Summary: A new study suggests that an increase in nightmares and hallucinations may signal the onset of autoimmune diseases like lupus. The research highlights the need for better recognition of these symptoms as early indicators of disease flares.
The results show that dream sleep disturbances and hallucinations often precede disease worsening, providing potential to improve the early detection and management of autoimmune diseases.
Highlights:
- First indicators: Nightmares and hallucinations can precede flare-ups of autoimmune diseases.
- Research base: The study included surveys and interviews with lupus patients and clinicians.
- Clinical implications: Recognizing these symptoms can lead to earlier detection and better management of autoimmune diseases.
Source: King’s College London
An increase in nightmares and hallucinations – or “nightmares” – could herald the onset of autoimmune diseases such as lupus, says an international team led by researchers from the University of Cambridge and King’s College London.
The study, published today in eMedicineClinicalargues that there needs to be greater recognition that these types of mental health and neurological symptoms can act as a warning sign that an individual is approaching a “flare”, in which their illness worsens for some time.
The research surveyed 676 people living with lupus and 400 clinicians, as well as detailed interviews with 69 people living with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians.
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.
“It is important that clinicians talk to their patients about these types of symptoms and take the time to note the individual progression of each patient’s symptoms.
“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 symptoms, particularly if they don’t realize that these may be part of autoimmune diseases,” said Dr Melanie Sloan, Department of Public Health and Primary Care, University of Cambridge (lead author).
One of the most commonly reported symptoms was disturbed dream sleep, experienced by three out of five patients, a third of whom reported these symptoms 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.
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’s like you feel really disoriented, the closest thing I can think of is that I feel like Alice in Wonderland.
“For many years, I discussed nightmares with my lupus patients and thought there was a link 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 more disease outbreaks early,” said Professor David D. Cruz, Kings College London (lead author of the study).
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.
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.
“We have long known that alterations in dreaming can signify changes in physical, neurological and mental health, and can sometimes be early indicators of illness.
“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 warn us of imminent relapse,” said study author Professor Guy Leschziner, a neurologist at Guys and St Thomas Hospital, and author of The Secret World of Sleep
Funding: 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).
About this autoimmune disease research news
Author: Melanie Sloan
Source: King’s College London
Contact: Mélanie Sloan – King’s College London
Picture: Image is credited to Neuroscience News
Original research: Free access.
“Neuropsychiatric prodromes and symptom timing in relation to disease onset and/or flares in SLE: results from the international mixed-methods INSPIRE study” by Melanie Sloan et al. eMedicineClinical
Abstract
Neuropsychiatric prodromes and timing of symptoms in relation to disease onset and/or SLE flares: results from the international mixed-methods INSPIRE study
Background
Neuropsychiatric symptoms of SLE and other systemic autoimmune rheumatic diseases (SARDS) are difficult to diagnose, attribute, and manage. We investigated the timing of onset of a wide range of neuropsychiatric (NP) symptoms in relation to the timing of SLE onset. Furthermore, we examined whether NP symptoms could be a prodrome for the onset of SARDs and subsequent flares.
Methods
We collected patient reports on the timing of their first episode of 29 NP symptoms relative to the onset of non-NP SLE symptoms. Surveys (n = 676 lupus patients and n = 400 clinicians) and interviews (n = 50 clinicians; and n = 69 SARDS patients, including 27 lupus patients) were conducted from 2022 to 2023 and analyzed at the using mixed methods.
Results
The majority of NP symptoms did not first manifest at the time of SLE onset, contrary to the prevailing view among many rheumatology participants and the literature. For example, among patients who experienced hallucinations, 54% reported a first presentation > 1 year after illness onset. Patient interviews also revealed that a range of NP symptoms may be a prodrome to the onset and subsequent flares of SLE/SARDs, including symptoms not represented in existing classification criteria.
Evidence of a possible prodromal syndrome has been obtained in patients who experienced hallucinations. Of these, 61% (SLED) and 34% (other SARDs) reported increasingly disturbed dream sleep (usually nightmares) before their hallucinations. In-depth interviews revealed that symptom progression during relapses had a high degree of variation between patients, while symptom progression was often similar within an individual patient’s recurrent relapses.
Interpretation
Neuropsychiatric symptoms can appear at any stage of the course of SLE. Allocation decisions should evaluate the timing of PN symptoms relative to the time of onset of SLE/SARDs symptoms rather than the time of diagnosis due to frequent delays in diagnosis. Better recognition of prodromal/early NP symptoms indicative of impending SLE flares (and potentially other SARDs flares) could allow for more rapid identification and treatment of flares.
Funding
The Lupus Trust.