LUPUS... the disease with a thousand faces: Spotlight on Systemic Lupus Erythematosus (SLE)Created by:
What is Lupus?
Lupus is a disease that affects joints, muscles, and other parts of the body. Ir is often described as an auto-immune disease. This means that for some unknown reason people with lupus seem to develop antibodies (which usually fight bacteria and viruses) that attack healthy tissues instead. This produces inflammation in different parts of the body resulting in pain and swelling. Lupus can also affect the skin, heart, lungs, nervous system, kidneys, blood, and gut. Everyone is affected differently and symptoms vary widely among patients; this is why it is often referred to as the disease with a thousand faces. It is not uncommon for lupus patients to be be seeing a number of specialists and doctors including rheumatologists, dermatologists, cardiologists, endocrinologists, GP etc.
Nine in 10 sufferers are women, and it is estimated to affect nine out of every 10,000 Singaporeans. Lupud is a chronic, systemic disease. This means that it lasts a long time, probably the rest of ones life. However, nearly all people with lupus have periods of improvement (remissions). Some people have complete and long-lasting remissions if their disease is managed well. With research advancements over the past decade, specialists rarely sight a patient experiencing the more debilitating complications of the disease such as seizures, psychosis, and kidney damage.
Who gets lupus?
Lupus tends t affect women in their childbearing years, which suggests there may be a hormonal link to this disease. However, lupus can occur in young children or in older people. The number of female patients outnumbers men by nine to one. The disease is more common among coloured races.
What causes lupus?
The cause of lupus is unknown. Some people seem to inherit the disease from their ancestors. Research suggests that an unidentified virus may bring on the disease. Hormones may also play a part in the cause. A few drugs taken for conditions like high blood pressure or TB can cause lupus-like symptoms but these symptoms always disappear when the drug is ceased. Exposure to sunlight and stress seems to trigger lupus in some people.
Lupus can present in many different ways. The onset can be gradual or sudden.
Common but non-specific symptoms include:
- aches and pains
- hair loss
Symptoms and signs that are much more suggestive of lupud are:
- a rash over the cheeks and bride of nose (butterfly rashes)
- rashes after exposure to the sun or UV light
- ulcers inside mouth
- arthritis of two or more joints i.e. the joints hurt and are swollen
- pleurisy - pain in chest on deep breathing
- abnormal behaviour
- Raynaud's - fingers turning white or blue in the cold
- easy bruising
- ankle swelling on both sides
Lupus is usually easy to diagnose when an individual has many of the more characteristic symptoms and signs, but can be more difficult if only a few are present. Laboratory tests are then usually conducted to help confirm or reject the diagnosis. These tests may include a blood count and urine analysis. More specific lab tests look for antibodies, in particular antibodies to the nuclei of cells (the ANA or anti-nuclear antibody test) and antibody to DNA. Over 99% of people with lupus have a positive ANA test, but only about 30% of people with a positive ANA test have lupus. Other tests used to confirm are anti-double stranded DNA and complement C3,C4.
Lupus is unpredictable but in most cases it can be successfully managed with medications. Once an effective regime has been started, it is important for the paatient to keep to it faithfully and to inform the doctor of any change in symptoms so that the medications can be modified. The treatment program for lupus includes medications, getting enough rest when the disease is active, avoiding sunlight, and maintaining ga healthy wellbeing in general.
- Corticosteroids: Prednisolone is the most commonly used drug. Steroids are powerful drugs that suppress inflammation and are commonly used in controlling lupus (particularly during flare ups). It is important that the patient complies to the prescribed dose. Flare ups of disease can occur if the dose is tapered too rapidly.
- Antimalarial drugs: The most successful drug that has improved the quality of life for lupud sufferers to date has been hydroxychloroquine. It seems to be effective in reducing inflammation and controlling skin problems - the reason for its success is not clearly known.
- Aspirin and other anti-inflammatory drugs: are often added to the regimen to help control pain and reduce inflammation.
- Immunosuppressants: are usually used in conjunction with corticosteroids to control more severe disease. Patients on immunosuppressants will require closer monitoring in blood tests as these drugs can interfere with the formation of blood cells. Being on immune suppressing medications also makes lupus people prone to infection.
- Ointment/skin creams: doctors may prescribe creams containing sunscreen to protect against sun exposure. Corticosteroid-containing creams are often used to control skin rashes.
Pregnancy may mean special problems for women with lupus since the disease affects people in their childbearing years. Many patients have normal pregnancies if their disease is well controlled at the time when they become pregnant. There may be worsening of symptoms after delivery. An added complication comes from the medications causing birth defects (immunosuppressants). This is why It is important for patient and doctor to discuss and plan the best time for the patient to have a child. Lupus sufferers in general, may have higher incidence of miscarriages. This is more of an issue for those with coexisting antiphospholipid syndrome.
Coping with lupus
The Lupus Association Singapore (LAS) is a self-help group dedicated to provide support for patients and their families. The group aims to assist lupus people by providing practical support and by giving people the opportunity to share experiences with other who have lupus. LAS is also committed to research on the disease and in improving understanding of the disease.