UK clinicians are leading efforts to improve outcomes in lupus with the country’s first guideline on managing adults with the disease.

The British Society for Rheumatology guideline, published in Rheumatology is the first to make general recommendations about lupus management since a 2008 EULAR publication.

Lead author Professor Caroline Gordon, professor of rheumatology at the University of Birmingham, hoped the advice would improve quality of life for patients and survival rates.

In the UK, figures showed lupus patients die on average 25 years earlier than the mean for men and women.

“There’s definitely room for improvement … and to try and ensure that all patients live a more normal lifespan. Some do already but we would like it for all of them,” Professor Gordon told the limbic.

Among the key recommendations was the need to reduce reliance on steroids, Professor Gordon said.

“[Steroids] are life-saving in lupus, and it’s totally appropriate to use them when people present with very active disease,” she said.

“But it’s important the dose is reduced and if it can’t be easily reduced [that] other drugs are added in to make it easier to reduce the dose.”

Of the other available drugs, hydroxychloroquine had the most evidence, the least need for extra monitoring and the least side effects.

“[It] is really an anchor therapy for all patients. Then patients who don’t do well enough with that can have other things added on,” Professor Gordon said.

There had been a tendency not to offer hydroxychloroquine to patients presenting with devastating disease, but they should also have access to it as part of their treatment package, Professor Gordon stressed.

The guideline also made recommendations around diagnosis, stating patients should show relevant clinical features of lupus together with abnormal serology.

“You’ve got to have one of the autoantibodies associated with lupus or a low complement,” Professor Gordon said.

“We want the serology with the clinical features. We don’t want just clinical features [and] we don’t want just serology.”

The guideline also emphasized the importance of regular monitoring, suggesting clinic visits every four weeks for most patients with active disease gradually reducing to appointments every three months as the disease became controlled.

“Even if you stop the drugs because they have done very well, you’ve still got to monitor them to make sure the disease doesn’t come back and… for long-term complications,” Professor Gordon said.

“[Patients] don’t often die of lupus, at least not in the UK, but they can die of complications of the disease or its treatment and the complications include infections and heart attacks so we have to keep monitoring people.”