The researchers argue that there needs to be greater recognition that these types of mental health and neurological symptoms can act as an early warning sign that an individual is approaching a ‘flare’, where their disease worsens for a period.

In a study published today in eClinicalMedicine, researchers surveyed 676 people living with lupus and 400 clinicians, as well as carrying out detailed interviews with 69 people living with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians. Lupus is an autoimmune inflammatory disease known for its effect on many organs including the brain.

In the study, the team also asked patients about the timing of 29 neurological and mental health symptoms (such as depression, hallucinations and loss of balance). In interviews, patients were also asked if they could list the order that symptoms usually occurred when their disease was flaring.

One of the more common symptoms reported was disrupted dream sleep, experienced by three in five patients, a third of whom reported this symptom appearing over a year before onset of lupus disease.

Just under one in four patients reported hallucinations, though for 85% of these the symptom did not appear until around the onset of disease or later. When the researchers interviewed the patients, however, they found that three in five lupus patients and one in three with other rheumatology-related conditions reported increasingly disrupted dreaming sleep — usually vivid and distressing nightmares — just before their hallucinations. These nightmares were often vivid and distressing, involving being attacked, trapped, crushed, or falling.

One patient from Ireland described their nightmares as: “Horrific, like murders, like skin coming off people, horrific…I think it’s like when I’m overwhelmed which could be the lupus being bad…So I think the more stress my body is under then the more vivid and bad the dreaming would be.”

The study interviewers found that using the term ‘daymares’ to talk about hallucinations often led to a ‘lightbulb’ moment for patients, and they felt that it was a less frightening and stigmatised word.

A patient from England said: “[When] you said that word daymare and as soon as you said that it just made sense, it’s like not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting awake in the garden…I see different things, it’s like I come out of it and it’s like when you wake up and you can’t remember your dream and you’re there but you’re not there… it’s like feeling really disorientated, the nearest thing I can think of is that I feel like I’m Alice in Wonderland.”

Patients experiencing hallucinations were reluctant to share their experiences, and many specialists said they had never considered nightmares and hallucinations as being related to disease flares. Most said they would talk to their patients about nightmares and hallucinations in future, agreeing that recognising these early flare symptoms may provide an ‘early warning system’ enabling them to improve care and even reduce clinic times by averting flares at any earlier stage.

Lead author Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: “It’s important that clinicians talk to their patients about these types of symptoms and spend time writing down each patient’s individual progression of symptoms. Patients often know which symptoms are a bad sign that their disease is about to flare, but both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realise that these can be a part of autoimmune diseases.”

Senior study author Professor David D’Cruz from Kings College London said: “For many years, I have discussed nightmares with my lupus patients and thought that there was a link with their disease activity. This research provides evidence of this, and we are strongly encouraging more doctors to ask about nightmares and other neuropsychiatric symptoms — thought to be unusual, but actually very common in systemic autoimmunity — to help us detect disease flares earlier.”

The importance of recognising these symptoms was highlighted by reports that some patients had initially been misdiagnosed or even hospitalised with a psychotic episode and/or suicidal ideation, which was only later found to be the first sign of their autoimmune disease.

One patient from Scotland said: “At 18 I was diagnosed with borderline personality disorder, and then 6 months later with lupus at 19, so it’s all very close together and it was strange that when my [borderline personality disorder] got under control and my lupus got under control was within 6 months.”

A nurse from Scotland said: “I’ve seen them admitted for an episode of psychosis and the lupus isn’t screened for until someone says ‘oh I wonder if it might be lupus’…but it was several months and very difficult… especially with young women and it’s learning more that that is how lupus affects some people and it’s not anti-psychotic drugs they needed, it’s like a lot of steroids.”

Professor Guy Leschziner, a 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 may signify changes in physical, neurological and mental health, and can sometimes be early indicators of disease. However, this is the first evidence that nightmares may also help us monitor such a serious autoimmune condition like lupus, and is an important prompt to patients and clinicians alike that sleep symptoms may tell us about impending relapse.”

The research was funded by The Lupus Trust and is part of the INSPIRE project (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences).