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SYSTEMIC LUPUS ERYTHEMATOSUS (SLE)

What is Systemic Lupus Erythematosus ?

The name lupus means wolf. Doctors gave the name lupus erythematosus (red) to the facial rash which is common in this disease. When it was found that many organs (systems) of the body were affected it was renamed systemic lupus erythematosus. The variety of organs involved result in widely different symptoms in individual patients. In some people it will start suddenly and in others gradually. The disease produces inflammation in each organ or tissue affected. Sometimes it is mild and temporary. Less commonly the inflammation continues. Then the tissues swell up, cells from the bloodstream pour in to try and heal it, scar tissue can form and the tissue will be damaged. SLE is a disorder which flares up and then settles again. An attack is often like influenza with fever, tiredness, headache, shivers and joint pains. The joints, which are one of the systems affected, may become red, hot and swollen. Most patients also have rashes. These can be of any type but most commonly a red rash on the face and bridge of nose. Sometimes the circulation is affected and the fingers go blue and white and feel numb when exposed to cold (Raynaud's phenomenon). Patchy loss of hair develops in some people and sensitivity to sunlight can occur, causing unpleasant worsening of the skin rash. Inflammation round the lungs gives pain on breathing or fluid in the chest (pleurisy). Inflammation of the sac round the heart (pericarditis) may give chest pain. Kidney involvement (lupus nephritis) may lead to high blood pressure and protein in the urine. Any part of the body can be inflamed leading to a multitude of symptoms. It is often difficult to diagnose as it is the great mimic of other diseases.

How does Systemic Lupus Erythematosus occur ?

The cause of SLE is not known but we know that it is an auto-immune disease. It is quite important to know what this means. Normally the body produces certain chemicals (called antibodies) and white blood cells. These help deal with any foreign agent such as viruses. In SLE these antibodies are produced in enormous amounts. However, instead of destroying just foreign agents, they also damage your own tissues. They are therefore called auto-antibodies. Inflammation results in each system which is affected. The auto-antibodies clog up tiny blood vessels and interfere with the blood supply to organs. Luckily, with treatment, most inflamed joints get better very quickly without permanent damage. Sensitive tissue such as kidneys are most vulnerable, and don't respond to treatment so well.

Why does Systemic Lupus Erythematosus occur ?

Women in the childbearing years are much more affected than men. It is more common in West Indians and in the Far East. Sunlight, an infection, injury, certain drugs or pregnancy may start the disease or trigger off another attack.

Treatment involved for Systemic Lupus Erythematosus

The doctor will diagnose SLE by measuring antibodies and other chemical substances in your blood. If the kidneys are suspected of being involved, you will need to have a renal biopsy. For this, a small piece of kidney is taken through a needle passed into one of your kidneys from the back, under local anaesthetic. The skin and liver may similarly need to have a biopsy to see if they have been affected. The tissue obtained is examined carefully under a microscope to make the diagnosis. Steroids are cortisone-like drugs which suppress inflammation. They are given as tablets for a number of weeks. As the disease improves, the dose is reduced. In life-threatening attacks, steroids need to be given directly into a vein, with the patient in hospital. In mild disease, they are not needed at all. Certain disease-modifying drugs can also be used to control the disease. They are often preferred because they have fewer side-effects than steroids in the long term. A drug called hydroxychloroquine helps joints and rashes. Azathioprine or cyclophosphamide is helpful when the kidneys are affected.

During treatment for Systemic Lupus Erythematosus

SLE responds immediately to steroids. These can be reduced after the full treatment period and other tablets are introduced to control the disease. They may take longer to begin working, but allow the dosage of steroids to be reduced further. Steroids may cause weight gain with a swelling of the face and more fat on the abdomen. The skin bruises easily and swollen ankles may result from fluid being retained by the body. Diabetes and high blood pressure can develop. If taken for many months or years, the bones can be thinned (osteoporosis). The bones can be protected and the risk of fracture reduced by taking calcium and Vitamin D or drugs called bisphosphonates. The side effects of steroids are related to the dose of tablets taken and apart from the bone changes, mostly disappear when the tablets are stopped. Other disease modifying drugs need regular supervision by the hospital specialist and regular blood tests because the white blood count may be reduced below safety levels. If you notice any new symptoms at all, it is safest to tell your doctor immediately.

After Treatment

SLE rarely damages the joints and skin permanently. The inflammation settles with treatment in most parts of the body. However, it does tend to come back again. There may be many months between the attacks. Special care is needed if drugs are taken for other diseases, as they can cause flare-ups. You will need to tell your doctor about any other drugs which may be started or stopped. You should avoid sunbathing, because of the sensitivity of the skin. Any planned pregnancy needs to be carefully discussed with the doctors concerned.

If Systemic Lupus Erythematosus is left untreated

SLE used to be a life-threatening disease. With treatment, it is likely that you will have a fairly normal quality of life and lifespan. However, if you have more severely affected kidneys you may have to anticipate a somewhat shorter life expectancy.

Effects on the family of Systemic Lupus Erythematosus

SLE is rare in children of patients with SLE. Because SLE is a chronic disease, your family and friends may need to provide support from time to time.