Lupus, also called Systemic Lupus Erythematosus (or SLE), is a disease that can affect all parts of the body. The skin, joints and kidneys are commonly affected and it may develop very slowly and be present for many years. Lupus is commonest in young women, but men and older people can get it as well. It is also more common in Asian, Hispanic or Black people than in white people. There is medical treatment that may help control Lupus, but there is no cure.
Lupus is the Latin name for wolf and was used for this condition because, before the days of drug treatments, the skin disease could eat away at the face and leave extensive damage, as if it had been attacked by a wolf. The full name is ‘systemic Lupus erythematosus’ (SLE). Systemic means it can affect all parts of the body and erythematosus means the skin can have a red colour around the rash. Drug treatments mean that the rash which gave Lupus its name is not seen nowadays, or can be controlled in its early stages.
Not everyone with Lupus gets a skin rash, but the name has stuck!
The cause of Lupus is not fully understood. Lupus is caused by the body’s immune (natural defence) system. The job of the immune system is to defend the body against invaders, but sometimes the immune system can go wrong and damage normal tissues in the body. A particular type of antibody, called anti-dsDNA antibody, is nearly always found in Lupus, and can be measured in the laboratory from a blood test. There is a type of Lupus where blood clots and miscarriages can occur, called confusingly by several names (anti-phospholipid syndrome, Hughes syndrome, and Lupus with anti-cardiolipin antibodies).
More details the cause of Lupus...
Lupus can very occasionally occur as a side effect of some drugs, but these people with drug induced Lupus do not seem to get Lupus kidney disease.
Lupus has many possible symptoms; each person with Lupus is slightly different from each other one. Many of the symptoms of Lupus occur commonly in people who do not have Lupus. This is one the reasons that Lupus can be so difficult for doctors to diagnose, and why there is often a long delay between the appearance of the first symptoms and a positive diagnosis.
Some people only ever have Lupus in one part of the body, in other people problems can develop slowly over years; and occasionally, a severe disease can affect all parts of the body at once.
Common Lupus symptoms are tiredness and fatigue; joint pains; skin rashes.
More details on the symptoms of Lupus...
Lupus damages parts of the body because antibodies travel in the blood stream and get trapped in the tissues of the body, causing local damage (called glomerulonephritis). The kidneys have a large blood supply, and the filters of the kidneys are very delicate, so it is not surprising that the kidneys are affected in some cases. However, it is not possible to predict whether a particular individual with Lupus will get Lupus in the kidneys.
More details on how antibodies cause kidney disease...
About 1 in 3 people with Lupus will get kidney disease at some time in their life. Sometimes kidney disease is the first sign of Lupus, sometimes kidney disease only develops after Lupus has been present for some years.
Kidney disease in Lupus is discovered in four main ways:-
More details on the tests needed if Lupus causes kidney disease...
The most important kidney disease is glomerulonephritis, which is inflammation in the filters of the kidneys (click here for a general description of glomerulonephritis, which occurs in several conditions, not just Lupus) . There are several types of glomerulonephritis in Lupus. These have been put into 5 categories by the World Health Organisation, and a specialist can predict the long term outcome of kidney disease by knowing which type of glomerulonephritis someone with Lupus has, and how badly the kidney is affected by that type. In addition to glomerulonephritis, Lupus patients can get kidney infections and a condition associated with anti cardiolipin antibodies (also called anti-phospholipid syndrome).
More details of all these types of kidney disease...
More detail on self help and the treatment of Lupus kidney disease...
Lupus can be a serious disease in some people, but more often it continues for many years, causing problems without causing death. In 100 people with Lupus:-
70 people will not get kidney disease
20 people will get troublesome but not serious kidney disease
8 people will get kidney failure, some will need dialysis
2 people will get severe kidney failure and a Lupus crisis (see next section)
This is a term used for a severe flare of Lupus. Lupus usually has periods of time when it is not active, and then can become active, causing perhaps a skin rash and increase in protein levels in the urine. This would be called a ‘Lupus flare’. Most flares are mild, and can be treated with drugs through the outpatients clinic.
Occasionally, perhaps about 1 in 100 Lupus flares, the disease is so severe it could be called a ‘Lupus crisis’. In a Lupus crisis, there is a rapid onset of severe disease in many parts of the body. There is kidney failure; disease in the lungs with breathlessness; fluid around the heart; inflammation and swelling in the brain, often causing fits. Although cases of Lupus crisis are rare, many require treatment on an intensive care unit, and about 1 in 3 people with Lupus crisis will die. Recovery from a Lupus crisis occurs in the majority of cases, but some people are left with some long term problems.
If someone with Lupus gets kidney failure, this may be so severe that there is a life threatening build up of waste products or of water in the body. This is fatal unless artificial kidney treatment (called dialysis) is given. People with Lupus can receive dialysis in the same way as anyone else.
More details on dialysis and factors that make it successful...
If kidney failure becomes so severe that dialysis treatment is required, a Lupus patient may also be suitable for a kidney transplant, depending on tests for suitability.
More details on suitability for transplantation...
Many people with Lupus lead a normal life, however, others have to live a restricted life according to their symptoms.
People with Lupus can do most of the activities they want, but sun exposure can trigger a Lupus attack in many people, so look cool in a large hat and use sunscreen.
Pregnancy is often successful in women with Lupus, but there can be problems if a woman has particular types of Lupus antibodies in her blood.
More details about pregnancy in Lupus patients...
Support and advice can be obtained from a local kidney patient association, and from Lupus UK, the national Lupus support group. Telephone Lupus UK on 01708 731251 for details of their written information (which covers areas such as skin and joint disease not dealt with here) and information on local support groups and meetings.
Other websites which can help with Lupus as it affects the body apart from the kidneys are:-
www.Lupus.org
www.Lupus.org.uk
www.hughes-syndrome.org (Hughes syndrome is another name for the type of Lupus where blood clots and miscarriages occur, see the “what causes Lupus” section above)
NKF Controlled Document No. 26, Lupus, written (not available). Last reviewed 27 September 2006.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
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Last updated: 30 May 2008
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