Lymphoedema is a poorly understood condition that can cause painful, debilitating swelling in the arms or legs.
The condition develops when fluid that would usually be carried away by the lymphatic system accumulates in the limbs, sometimes causing dramatic enlargement.
More than 400,000 people in the UK are estimated to live with lymphoedema. There is currently no cure, and treatment options for easing its symptoms remain limited.
Now, researchers have developed a first-of-its-kind daily tablet that could offer meaningful relief for people with the condition.
In a Stanford Medicine study in California, patients who took the anti-inflammatory drug acebilustat once a day for 12 months experienced less swelling, alongside improvements in skin thickness, scarring and overall quality of life.
Acebilustat is not currently approved to treat lymphoedema in either the UK or the US. However, the researchers hope to begin a large clinical trial as they work towards potential regulatory approval.
Among those reporting a notable improvement was 34-year-old Lauren Scheidegger, from Texas, who has had lymphoedema in her right leg since birth.
The swelling made it harder for her to move, caused stiffness in her joints and limited her ability to exercise.
Lauren Scheidegger has lived with lymphoedema in her right leg since birth, but a new daily tablet reduced the size of the affected limb by a third within a year
Lauren noticed the first signs of improvement after about three months on the study drug, with further changes becoming apparent at around six months
Lauren said she began noticing a difference after roughly three months on the trial medication, followed by more visible improvement at about the six-month mark.
She estimated that her affected leg shrank by a third over the course of the year. “I could start seeing the ligaments and veins on my foot and the definition around my ankle and knee,” she said.
Before joining the study, Lauren relied on heavy compression garments and regular manual lymphatic drainage, or MLD. The specialist massage uses gentle pressure and rhythmic movements to help shift fluid away from swollen areas.
She said the swelling and feeling of heaviness usually intensified as the day went on. Acebilustat made movement easier, she added, saying: “The drug seemed to take off that overload.” After she stopped taking it when the trial ended, however, the swelling began to return.
In some cases, though, The Mail on Sunday can reveal that patients believe the benefits continued even after they discontinued the medication.
One of them is Debon Cochrane, who developed lymphoedema following surgery for ovarian cancer in 1999.
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Before taking acebilustat, she managed the condition with compression garments and MLD massage. “Compression garments almost cause as much problem as the condition,” said Debon, 62, a nurse from California. “They put a lot of pressure in places where there shouldn’t be pressure, so I have issues with bunions and ingrown toenails.”
Lauren previously relied on heavy compression garments and regular manual lymphatic drainage, a specialised form of massage
The condition had made movement more difficult, left her joints stiff and made exercise harder
Debon said it took around nine months for substantial changes to emerge. By the end of the trial, she estimated that her symptoms had improved by about 20 per cent.
‘The skin got smoother and more supple. You could feel the texture changing,’ she says.
A year and a half after stopping acebilustat, Debon has had no progression of her symptoms.
The tablet is thought to work by blocking a molecule called leukotriene B4, or LTB4, which is found at elevated levels in people with lymphoedema and is believed to drive the inflammation.
In an early stage trial, researchers treated 23 patients with lymphoedema affecting their legs. After 12 months, limb swelling fell by around 5 per cent – equivalent to one litre of fluid.
Participants also reported improvements in limb heaviness, tissue softness, self-confidence and overall quality of life.
Researchers found no major safety concerns.
Senior study author Dr Stanley Rockson says the findings suggested drug therapies could eventually reduce patients’ reliance on self-management techniques.
His team has already launched a larger trial using acebilustat in patients with lymphoedema affecting their arms.
However, the British Lymphology Society cautioned that the first trial was small and lacked a control group – where patients are given a placebo drug for comparison – making it difficult to know how much of the improvement was due to the drug itself.
Carol-Ann Barrett, a lymphoedema specialist practitioner for professional association MLD UK, says: ‘A further larger randomised placebo-controlled trial would provide stronger evidence.’
However, Professor Dominic Furniss, from the British Association of Plastic, Reconstructive and Aesthetic Surgeons, says: ‘This study shows some promise that we may have a desperately needed drug treatment for lymphoedema in future.’