LUPUS

sumber: The Arthritis Society

What is lupus?
Lupus (pronounced loo-pus) is the name of a group of diseases.
The most common and serious type of lupus is called systemic lupus erythematosus (pronounced er-reeth-a-ma-toe-sus). Many people just call this type by the name lupus. It can also be shortened to SLE.
With SLE, the body’s immune system stops working properly. The immune system’s job is to fight off germs and disease. However, with SLE, the immune system attacks healthy tissues.
This attack on healthy tissues causes them to become swollen and painful. This is called inflammation.
Inflammation can happen in the skin, muscles or joints. The heart, lungs, kidneys, blood vessels or the nervous system can also be attacked by the immune system.
With SLE, there may be periods of inflammation, called flare-ups, and then periods where there is little or no inflammation, called remissions.
Lupus is the name given to a group of chronic autoimmune diseases. Systemic lupus erythematosus (SLE) is the most common and serious type of lupus. With SLE, the immune system that normally protects the body from germs, viruses, and bacteria begins to malfunction. It generates antibodies that attack healthy tissue in different parts of the body. These tissues become inflamed as a result. Inflammation can occur in the skin, muscles, joints, heart, lungs, kidneys, blood vessels and the nervous system. SLE can fluctuate between active periods (flare-ups or exacerbation), and times of minimal symptoms or no symptoms (remission).
Other types of lupus are discoid lupus erythematosus (DLE) and subacute cutaneous lupus (SCLE). With these types of lupus, skin rashes and sun sensitivity are the main symptoms, and the internal organs are not attacked. However, approximately 10% of people diagnosed with these more limited forms of lupus will go on to develop symptoms of SLE. How common is lupus?
It affects 15,000 (1 in 2,000) Canadians.
Women develop lupus up to 10 times more often than men.
It usually occurs in women between the ages of 15 and 45.Lupus can affect men, women, and children of any age, but it occurs most often in women of childbearing age (ages 15 to 45). Systemic lupus erythematosus (SLE) is eight to 10 times more common in women than men.What are the warning signs of lupus?
Pain in the muscles and joints of the hands, arms, shoulders, feet, knees, hips or jaw. The pain may move from area to area and may cause the skin to feel hot, be red or swell.
Fever and loss of appetite.
Low energy and fatigue.
Skin rashes, often on the face. Sometimes the rash is across the cheeks and bridge of the nose. This is called a butterfly rash. Sometimes the rash is red and scaly and appears on the face, scalp, ears, arms or chest. A milder form of lupus called discoid lupus causes this type of rash.
Small, usually painless sores in the moist lining of the mouth or nose. These are called mucosal ulcers
Feeling of being very sensitive to sunlight.
Changes in the colour of the fingers when they are cold.
Sudden and unexplained weight loss or gain.
Increase in the number and severity of headaches.
Increase in loss of hair over the whole scalp.
Chest pain when lying down or taking deep breaths
Ongoing high blood pressure.
Swelling of the feet and legs.SLE is a different disease for each person it affects because it can target any of the body's tissues. Each person has his or her own combination of symptoms and these symptoms range from mild to severe. If you have recently experienced three or more of the warning signs of SLE you may want to discuss this with your doctor.What causes lupus?
The exact cause of lupus is unknown.
Some people with lupus have other family members with it.
Since it often affects women during their childbearing years, there may be a link between lupus and hormones. Hormones are substances produced by the body that help different organs in the body run normally. Certain hormones allow women to be able to get pregnant. Estrogen is an example of a hormone.The relationship between hormones and the disease's preference for women of childbearing age is not understood. Certain external factors, such as particular medications, viruses, sun exposure, and prolonged and severe stress, are also thought to trigger the onset of SLE. This is also not fully understood, and therefore the cause of lupus will be unknown until scientists gain more knowledge about the functioning of the immune system.What can you do about lupus?
