Lupus Australia, Queensland Inc

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Lupus Australia Qld Inc.

Charity no. 1197 (Donations $2 & over are tax deductible)
Bank Name: CBA Kenmore BSB Number: 064152 Account Number: 10182820

PDF version is available here

What is Lupus?

Systemic Lupus Erythematosus (usually called Lupus or SLE) is an auto immune disease and is probably best described as a disease that causes inflammation in the small blood vessels in the connective tissue. This inflammation may cause abnormalities in the function and structure of such vital organs and kidney, heart, brain, lungs etc. Also less serious symptoms may occur in the skin and joints. It is not infectious or contagious.

 

Other types of Lupus?

Discoid lupus erythematosus (DLD) and subacute cutaneous lupus (SCLE) are two types of lupus where skin rashes and sun sensitivity are the primary symptoms. DLE may cause a red, scaly rash on the face, scalp, ears, arms, and/or chest, while in SCLE, rashes typically occur on the arms and upper body. With these types of lupus, the internal organs are spared and general health is not affected. Drug-induced lupus develops as a reaction to certain medications used to treat other medical conditions. Fortunately, drug-induced lupus goes away when the person stops taking the medication that triggered the lupus.

 

What are the main symptoms?

SLE is so complex that it may start with any one or more of a variety of symptoms. Facial rash (or “butterfly” rash) is often an early sign. Flu-like symptoms of fatigue, weakness, lack of energy, joint pain, loss of appetite and weight, and anaemia, are common in the beginning. The specific symptoms of lupus are caused by inflammation in one or more tissues of the body and can vary widely from person to person. As the disease progresses, almost every person suffers arthritis-like inflammation and pain in the joints. Some people may experience fever, swollen glands and even hair loss. There is no doubt that sunlight (more specifically UV light) has a major effect in activating the disease.

Lupus most commonly affects women (9:1 female to male), usually beginning in the young child-bearing years and may even cause recurrent spontaneous abortions as its initial feature or as one of its many complications. Please note that few people would ever develop all these conditions.

 

What causes lupus?

Although lupus was first recognised last century, it is only in the last 20 years that medical researchers have determined the nature of the underlying problem. This involves an attack by the body's immune (defence) system on its own tissues. The cause of this auto immune reaction is unknown. It is felt that both genetic and environmental factors are important in the causation of Lupus. There is a definite link between lupus and certain hormones, evidenced by the diseases preference for women of child-bearing age, but the relationship is not completely understood. As well, some external factors such as certain medications, viruses, sun exposure, stress, as well as some unknown environmental factors, are thought to trigger the onset of the disease. However, until research scientists can fully understand the functioning of the immune system, the cause of lupus will not be known.

 

How is Lupus diagnosed?

Diagnosis is usually achieved by a careful review of the patient's entire medical history coupled with an analysis of the results obtained in normal routine laboratory tests and some specialised tests. The diagnosis has been made easier by the development of blood tests called 'anti-nuclear antibodies' or ANA. The most specific of these, the presence of an antibody directed against DNA is almost diagnostic of SLE, and has largely replaced old tests such as the 'LE' Test.

Criteria for Classification of Lupus: was developed in 1971, revised in 1982 and gives 11 criteria. For diagnosis of SLE a person must have at least 4 of the criteria, either at the same time or over a period of time to be classified as having SLE, (where these symptoms are not explained by other conditions):

  1. Malar rash (rash on the cheeks)

  2. Discoid rash (red, scaly patches)

  3. Photosensitivity (sensitivity to sunlight)

  4. Mouth ulcers

  5. Arthritis pain or swollen joints

  6. Pleuritis

  7. Proteinuria greater than 0.5g/day (protein in the urine) or cellular casts

  8. Seizures or convulsions and/or psychosis (not drug induced)

  9. Haemolytic anaemia (low red blood count), lyeucopoenia (low white blood count), or lymphopenia (decrease in lymphocytes in the blood), or thrombocytopenia (decrease in the blood platelets)

  10. Presence of LE-cells, antibody to DMA, antibody to Sm, or a false-positive serum test for syphilis

  11. Positive test for antinuclear anitbody (ANA)

 

How is Lupus treated?

Treatment of lupus is determined by the severity of the disease and the extent of organ involvement. Patients need regular monitoring to assess their disease activity and monitor treatment. In this way disease flares can be detected early and treatment minimised. All patients are advised to avoid excess sunlight exposure. This means staying indoors during the brightest part of the day, wearing long-sleeved tops and broad-brimmed hats and using broad-spectrum, high-grade blockout.

Anti-inflammatory drugs are useful for treating arthrisis and mild pleurisy. They are usually well tolerated by can cause gastritis and stomach ulcers. Asprin is frequently used in low doses (e.g. 150mg/day) to prevent clotting, especially in patients with lupus anti-coagulant and pregnant lupus patients. Corticosteroid medications are widely used in treating lupus. Topical creams and ointments are used to control lupus rashes, with minimal side effects. Oral andintravenous corticosteroids may be needed to control more active lupus, particularly where internal organs are affected. The dose needs to be carefully monitored to minimise side effects such as weight gain, bruising, osteoporosis, diabetes and cataracts.

Antimalarial medications (e.g. Hydroxychloroquine) are reserved for patients with more severe disease (especially severe kidney disease) or where corticosteroids are proving ineffective in disease control. Patients with lupus are more prone to develop vascular disease resulting in coronary artery disease and strokes. To minimise this risk, patients should follow a balanced, low cholesterol diet. Maintaining appropriate body weight by diet and regular exercise is very important. And, of course definitely no smoking.

