Lupus & Nightmares

“For many years, I have heard lupus patients mention nightmares as part of their lupus flares, especially if they have neuropsychiatric lupus,” says David D’Cruz, MD, a world-renowned lupus specialist at Guy’s and St. Thomas National Health Service (NHS) Foundation Trust in London. The mixed methods Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences (INSPIRE) study has confirmed the observation.¹

Dr. D’Cruz believes the results reinforce the idea that listening carefully to patients and taking their symptoms seriously strengthen patient trust in the clinical team. Unfortunately, he says, neuropsychiatric lupus can be difficult to diagnose, largely because most rheumatologists don’t often ask about psychotic symptoms.

Neuropsychiatric Symptoms

An increasing body of evidence suggests that an episode of psychiatric illness, an infection or a stressful life event may induce immune dysregulation and, thus, precipitate the onset or flare of an autoimmune disease. A neuropsychiatric prodrome has been associated with many diseases, including multiple sclerosis, several dementia syndromes and Parkinson’s disease.

Dr. D’Cruz, Melanie Sloan, PhD, a researcher at the University of Cambridge in the U.K., and international colleagues, including patient partners, investigated this phenomenon. In early 2024, they published the results of their international mixed methods study.² The researchers designed their study to be a first step in exploring, discussing and including a greater range of neuropsychiatric symptoms associated with systemic autoimmune rheumatic diseases (SARDs) in research and clinics. They found that the self-reported lifetime prevalence of neuropsychiatric symptoms is significantly higher among patients with SARDs than among physically healthy controls.

The interviews captured in the study revealed that not only were the patient-reported prevalences of neuropsychiatric symptoms significantly higher than those estimated by most clinicians, but the patient data conflicted with research reporting nervous system involvement as being unusual in rheumatoid arthritis, rare in Sjögren’s disease and rare in systemic sclerosis.

Most research designed in the last century did not center on patient experience, Dr. Sloan explains. She and her colleagues concluded in their paper that a self-perpetuating cycle in rheumatology may exist in which neuropsychiatric symptoms are under-elicited in the clinic, under-identified in research and excluded from clinical trial outcomes, and consequently, they are rarely—or not—included in SARD criteria/guidelines. The new data are, thus, a step forward in remedying that situation, and the authors call for improved inter-specialty communication and greater patient involvement in SARD care and research.

Dr. Sloan and her co-authors expressed optimism that this change will happen because most of the clinicians interviewed for the study were highly motivated to improve SARD neuropsychiatric care.