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Lupus


What is lupus?
How common is lupus?
What are the warning signs of lupus?
What causes lupus?
What can you do about lupus?
Cochrane Reviews of Treatments
Outcomes
Additional Tips for Living Well

What is lupus?  

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?  

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?  

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 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?  

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:

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.

Medicine

Medications 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.

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.

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.

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.

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, 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

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 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

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.


Cochrane Reviews of Treatments  

The Cochrane Musculoskeletal Review Group (CMSG) is a specialized group of researchers and consumer representatives that belong to the Cochrane Collaboration, an international not-for-profit organization that encourages informed decisions about health care by preparing, maintaining and promoting reviews of the effects of various health care treatments.

CMSG members review the best available literature to determine the best evidence to support specific arthritis treatments. They explore the evidence for and against the effectiveness and appropriateness of treatments (medications, surgery, education, etc) in specific circumstances. The results are medical reviews that are then included in The Cochrane Library and made available to health professionals around the world.

For members of the public who also want to be informed about the evidence concerning health care practices and decisions in their lives, the Cochrane Musculosketal Review Group have summarized their reviews into consumer fact sheets. For the Cochrane consumer reviews related to lupus, visit www.arthritis.ca/cochrane.


Outcomes  

Persons 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  

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.



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This page was last reviewed/updated on : 04/29/2009