 

What is the prognosis?

Due to improved diagnostic tests and effective medication most people can anticipate a near normal life span, although lupus may cause adjustments in lifestyle.

 

Public awareness

Public awareness is of critical importance to those affected by lupus. Early diagnosis and treatment are proven to improve prognosis and quality of life. Government and private sector research dollars increase with recognition of the devastation of the disease. Families, friends and medical team support are enhanced by greater knowledge and understanding.

For those of us involved in the lupus movement, we never stop being amazed at how little lupus is recognised and understood. Each year and National Lupus Awareness Campaign is designed to deliver a message about this disease to the general public - a message of hope to the people and their families who live with lupus. Through posters, brochures, television and print we heighten awareness about lupus and let people know that there are organisations across Australia to give information, education and support.

 

Fatigue Anne H. Lootens (Reprinted with thanks to the Lupus Lantern, Kingsport TN)

Just because you can't see the wind doesn't mean you doubt it exists. Because you can both see and feel the effects of the wind, you know the wind is reality. The fatigue often associated with lupus can easily be compared to the properties of the wind. Although fatigue itself is invisible, it exists, and its effects are reality.

 

Some of the major reasons you may tire more easily include:

  • Lupus may cause a decrease in your joints' range of motion or a reduction in flexibility. More energy is needed to move such affected joints.

  • Joints and muscles weakened by lupus' symptoms or used less due to pain, swelling or stiffness, cause extra work for your other normal joints and muscles. This increase in workload produces rapid fatigue, even in your “good” joints and muscles.

 

 

Some basic helpful hints for dealing with fatigue are:

  • Plan your activities according to your available energy, instead of trying to fight your fatigue. Try alternating your tasks with rest periods, or break one job into smaller jobs. Making a concerted effort to conserve energy (especially in chores around the house) will also control your energy level.

  • Be attentive to your body's signals, rather than ignoring those helpful hints. Learn to recognise your body's daily cycle and plan around the times when you usually feel tired. Take advantage of good days, but don't overdo. Over activity will only make a bad day worse.

  • Accepting your limitations is probably the best way to deal with frustration your restricted activities may cause. Realising what you can and can't do and finding pleasant alternative activities will minimise your frustration and depression.

  • Exercise. It is not uncommon for a lupus patient to feel an overwhelming sense of fatigue, particularly after a flare-up of the disease and extended period of inactivity. You may find exercise helpful at this time. It should be done with the approval of your physician. Sometimes physicians recommend the cardiac rehabilitation exercise programme to their lupus patients, as it increases endurance without being over exertive.

The fatigue you're feeling is real. Just because you can't see it, don't doubt that your fatigue exists; rather do you best to deal with its effects. Being aware of your activity level, keeping your doctor informed about how you're feeling so he can tailor your treatment and leaning on those close to you for help when needed can help you overcome the hidden aspect of lupus – FATIGUE.

 

12 Steps to Coping with Lupus

  1. Become well educated about Lupus

  2. Try to prepare for the up-and-down nature of the disease. Plan alternate activities, alternate time for extra rest.

  3. Be open with family and friends about the unpredictable pattern of Lupus and how the disease affects you.

  4. By “listening” to your pain as a signal, you can begin to control it.

  5. Find positive ways to channel such negative feelings as anger and depression.

  6. Try to accept the things you cannot change rather than feeling constantly frustrated and upset over situation beyond your control.

  7. Remember that stress, depression and pain are all closely connected and each one affects the other. If you can, take steps to solve any one of these problems so as to reduce the extent of the others.

  8. You can reduce fatigue by developing priorities and learning to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in short amount of time.

  9. Although lupus doesn't directly affect the body's capacity for sexual enjoyment, the disease can cause problems. Open, honest communication is necessary to overcome these.

  10. If lupus has limited your hobbies and activities, find new ways to use your skills.

  11. Don't be afraid to ask for help if you need it. Family and friends, doctors and other health care professionals and the Lupus Association are all sources of help and support.

  12. Become a partner in your health care by taking care to stay as healthy as possible – physically and emotionally.

PO Box 974 Kenmore 4069 / Ph: 07 3878 9553 / Fax: 073878 9557 / Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it / www.lupus.com.au

 

 

 

 

 

Updates

Special Children Razzamatazz Show

Lupus Australia Qld Inc. has tickets for members to join the annual Special Children's Razz-A-Ma-Tazz show. The event is hosted by Rotary Club of Ipswich City Inc and will be held at the Brisbane Convention & Exhibition Centre on

Sunday 22nd April 2011

  • 1:00pm
  • 3:30pm

Please indicate the number of tickets required with time preferences and include stamped self address envelope to The Lupus Shop 1/24 Station Rd, Indooroopilly Q 4068.

Lupus Booklet


A nineteen page booklet filled with stories and poems written by people who have lupus

Including a foreword written by Dr Carola G Vinuesa and Dr Matthew Cook, research scientists who are looking at the causes of lupus.

Contact us if you are interested in purchasing this interesting little book


Latest Events

Sat Sep 09 @09:00 -
September Meeting
Sat Oct 14 @09:00 -
October Meeting
Sat Nov 11 @09:00 -
November Meeting
Sat Dec 09 @09:00 -
December Meeting