WHAT IS LUPUS?
Systemic Lupus Erythematosus (SLE/Lupus) is a life changing and currently incurable disease. Lupus is treatable, survivable and, most importantly, many aspects of the disease can be managed by you – the patient. Receiving a diagnosis of lupus should not be taken lightly. It is a serious and chronic disease and can be life threatening.
Lupus is a chronic disorder of the immune system. The immune system is designed to attack foreign substances in the body. If you have lupus, something goes wrong with your immune system and it attacks healthy cells and tissues. Lupus can affect any organ of the body sometimes leading to irreversible damage. Parts of the body commonly affected:
• Blood vessels
WHAT CAUSES LUPUS?
The cause of lupus is not known. Research suggests that genes play an important role, but genes alone do not determine who gets lupus. It is likely that many factors trigger the disease. Lupus can present with symptoms for the first time in the setting of an environment trigger such as an infection, medication, or sun exposure.
Symptoms of lupus vary, but some common symptoms of lupus are:
• Painful or swollen joints
• Muscle pain
• Fever with no known cause
• Red rashes, most often on the face
• Pain in chest on deep breathing (pleurisy)
• Hair loss
• Fingers or Toes turning pale, purple, and/or blue when cold (Raynaud’s phenomenon)
• Sun- or light-sensitivity (photosensitivity)
• Swelling (edema) in feet, legs, hands, and/or around eyes
• Mouth or nose ulcers
• Extreme fatigue (tiredness)
Less common symptoms may include:
• Anemia (a decrease in red blood cells)
• Dizzy spells
• Feeling sad
Symptoms may come and go. The times when a person is having symptoms are called flares, which can range from mild to severe. New symptoms may appear at any time. No two people with systemic lupus will have identical symptoms.
WHO GETS LUPUS?
There are 1.5 to 2 million people in the United States who suffer from systemic lupus. More people have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined. Nine times more women than men have lupus out-numbering male patients ten to one. The onset of lupus occurs most often in persons 20-40 years of age, but can occur at any time. Young women of child-bearing age are most frequently affected. There is a misconception that men don’t get lupus, but lupus can occur in any sex at any age. About 20% of people with lupus developed the disease before 20 years of age. It is rare to get lupus before age 5.
People of all races can have the disease; however, African American women have a three-times higher incidence (number of new cases) than Caucasian women. They tend to develop the disease at a younger age and to develop more serious complications. Lupus is also more common in women of Hispanic, Asian, and Native American descent.
Lupus appears in the first-degree relatives of lupus patients more often than it does in the general population, which indicates a strong hereditary component. However, most cases of systemic lupus occur sporadically, indicating that both genetic and environmental factors play a role in the development of the disease.
TYPES OF LUPUS
Discoid Lupus (also Cutaneous Lupus or DLE) is confined to the skin. It is characterized by persistent flushing of the cheeks or disk-like lesions (i.e. rash) that appear on the face, neck, scalp and other areas exposed to ultraviolet light (sunlight, fluorescent light). The rash is usually raised, scaly red but not itchy. These lesions, if not adequately treated, may develop into permanent scars. If they involve the scalp, they can result in bald spots. Discoid lupus is common in men but can affect any sex.
Systemic Lupus Erythematosus (SLE) is usually more severe than discoid lupus and can affect almost any organ in the body. In some individuals, this may mean skin and joint involvement, while in others the lungs, heart, kidneys and blood may be affected. The disease is characterized by periods in which few if any symptoms are evident (remission) and other periods in which it becomes active again (flare). Periods of improvement may last weeks, months, or even years. The disease tends to remit over time. Some patients never develop severe complications, and the outlook is improving for those patients who do develop severe manifestations.
Drug-Induced Lupus is the result of certain prescribed drugs. These medications can create a lupus-like syndrome which is similar to systemic lupus, but very rarely affects either the kidneys or the nervous system. The most commonly implicated drugs, are hydralazine (used to treat hypertension) and procainamide (used to treat irregular heart rhythms). Drug-induced lupus is more common in men than women because they are treated with these drugs more often than women. However, only about four percent of the individuals who take these drugs will develop the antibodies of lupus and an even smaller percentage will actually develop drug-induced lupus. When the medication is stopped, lupus symptoms usually fade.
