Lupus patients highlight foot and ankle issues


The results of a survey completed by patients with the autoimmune condition systemic lupus erythematosus (SLE) are being used to improve guidelines on maintaining foot and ankle health.

Researchers from the NIHR Wellcome Trust Southampton Clinical Research Facility have published results in the journal Lupus showing for the first time an unmet need for improved foot heath advice and care for patients with systemic lupus erythematosus (SLE), also known as lupus.

Lupus and foot health

In the UK approximately 25,000 people have a diagnosis of lupus. It is a complex, long-term disease in which a person’s immune system attacks their own body, and is diagnosed about nine times more frequently in women than men.

The most common symptoms include extreme tiredness, joint pain and swelling, and distinctive rashes on the face, wrists and hands, such as the ‘butterfly’ rash that spreads out as two wings across the cheeks joined at the bridge of the nose.

However, it can also specifically affect circulation in the feet and ankles, with symptoms such as Raynaud's phenomenon – a condition that limits the blood supply to the feet when it is cold – and ankle swelling. If left untreated, this can result in loss of sensation, amputation and death.

Listening to patients

The researchers developed a national survey, together with patients, which they distributed to lupus patients at six NHS Rheumatology departments, and analysed the 182 completed.

They wanted to know how many patients had experienced problems with their feet related to their condition, whether or not they had received any treatment, and any changes they would like to see in the care of their foot-related health problems.

Improving treatment

They identified a particular need for treating issues related to circulation, with 85% of respondents reporting having experienced symptoms related to impaired blood flow to their feet, but only 18% receiving treatment.

Other problems included infections, as well as a quarter of respondents reporting they had a fall because of altered sensation in their feet. Despite this, less than a third reported being asked about their foot health by their doctor, and even less being offered a treatment, with the treatments offered varying greatly.

This survey therefore highlights a need for greater awareness among doctors of the potential hazards of poor foot health in patients with lupus, as well as the available treatments, and will help inform guidance to improve care across the country.

Posted on Monday 10 October 2016