If your doctor thinks you have SLE, he or she will usually refer you to a rheumatologist (pronounced room-a-tol-o-jist). A rheumatologist is a doctor who has received special training in the diagnosis and treatment of problems involving inflammation of the joints, muscles and other parts of the body.
If your doctor thinks you might have SLE or another form of lupus, he or she may perform a physical examination and order laboratory tests, such as blood tests. There is not just one single symptom, sign or test that will give a diagnosis of SLE.
There is no cure for SLE but there are things you can do to manage the disease.
Learn as much as you can about lupus. Speaking with people who are specialists in arthritis care can provide you with the information you need.
At this time there is no cure for SLE. Therefore treatment is designed to control the symptoms and reduce the number of flare-ups. Establishing the correct diagnosis is important because something can be done to manage most forms of arthritis and most therapies work best when started early in the disease.
Diagnosis of SLE can be difficult because the symptoms vary from person to person. The symptoms can also mimic those of other medical conditions. If your doctor thinks you might have SLE or another form of lupus, he or she may review your medical history and symptoms, and may perform a physical examination and order laboratory tests, such as blood tests. It might take a period of time before a diagnosis is made. Usually a diagnosis can be made when there is evidence of a number of the main warning signs of SLE, and other conditions that can also indicate the presence of SLE:
Pleuritis, an inflammation of the lining of the lungs, or pericarditis, an inflammation of the lining of the heart. These will cause chest pain when lying down or taking deep breaths.
Decreased kidney function, which may be mild or severe. Weight gain or swelling of the feet and legs may indicate kidney involvement.
Central nervous system involvement. This may be exhibited by seizures or psychosis (acute disturbance in mental functioning).
Decreased blood cell count (lower than normal amounts of circulating red blood cells, white blood cells or platelets)
Autoantibodies present in the blood. These point to an abnormality in the immune system response.
Antinuclear antibodies present in the blood.
Your doctor may reach a diagnosis of SLE after thoroughly examining the combination of symptoms, conditions, and test results, and after ruling out other illnesses. There is no single symptom, sign or test that will give a diagnosis of SLE.
If you are diagnosed as having SLE, the goal of your treatment plan will be to bring the symptoms and disease under control. Some people with SLE may require no treatment if their symptoms are not severe and the disease is mild. Treatment plans are based on the type and severity of symptoms, and are individualized to meet each person's needs. Your active involvement in developing your prescribed treatment plan is essential.
If you are a woman with SLE be sure to discuss birth control methods with your doctor, as well as the best time to become pregnant. Birth control methods and pregnancy can change the level of hormones in your body, and in turn can have an impact on your SLE.
Because your immune system will not be working properly if you have SLE you should also get regular immunizations against infectious diseases.
Steps should also be taken to avoid flare-ups. Each person's pattern of lupus flares tends to be unique. A person with lupus may be able to detect early warning signs of flares. Early detection can lead to more effective treatment while symptoms are in the beginning stages of a flare.MedicineMedications are often prescribed for people with SLE. This approach is to control symptoms and help bring the disease into remission. The variety of medications commonly used depends on the organ(s) involved and the degree of involvement.
Acetaminophen is often given to manage the pain of SLE. A common form of acetaminophen is Tylenol®. It can relieve pain but does not reduce inflammation.For mild to moderate SLE doctors often recommend acetaminophen (Tylenol®, Panadol®, Exdol®, etc.). Acetaminophen is a pain reliever, but has no anti-inflammatory properties. For this reason it can usually be safely taken along with most prescription medications, should these also be needed. However, there are daily limits of acetaminophen that can be taken, so caution should be exercised, particularly if other medications that contain acetaminophen (for example, it's found in many cold remedies) are being used. A serious overdose of acetaminophen can cause liver damage.
