Education, Awareness, Support

What is Lupus?

Lupus, arguably the most severe and complex of the autoimmune diseases can sometimes 'overlap' with antiphospholipid syndrome (APS). Figures vary, but approximately 1 in 5 of all lupus patients have 'sticky blood' – indeed it was in a lupus clinic that the clinical details of patients with antiphospholipid syndrome (APS) were first defined, as was the sensitive blood test called "anti-cardiolipin antibodies".

Lupus itself mostly affects women aged 15-50. Its features include fatigue, aches and pains, and rashes. More seriously it can cause kidney and brain damage if not treated promptly.

It is very important to recognise the relationship between lupus and APS. Lupus patients do have a 1 in 5 risk of APS. However, patients with "primary" APS only very rarely go on to develop lupus.

Because of the frequency and importance of this condition, the next section is an extended review of the signs, symptoms and treatment of lupus.

Clinical Features

Lupus is a complex and unpredictable disease, which varies greatly among patients and has a significant impact on an individual's daily living and quality of life, with extreme fatigue and joint pain as the most commonly reported symptoms. With earlier diagnosis and treatment the outcomes for patients are markedly improved, although over half of patients report that they are unable to carry out their usual daily activities. On average this complex illness currently takes 6.4 years from the onset of the first symptom(s) to diagnose in the UK.

Lupus and ...

Lupus Diagnosis

Lupus can, in the vast majority of patients, be diagnosed quite precisely with blood tests. The hallmark of active SLE is the finding in the blood of a variety of antibodies - a group of proteins - which have the property of reacting against various chemicals in the nucleus of the cell.

The two antibodies most important in lupus are:

  1. anti DNA antibodies: very specific for lupus – indeed one of the most specific diagnostic tests in the whole of medicine.
  2. aPL – the test for ‘sticky blood’ – remember, 1 in 5 lupus patients show positive for this antibody, increasing the patients' risk of thrombosis and, in females, miscarriage.

Lupus Treatment

While the dramatic improvement in the outlook for Lupus patients during the past few years might be attributed to advances in Lupus treatment, it is more probable that the better prognosis is due to the wider recognition of the disease - especially in its milder form - by physicians throughout the world.

Drug Treatments

Drugs used in SLE fall into four main groups, being, in ascending order of powerfulness (and dangers of side effects):
• Aspirin and "non-steroidals"
• Anti-malarials
• Steroids ("cortisone")
• Immunosuppressives and biologics

Lifestyle

Sunlight's effect on Lupus

One of the well-known features of lupus is sensitivity to sunlight. Henrietta Aladjem, who has contributed so much education about lupus, called her book "The Sun is my Enemy".

There is no doubt that sunlight (more specifically UV light) has a major effect in activating the disease. Many patients notice that their rashes, as well as joint pains and other symptoms are worse after a period of sunbathing. Nevertheless, sun sensitivity is not a universal problem. Sun barrier creams have only been of limited help. Various local lupus groups have collected information from manufacturers in their own countries and have provided considerable guidance in choice of makeup and UV-barrier creams.

Research

A glance at the medical journals at any time over the past 35 years shows that Lupus, because of its widespread features, has been the focus of very intensive research. Indeed it has provided clues not only to the cause and mechanism of arthritis in general, but also some insight into a variety of other conditions.

The international journal, 'LUPUS' which publishes monthly research papers on Lupus from units all over the world, is now in its 27th year. Thanks to a generous offer from Sage, visitors to our website are able to download from each issue three selected articles.