The antiphospholipid syndrome (Hughes' syndrome)

Written by Dr MY Karim, lecturer in immunology, St Thomas' Hospital and Dr GRV Hughes, consultant physician and rheumatologist, St Thomas' Hospital

Treatment of antiphospholipid syndrome
Because of the increased tendency to clot, the main aim of treatment is to 'thin' the blood, so that this tendency is reduced. This is usually achieved with a tablet called warfarin, which is an anticoagulant (literally anti-clotting). This is taken daily, and regular blood tests are required to ensure that the warfarin is thinning the blood to the required degree. This blood test is referred to as the INR (International Normalised Ratio). This test compares the tendency for the patient's blood to clot against a standard blood result. Warfarin treatment is given to patients who have antiphospholipid syndrome characterised by recurrent clots.

Patients with antiphospholipid syndrome who have recurrent miscarriages can also be treated, but not with warfarin as it has the potential to cause foetal abnormality if given during pregnancy. Treatment of such patients is with either aspirin, or another type of anticoagulant, heparin. Sometimes both are used.

Heparin needs to be given daily during pregnancy by injection under the skin. Patients are usually taught how to do this, and most manage without difficulty. It can also be given by nurses. Unlike warfarin, there are no blood tests usually required to monitor heparin treatment.

At present the recommended treatment is low dose aspirin, providing there are no contraindications.

Some patients have positive antiphospholipid antibody tests, but have never had a thrombosis or a miscarriage. Research into the best treatment for such patients is currently being carried out.

At present, the recommended treatment is low dose aspirin. Aspirin acts on platelets (small blood cells involved in forming clots) to reduce their stickiness, and hence reduces the ability of the blood to clot.

Living with antiphospholipid syndrome
If correctly treated, the patient's outlook is good. The risk of further clots both in arteries and veins is reduced in patients who receive treatment with warfarin. But the treatment needs to be long term or even lifelong, as there is a high risk of further clots in patients who stop warfarin treatment.

Patients should also reduce their risk of thrombosis from causes other than the antiphospholipid syndrome. They should stop smoking, make sure they are a healthy weight, and take regular exercise. The doctor will assess their other risk factors for thrombosis - by measuring their blood pressure to rule out hypertension, checking their glucose levels to rule out diabetes and measuring cholesterol levels.

Women who have suffered several miscarriages have subsequently had successful pregnancies. Treatments include aspirin, heparin, careful supervision by obstetricians and physicians, and regular scanning to check their baby's wellbeing.

Further information on antiphospholipid syndrome (Hughes' syndrome)
Website: www.hughes-syndrome.org. Helpline: 020 7188 8217

A patient booklet can be obtained from Lupus UK, 1 Eastern Road, Romford, Essex, RM1 3NH. Telephone: 01708 731251.

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