Learning About Lupus

This article looks at Systemic Lupus Erythematosus (say ‘erith-em-ato-suss) - or SLE - and aims to give you a basic understanding of what it is and how it is diagnosed.

What is Lupus?

There are many different types of lupus but the most common type is SLE which can damage different parts of the body at different times – joints, blood vessels, skin and organs. It may be mild or severe enough to cause death but everyone’s experience of it is unique.

SLE is an autoimmune disorder which means that the body attacks its own tissues because it thinks they are harmful or foreign to it.

Lupus is 10 times more common in women than men and occurs most commonly in the 10-30 age group. It’s also more common in Afro-Caribbean and Asian people.

What causes SLE? The cause isn’t fully understood but is thought to be a combination of heredity and certain factors in a person’s environment that trigger it.

Doctors do know that a few drugs can trigger it – griseofulvin, procainamide and hydralazine – in some individuals.

What are the symptoms of SLE?

Because the disease affects different parts of the body at different times, each person’s symptoms are unique. Most patients have some degree of:

  • fever
  • malaise – feeling generally unwell and out of sorts
  • fatigue
  • weight loss.

Other symptoms include:

  • Joint pain and swelling
  • Some people get arthritis which is often in the fingers, hands, wrists, and knees
  • Chest pain when taking a deep breath
  • Hair loss
  • Mouth sores
  • Sensitivity to sunlight
  • Skin rash - a "butterfly" rash over the cheeks and nose
  • Swollen lymph nodes

Other symptoms depend on the part of the body that is affected:

  • In the brain and nervous system, symptoms can include:
  • Headaches
  • Mild cognitive impairment (understanding/memory/concentration etc)
  • Numbness, tingling, or pain in the arms or legs
  • Personality change
  • Psychosis
  • Risk of stroke
  • Seizures
  • Vision problems

In the digestive system, abdominal pain, nausea, and vomiting are common In the heart - abnormal heart rhythms (arrhythmias) In the kidney - blood in the urine In the lungs - coughing up blood and difficulty breathing In the skin - patchy skin colour, fingers that change colour when cold (Raynaud's phenomenon)

How is SLE diagnosed? Lupus is a challenging disease for the doctor and patient and difficult to diagnose in the first instance.

The doctor will give the patient a thorough examination and ask about her medical and drug history. He will order a lot of blood tests and the patient may be sent for a kidney biopsy, a chest X-ray and urine test.

There are 11 typical characteristics of lupus and if a person has at least 4 of these 11, then diagnosis is positive.

The criteria identified are:

  • malar rash (ie a rash on the cheeks)
  • discoid rash (ie coin or oval shaped rash)
  • ulcers in the mouth/nose
  • photosensitivity (ie sensitive to light/sunlight)
  • arthritis
  • pleuritis or pericarditis (fluid round the heart/lungs and can be heard when the doctor listens to the chest)
  • renal disease (seen on a urine test)
  • neurologic disease - seizures, psychosis
  • haemtologic disease (ie certain blood diseases, seen in some specific blood tests)
  • immunologic disease (ie certain immune markers seen in the blood when it’s tested)
  • positive antinuclear antibodies if the lupus is not thought to be caused by any drugs (again, seen in the blood when tested).

What is the prognosis for SLE sufferers? The 10-year survival rate for people with lupus is more than 85%. Survival and disability will be affected by which organs are affected.

Complications with SLE include:

  • Blood clots in the legs (deep vein thrombosis - DVT) or lungs (pulmonary embolism - PE)
  • Destruction of red blood cells (hemolytic anemia) or ‘anemia of chronic disease’
  • Fluid around the heart (pericarditis), endocarditis, or inflammation of the heart (myocarditis)
  • Fluid around the lungs (pleural effusions), damage to the lung tissue
  • Pregnancy complications, including miscarriage and flare-up of SLE during pregnancy
  • Stroke
  • Very low blood platelets in the blood (thrombocytopenia)
  • Vasculitis, which may damage arteries anywhere in the body.

There are support groups for SLE sufferers all over the world. An internet search will reveal one near you. You may meet or hear about people who are in a very much worse situation to your own, or very much better. Remember that every person with SLE has a different experience and a different disease course.

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