What is Lupus?

Lupus is the Latin for wolf, and the medical condition known as Systemic Lupus Erythematosus (or SLE) takes its name from the fact that it can cause a facial rash, which crudely resembles the face of a wolf. This unfortunate historical label is probably no longer appropriate since such severe rashes are rarely seen with modern medical treatment.

Lupus is a form of autoimmune disease. It principally affects the joints and skin but may also involve the heart, lungs, kidneys and brain.

There are two main forms of lupus:

  • Discoid Lupus: this affects only the skin, and
  • Systemic Lupus: this form of lupus involves the joints (hence the arthritis connection), and it may also affect the internal organs of the body. It is known as systemic lupus
  • Erythematosus, or SLE for short, and the word 'erythematosus' simply means 'red.'

What causes it?

The cause of lupus is unknown. However, research into the disease has provided evidence implicating hormones and infection (including viruses). There is some evidence that some people may have a genetic predisposition.

Who is at risk?

Lupus affects 8-10 times as many women as men, and it is usually seen in women of childbearing years. While it occurs more often in women of Afro-Caribbean and Asian origin (affecting 1 in 250 compared with 1 in 1,000 European women), it is becoming more common throughout Europe and the Americas. Only 10% of all lupus patients are male, and the reason for this is not known.

Lupus can lie dormant in the body for many years until some external trigger activates the disease.

What can trigger Lupus?

Lupus can be activated by a number of events, including

  • exposure to sunlight.
  • childbirth.
  • puberty.
  • medication: this form of lupus is known as 'drug-induced lupus' and it is usually reversed when the medication is stopped.
  • major trauma.
  • the menopause.
  • viral infection.

What are the symptoms?

It is rare for two people suffering from lupus to exhibit exactly the same symptoms. For some people, lupus is no more than a nuisance condition, which flares up very infrequently. For others, however, it can run a more severe course with frequent relapses.

Listed below are the most common symptoms complained of by lupus patients:

  • aches and pains in the joints.
  • sensitivity to sunlight, which may result in a rash on any part of the body.
  • pronounced rash over the cheeks and nose, even in cases where the patient has not been exposed to sunlight.
  • increased risk of miscarriage.
  • extreme bouts of fatigue and weakness.
  • recurring flu-like symptoms

night sweats.

  • pains in the chest and abdomen which are caused by inflammation of the tissues covering internal organs such as the heart, lungs and kidneys.
  • Raynauds Phenomenon,which is named after the French doctor who first described it. It means excessive sensitivity to cold in the fingers and toes resulting in cold white digits.
  • anaemia, which cause further fatigue and weakness.
  • nerve tissue may also be affected.

Does lupus affect every part of the body?

There is no typical pattern of presentation with lupus. The tissues that are affected will determine the symptoms.

The skin: About half of all lupus patients will suffer from a facial rash. It usually takes the form of a distinctive butterfly-shaped rash, which spreads over the cheeks and across the bridge of the nose. Other areas of the body, which are exposed to the sun on a regular basis, such as the arms, wrists and hands, may also develop a rash.

It is also common for lupus patients to develop a pinkish, spotty rash on the elbows and around the fingers and toes. This is caused by inflammation in small blood vessels under the skin.

A condition known as 'Raynaud's Phenomenon' is also another feature of lupus. This is caused by poor circulation and manifests itself in the hands where the skin will turn white and then blue again when exposed to cold.

The hair: Some degree of hair loss will be noticed in most lupus patients. This can be very alarming and upsetting, but the hair will grow back when the attack subsides. It may take several months for the hair to re-grow.

The joints: Almost all lupus patients will have problems with their musculoskeletal system, and some will go on to develop arthritis. Among the most commonly affected joints are those in the fingers, hands, wrists and knees. During a severe flare-up of lupus there will usually be pain and swelling all over the body, affecting muscles, ligaments and joints.

The kidneys: Roughly one-third of all lupus patients will develop inflammation of the kidneys. It must be pointed out that lupus does not usually cause kidney problems unless the disease is very severe. Filtration of the kidneys by means of dialysis, or a kidney transplant, may be considered where there is severe damage.

The heart and lungs: While lupus may affect the heart and lungs directly in a small number of patients, it is more common for the tissues lining these vital organs to become inflamed. These tissues are known as pericardium (lining the heart) and pleura (lining the lungs) and inflammation of these tissues is known as pericarditis and pleurisy respectively. The inflammation results in the accumulation of fluid in these tissues leading to chest pains and shortness of breath.

The tendons: During an active flare-up of lupus there may be inflammation in the tendons. This may cause the patient to be unable to fully extend their fingers. It may also cause walking difficulties if the tendons in the toes are affected.

The brain and nervous system: In very severe forms of lupus, the lining tissue of the brain and nervous system may become affected. However, this is very rare indeed. It is true to say that many patients suffering from lupus experience depression and anxiety from time to time. In some cases, counselling for the lupus patient and his or her family may be considered appropriate.

Blood: Most lupus patients (over 85%) will develop blood disorders at some point. Anaemia is the commonest disorder they experience. In rare cases clotting disorders may occur.

How is lupus diagnosed?

Given the diverse pattern of presentation lupus may remain undetected for years. There is a specific antibody blood test, which is present in the majority of lupus patients.

In addition to blood and urine tests, your GP will probably refer you for a number of specific laboratory tests to establish the extent of the disease. These tests will usually focus on the kidneys, the heart and lungs.

What is the treatment?

There is no known cure for lupus, but with modern medical advances, the disease can be kept under control.

Your GP will probably prescribe non-steroidal anti-inflammatory drugs (commonly known as NSAIDS) for inflammation in the joints and tendons. Anti-malarial drugs are occasionally used since they have been noted to have a beneficial effect in modifying the course of the disease.

Where there is damage to the lungs or heart as a result of lupus, your GP will prescribe a course of steroids. These drugs have a very powerful effect on inflammation. The strength and duration of treatment are determined by the severity of the disease.

Hospitilisation may be required to control more severe manifestations of lupus.

What can I do to help myself?

Two of the most important methods of self-help which will go a long way towards preventing regular flare-ups of lupus are to get plenty of rest and to avoid stress as much as possible. People should learn to be in tune with their bodies and to listen to what the body is telling them. If rest is needed, do not fight it. Chronic tiredness is a very real feature of lupus, so if the body demands rest, then take a break. It is also important to avoid stressful situations in so far as it is practical.

Others ways in which you can help yourself if you are diagnosed with lupus are:

  • stay as active as possible by taking some gentle form of regular exercise, such as walking.
  • stay out of direct sunlight, and protect any parts of the skin which are exposed to the sun.
  • eat a varied diet.

Sex and lupus

Lupus normally affects women in the prime of their lives, so the effect which it has on their sex lives is one which must be addressed. Dealing with a disease of this nature requires a great deal of patience and understanding on the part of those who are closest to the lLupus patient. Sometimes medication may affect libido and sexual performance.

A number of studies have shown that arthritis patients are free from pains in their joints for up to six hours after sexual intercourse. This indicates that sex can be very therapeutic for those suffering from joint pains as well as reassuring the lupus patient of her femininity and desirability.

Pregnancy and lupus

Some women with lupus are prone to miscarriage although the majority proceed to have normal deliveries of healthy babies. It is wise to contact your GP early in the pregnancy. Early referral to an obstetrician is usually arranged for close monitoring of the pregnancy.

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