Nonsteroidal anti-inflammatory drugs (NSAIDs - pronounced en-seds) are a type of medication that helps reduce inflammation. NSAIDs are often used when acetaminophen does not control the pain of SLE.NSAIDs reduce pain when taken at a low dose, and relieve inflammation when taken at a higher dose. NSAIDs such as ASA (Aspirin, Anacin, etc.) and ibuprofen (Motrin IB, Advil, etc.) can be purchased without a prescription. Examples of NSAIDs that require a prescription include Naprosyn, Relafen, Indocid, Voltaren, Feldene, and Clinoril. The various NSAIDs and Aspirin®, if taken in full doses, usually have the same levels of anti-inflammatory effect. However, different individuals may experience greater relief from one medication than another. Taking more than one NSAID at a time increases the possibility of side effects, particularly stomach problems such as heartburn, ulcers and bleeding. People taking these medications should consider taking something to protect the stomach, such as misoprostol (Cytotec). There are also several side effects of some NSAIDs that can either imitate symptoms of SLE or complicate it further.
Oral cortisone could also be prescribed. Cortisone is a steroid that reduces inflammation and can control your immune system.Cortisone is a steroid that reduces inflammation and swelling and that can influence regulation of the immune system. It is a hormone naturally produced by the body. Corticosteroids are man-made drugs that closely resemble cortisone. The most common form of corticosteroid is called prednisone, taken in pill form. Prednisone is usually considered when SLE symptoms are not being controlled by other treatments, and there is concern about an imminent flare-up, or the disease is severe and perhaps life threatening. For some, prednisone is a life-saving medication. Prednisone use needs to be carefully monitored because of its many side effects, and the drug must never be stopped abruptly. Some of the side effects from long-term use include cataracts, high blood pressure, sleep problems, muscle loss, bruising, thinning of the bones (osteoporosis), weight gain and increased risk of infections. The goal with this and most drugs is to find the lowest effective dose that will avoid as many of the side effects as possible.
Antimalarial medications help in managing fatigue, skin rashes and joint pain.Antimalarials were originally designed to treat malaria, but have been found to be also effective in managing some of the symptoms of SLE, such as fatigue, skin rashes and joint pain. Aralen (chloroquine) and Plaquenil (hydroxychloroquine) are examples of antimalarial medications. If you have SLE and are given antimalarials, keep in mind that it may take several months before you feel any benefits from these drugs. The most common side effect is stomach upset. A more rare but serious side effect affecting the eyes can occur with the use of some anti-malarials that are taken in high doses for a long period of time. Loss of vision can occur if the medication accumulates in the back of the eyes. This side effect rarely occurs, but for this reason if you are prescribed an antimalarial, it will be necessary that you have an eye examination before starting the medication, and get regular follow-up eye examinations.
Cytotoxic drugs can be used to control inflammation and the immune system. These are also called immunosuppressive drugs.
Cytotoxic, or immunosuppressive, drugs are a group of powerful medications that suppress inflammation and the immune system. You may be prescribed these if your SLE symptoms are difficult to control with prednisone alone or if you are experiencing side effects from prednisone. Cytoxan (cyclophosphamide), Procytox (cyclophosphamide) and Imuran (azathioprine) are commonly prescribed cytotoxic drugs. Serious side effects include decreased blood cell counts, increased risk of infection, and a risk of developing certain types of cancer. People with SLE on these medications must have regular blood tests and be monitored very closely by their doctor.
All the regularly prescribed medications are aimed at bringing lupus symptoms under control and bringing about a remission of the disease. Early treatment can reduce the chance of permanent tissue damage, and may reduce the amount of time a person with SLE needs to stay on high doses of a medication.
Diet
Maintain a well-balanced diet. If you have SLE, a poor diet can contribute to flare-ups.
Avoid drinking too much alcohol, as this can also cause flare-ups.Once your SLE is brought under control by medication, there are a number of changes you may have to make to your lifestyle to minimize the possibility of future flare-ups. Certain activities, like having a poor diet, can contribute to lupus flares. Excessive use of alcohol and smoking can also trigger inflammation and increase symptoms.
Exercise
Regular exercise can help prevent future flare-ups. It can help you manage stress, reduce pain and keep your body strong.
