Advances in SLE management

Irish Society for Rheumatology, Spring Meeting, Sligo Park Hotel, 10-11 April 2025

Systemic lupus erythematosus (SLE) remains a “tricky” disease, with much still to learn about its causes and the best manner of diagnosis, according to Prof David D’Cruz, Professor of Rheumatology, Guy’s and St Thomas’ Hospital, London, UK.

However, according to Prof D’Cruz, significant progress has been and continues to be made in managing this disease.

The good news, he told the 2025 Irish Society for Rheumatology Spring Meeting, is that there has been a dramatic decline in mortality since 1970, as demonstrated by supporting data. In the area of lupus nephritis, major advances have been achieved, including earlier diagnosis through urine testing, dipstick analysis, and blood pressure monitoring; improved access to care; the introduction of novel biologics; and the use of lower steroid doses. However, he noted that many challenges remain, including difficulties in flare prevention, achieving optimal remission, and the ongoing lack of reliable non-invasive biomarkers

A major challenge in SLE – shared by many chronic diseases – is poor medication adherence, Prof D’Cruz emphasised, citing data indicating non-adherence rates of 45-64 per cent in patients with SLE.

He suggested that clinicians often underestimate the extent of medication non-adherence, which can significantly distort the assessment of treatment effectiveness.

Prof D’Cruz advised measuring the patient’s adherence independently at each check-up, as many patients state they are taking their medication when they are not and then question why they are symptomatic/not improving.

“This is a huge unmet need across all of medicine, not just in rheumatology,” he told the Medical Independent (MI). “There are many reasons why people don’t take their medications. For younger people, it can be denial about their disease and then others think they are doing really well so stop taking their medication. It is very complicated. I think the key is patient education, but you need a lot of resources for that.”

Prof D’Cruz noted that there remain no consensus diagnostic criteria for SLE, only classification criteria from the European League Against Rheumatism (EULAR) and the American College of Rheumatology, which were published in 2019.

Neuropsychiatric lupus remains “one of the most challenging” SLE manifestations to diagnose and characterise accurately, and there are currently no approved treatments, Prof D’Cruz said.

He acknowledged that the wide spectrum of neuropsychiatric symptoms and signs seen in patients with SLE makes a definitive diagnosis of neuropsychiatric lupus difficult – even in expert centres.

Attributing a specific psychiatric, neurological, or psychological symptom to lupus – rather than to a co-existing condition or medication such as corticosteroids – can be very difficult, Prof D’Cruz noted.

He added that most rheumatologists rarely inquire about psychotic symptoms. The frequency of neuropsychiatric symptoms in general is also significantly under-estimated by clinicians.

“For many years, I have heard lupus patients mention nightmares as part of their lupus flares, especially if they have neuropsychiatric lupus,” he said, before discussing his research in this area.

The data suggests that nightmares and other neuropsychiatric symptoms are much more commonly experienced by SLE patients compared to matched physically healthy subjects.

Prof D’Cruz said many patients describe frightening nightmares to him involving physical threats to them or their families, or alarming experiences such as relatives dying in car or aeroplane accidents or large objects hurtling towards them. He recommended asking patients suspected of having neuropsychiatric lupus about the quality of their sleep and then to ask about nightmares, daymares, and any visual, auditory, tactile or olfactory hallucinations.

“It [neuropsychiatric lupus] is underdiagnosed, under-treated, and often misdiagnosed. I think the key here is collaboration with neurologists, psychiatrists, and neuropsychiatrists, and just to listen to the patient as then they will give you the diagnosis,” he told MI.

Looking at lupus nephritis, which manifests in close to half of SLE patients and carries a mortality rate of up to 30 per cent at 10 years, Prof D’Cruz said recurrent flares are a strong predictive factor. In 2023, EULAR updated its recommendations for the management of SLE, making three specific suggestions for the management of lupus nephritis based on the most recent available treatments and placing strong emphasis on the treatment of active disease.

Concluding his talk, Prof D’Cruz said, while challenges remain, the future for SLE treatment is bright, with over 90 investigative agents for the disease currently in development.