I took the new lymphoedema drug and my leg swelling went down by a third. After years of wearing compression stockings, this daily pill finally worked. Here’s what you need to know about the first-of-its-kind medication
It is a poorly understood condition that causes debilitating and distressing swelling in the arms or legs.
Lymphoedema occurs when fluid that would normally drain away through the body’s lymphatic system builds up in the limbs, causing them to bloat – sometimes dramatically.
It is estimated to affect more than 400,000 people in the UK and there is no cure or even treatments that can ease the symptoms.
Now researchers have developed a first-of-its-kind daily pill that could provide significant relief to lymphoedema patients.
In a study at Stanford Medicine in California, sufferers who took the anti-inflammatory drug acebilustat once a day for a year experienced a reduction in swelling with improvements in skin thickness, scarring and quality of life.
Acebilustat is not approved for lymphoedema treatment in the UK or US but researchers hope to launch a major clinical trial as part of efforts to secure regulatory approval.
Lauren Scheidegger has lived with lymphoedema in her right leg since birth – but now a new daily pill has decreased the size of her affected leg by a third in a year
Lauren began to feel an improvement after about three months on the study drug and noticed more changes by around six months
One participant who experienced a marked difference is 34-year-old Lauren Scheidegger, from Texas, who has lived with lymphoedema in her right leg since birth.
The condition made movement difficult, stiffened her joints and made exercise harder.
Lauren began to feel an improvement after about three months on the study drug and noticed more changes by around six months.
She estimated the size of her affected leg decreased by a third over the year. ‘I could start seeing the ligaments and veins on my foot and the definition around my ankle and knee,’ she says.
Lauren’s usual treatment included heavy compression garments as well as regular therapy involving manual lymphatic drainage (MLD) – a specialised type of massage that uses light pressure and rhythmic strokes to move fluid away from swollen areas.
She says the heaviness and swelling would build up throughout the day and that taking acebilustat made it easier to move, adding: ‘The drug seemed to take off that overload.’ But after she stopped using the drug at the end of the trial, the swelling started to return.
Lauren’s usual treatment included heavy compression garments as well as regular therapy involving manual lymphatic drainage – a specialised type of massage
The condition previously made movement more difficult, stiffened her joints and made exercise harder
However, in some cases, The Mail on Sunday can reveal that users say the benefits persisted after they stopped taking the medication.
This was the case for Debon Cochrane, who developed lymphoedema after surgery in 1999 for ovarian cancer.
She says that before taking the drug, managing the condition required wearing compression garments as well as MLD massage. ‘Compression garments almost cause as much problem as the condition,’ says 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.’
Debon explains it took about nine months before major changes became noticeable – but by the end of the trial 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.
Lead 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.’
