Lupus Site - a guide for lupus patients and their families

Lupus is a disease where the immune system becomes overactive. Antibodies are produced and almost all organs of the body can be involved.

Who gets lupus?

Lupus is most common in young females (teens, 20s and 30s). Men and children can also have lupus. The ratio of females to males is nine to one.

Is it a world-wide disease?

Yes, lupus affects people from all countries in the world. There are certain countries in which the disease appears to be more prevalent, for instance the Caribbean, the Far East and China.

What is the outlook?

Most patients with lupus can expect a normal life-span. The disease, if diagnosed early and treated appropriately at an early stage, most commonly settles and ultimately goes into remission - i.e. the patient requires no medication.

What are the features of lupus?

Fatigue, flu-like illness, skin rashes (including the classical 'butterfly' rash on the cheeks and nose), hair-loss and, more importantly, internal organ involvement including pleurisy, kidney disease and brain inflammation. Some patients with lupus have a clotting tendency and this can present, for instance, as a thrombosis in the vein or an artery.

How is it treated?

Early in the disease, usually in the more aggressive stages, it is treated with corticosteroids and/or antimalarials. Where there is kidney or brain disease other drugs such as immunosuppressives are used. In those patients with a clotting tendency anticoagulants are used. Management is usually aimed at reducing medication to the lowest dose possible and, ultimately, to weaning the patient off stronger medication.

How can I help myself?

Some of the factors which exacerbate lupus are stress, excessive sunlight and, occasionally, drug allergies (especially to the antibiotic Septrin). Once the patient is treated there is every possibility of a normal lifestyle. Even those patients who are sensitive to ultraviolet light and develop skin rashes can, with normal commonsense protection against excess UV exposure, lead a reasonably normal lifestyle. There are no diets which have been found especially helpful in lupus though it must be said that some patients do appear to be allergic to certain foods and the only way to find this out is by trial and error.

Where can I find out more?

In addition to the self-help societies such as LUPUS UK there are patient networks in most countries of the world. For doctors researching lupus, there is an international journal 'LUPUS' as well as a growing number of books available on the disease.