part of the INSPIRE project (Iinvestigate NOTeuropsychiatric Ssymptom P.the relevance and Ito have an impact on A.hematology patient Eexperiences).