If you exercise outdoors be sure to wear sunscreen. People with lupus are often sensitive to sunlight, and too much exposure to it can cause flare-ups.
Exercise can help prevent flare-ups of the symptoms of SLE and can help you feel better overall. Stress is often a contributing factor in flare-ups, and regular exercise reduces stress. There are three main types of exercises:
Range of motion exercises reduce stiffness and help keep your joints moving. A range of motion exercise for your shoulder would be to move your arm in a large circle.
Strengthening exercises maintain or increase muscle strength
Endurance exercises strengthen your heart, give you energy and control your weight. These exercises include walking, swimming and cycling.Always consult a doctor before beginning an exercise program.
Protect Your Joints
If you have SLE, your joints may be affected. Protecting your joints can reduce pain and fatigue.
Be kind to your body. After doing heavy work, or doing the same task over and over, stop. Slow down by doing an easy task, or by taking a rest.
Use your back, arms and legs in safe ways to avoid putting stress on joints. For example, carry a heavy load close to your body.
Use helpful devices such as a cart to carry your grocery bags, or an enlarged handle that fits over a knife handle so you can hold it easily.If you have SLE your joints may be affected. Protecting your joints means using them in ways that avoid excess stress. Benefits include less pain and greater ease in doing tasks. The activities to protect your joint can also help you reduce fatigue. Excessive fatigue has been shown to be a factor in flare-ups.Three main techniques to protect your joints are: Pacing, by alternating heavy or repeated tasks with easier tasks or breaks, reduces the stress on painful joints and allows weakened muscles to rest.Positioning joints wisely helps you use them in ways that avoid extra stress. Use larger, stronger joints to carry loads. For example, use a shoulder bag instead of a hand-held one. Also, avoid keeping the same position for a long period of time.Using helpful devices, such as canes, luggage carts, grocery carts and reaching aids, can help make daily tasks easier. Small appliances such as microwaves, food processors and bread makers can be useful in the kitchen. Using grab bars and shower seats in the bathroom can help you to conserve energy and avoid falls.
Relaxation
Relaxing the muscles around an area of inflammation reduces pain.
Relaxation can also help you manage stress and fatigue.
There are many ways to relax. Try deep breathing exercises. Listen to music or relaxation tapes. Meditate or pray. Another way to relax is to imagine or visualize a pleasant activity such as lying on a beach, or sitting in front of a fireplace.
Excessive fatigue and uncontrolled stress can contribute to the risk of future flare-ups of SLE. Developing good relaxation and coping skills can give you a greater feeling of control over your arthritis and a more positive outlook. Support and counselling is available to help you deal with stress.
OutcomesPersons living with SLE can expect to live a relatively normal life with intervals of remissions and flare-ups. By following the advice of their doctor, taking medication as prescribed, and seeking help for side-effects of medications or new symptoms, most people with an early diagnosis of SLE can look forward to a normal life span. Some people have severe flares requiring hospitalization and intensive treatment, but the majority are never hospitalized.Additional Tips for Living Well
The Arthritis Society offers a variety of programs and services that can be helpful.
You can reach the Society at 1-800-321-1433 from anywhere in Canada.
You can also reach us through our Web site at www.arthritis.ca
Along with the physical symptoms of arthritis, many people experience feelings of helplessness and depression. Learning daily living strategies to manage your arthritis gives you a greater feeling of control and a more positive outlook. To get the best results, people affected by arthritis need to form close ties with their doctors and therapists, and become full partners in their treatment. From our perspective, it's all part of 'living well with arthritis.' There are several resources you can use in finding out how best to manage your own arthritis. Here are a few:
The Arthritis Self-Management Program (ASMP) is a unique self-help program offered by The Arthritis Society to help you better control and manage your arthritis.
The Open Forum within this Web site is an opportunity to discuss and share information with other visitors - people who, through their own experiences, may be able to offer some useful insights.
Of course, there are many other valuable resources for people with arthritis. If you're unclear about where to look for help, be sure to call The Arthritis Society at 1-800-321-1433