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“It is estimated that 9 out of every 10 people with lupus are women.”

Systemic lupus erythematosus (SLE) is a life-long autoimmune disease that typically presents with painful, swollen joints, but can affect various organs, including the digestive system. The most prevalent gastrointestinal symptoms are non-specific and include nausea, vomiting, anorexia, and abdominal pain. Abdominal pain can present acutely, and its underlying causes can include inflammation of blood vessels, gastroenteritis and pancreatitis.

The CDC National Lupus Registry estimates that over 200,000 Americans have SLE, with about 90% being women. When SLE affects the nervous system, it’s called neuropsychiatric SLE (NPSLE). Diagnosing and managing NPSLE is challenging because the symptoms, like headaches and mood disorders, to severe ones like seizures and psychosis, can be subjective, and diagnosis is often delayed.

The INSPIRE study, led by Dr. Melanie Sloan at the Department of Public Health and Primary Care Unit, University of Cambridge, investigated the timing of neuropsychiatric symptoms in SLE, and if these symptoms could be early indicators of SLE onset or flares. The study used surveys and interviews to collect data from 676 SLE patients and 400 clinicians. Patients reported when they first experienced each neuropsychiatric symptom and when their SLE symptoms started. The analysis included both statistics and detailed interview responses.

“61% of SLE patients who experienced hallucinations reported increasingly disrupted dreaming sleep, often nightmares, preceding their hallucinations.”

The study found that contrary to common belief, many neuropsychiatric symptoms appeared more than a year after typical SLE symptoms. For example, 54% of patients who experienced hallucinations reported them more than a year after their SLE symptoms began. Disrupted dreaming and nightmares were noted as early indicators of flares in some patients, with 61% of those experiencing hallucinations reporting an increase in nightmares before the hallucinations.

The results suggest that neuropsychiatric symptoms can happen at any stage of SLE, not just at the onset. This means clinicians should consider the timing of these symptoms in relation to SLE onset rather than just relying on the diagnosis time. Recognizing and monitoring early neuropsychiatric symptoms, like disrupted dreaming and nightmares, could help in the early identification and treatment of SLE flares, potentially improving patient outcomes.

“Studies show that SLE patients may have an altered gut microbiome.”

Moreover, studies show that SLE patients may have an altered gut microbiome, meaning changes in the normal composition of bacteria in their intestines. They tend to have a less diverse gut microbiome (dysbiosis), with fewer types of bacteria​. Beneficial bacteria often are reduced, while potentially harmful bacteria increase​. However, most studies had limitations, including a small sample size and imbalances in male/female distribution. Studies in mouse models of lupus show that demonstrated an increased gut permeability (“leaky gut”) allowing bacterial components to enter the gut-based immune system and the systemic circulation. As in other diseases the increased gut permeability results in the activation of the immune system, worsening the lupus symptoms. More research is needed to fully understand the relationship between SLE and the gut microbiome.

The findings of Dr. Melanie Sloan and colleagues are similar to those in other neurological and psychiatric disorders, like multiple sclerosis and Parkinson’s disease, where early neuropsychiatric symptoms often appear before more typical disease signs. The study emphasizes the need for clinicians to pay attention to the timing of neuropsychiatric symptoms in SLE and work closely with patients to monitor their symptom progression. Considering the involvement of the gut microbiome, dietary interventions aimed at restoring a normal gut microbiome may be considered in addition to reduce the impact of chronic symptoms on patients’ lives.