Neonatal Lupus is a rare autoimmune disorder that is present at birth and affects infants of women who have lupus and/or Anti-Ro/SSA Antibodies. Affected infants often develop a red rash, may develop liver problems and low blood platelets. Some infants also develop a heart condition known as congenital heart block. The symptoms associated with neonatal lupus, with the exception of congenital heart block, usually resolve themselves within the first several months of life.
There is no single test to diagnose lupus. It may take months or years for a doctor to diagnose lupus. Your doctor may use many tools to make a diagnosis:
• Medical history
• Complete exam
• Blood tests
• Skin biopsy (looking at skin samples under a microscope)
• Kidney biopsy (looking at tissue from your kidney under a microscope).
Lupus is a difficult disease to diagnose, predict the progress of, and treat. It is also quite common to have lupus in combination with other connective tissue or autoimmune diseases. When this occurs, it is often called an overlapping disease, which all too often leads to misdiagnoses.
HOW IS LUPUS TREATED?
You may need special kinds of doctors to treat the many symptoms of lupus. Your health care team may include:
• A family doctor
• Rheumatologists—doctors who treat arthritis and other diseases that cause swelling in the joints
• Clinical immunologists—doctors who treat immune system disorders
• Nephrologists—doctors who treat kidney disease
• Hematologists—doctors who treat blood disorders
• Dermatologists—doctors who treat skin diseases
• Neurologists—doctors who treat problems with the nervous system
• Cardiologists—doctors who treat heart and blood vessel problems
• Endocrinologists—doctors who treat problems related to the glands and hormones
• Social workers.
Your doctor will develop a treatment plan to fit your needs. You and your doctor should review the plan often to be sure it is working. You should report new symptoms to your doctor right away so that treatment can be changed if needed. The goals of the treatment plan are to:
• Prevent flares
• Treat flares when they occur
• Reduce organ damage and other problems.
Treatments may include drugs to:
• Reduce swelling and pain
• Prevent or reduce flares
• Help the immune system
• Reduce or prevent damage to joints
• Balance the hormones.
In addition to medications for lupus itself, sometimes other medications are needed for problems related to lupus such as high cholesterol, high blood pressure, or infection. Alternative treatments are those that are not part of standard treatment. No research shows that this kind of treatment works for people with lupus. You should talk to your doctor about alternative treatments.
WHAT CAN YOU DO?
Whether you have recently been diagnosed with lupus or have been living with it for many years, learning to cope with a debilitating disease is not an easy task. The ways in which this disease can physically and emotionally affect a person varies widely from patient to patient. The stress that comes from the ups and downs of coping with lupus, takes a toll mentally and physically.
There are many feelings you’ll be faced with; that is normal. Don’t ignore or deny them. Seek to understand where those feelings are stemming from so you can develop techniques for coping.
It is vital that you take an active role in your treatment. One key to living with lupus is to know about the disease and its impact. Being able to spot the warning signs of a flare can help you prevent the flare or make the symptoms less severe. Many people with lupus have certain symptoms just before a flare, such as:
• Feeling more tired
• Stomach ache
You should see your doctor often, even when symptoms are not severe. These visits will help you and your doctor to:
• Look for changes in symptoms
• Predict and prevent flares
• Change the treatment plan as needed
• Detect side effects of treatment.
Find ways to cope with the stress of having lupus. Exercising and finding ways to relax may make it easier for you to cope. A good support system can also help. A support system may include family, friends, community groups, or doctors. Many people with lupus have found support groups to be very useful. Besides providing support, taking part in a support group can make you feel better about yourself and help you to keep a good outlook.
Learning more about lupus is very important. Studies have shown that patients who are informed and involved in their own care:
• Have less pain
• Make fewer visits to the doctor
• Feel better about themselves
• Remain more active.
Other Things You Can Do to Help Yourself
• Get regular exercise
• Quit smoking
• Get enough rest
• Use Sunscreen and UVA/UVB Protection Daily
• Adhere to Treatment
It is important to allow yourself to accept the feelings and emotions that you may be experiencing and acknowledge that you have good reason to feel this way. Be patient and kind to yourself. Living and coping with lupus or any other chronic illness can be difficult, but by learning proper techniques and tools for coping, you can live a positive and productive life.
PREGNANCY AND CONTRACEPTION FOR WOMEN WITH LUPUS
Women with lupus can and do have healthy babies. There are a few things to keep in mind if you are pregnant or thinking about becoming pregnant:
• Pregnancy in women with lupus is considered high risk, but most women with lupus carry their babies safely.
• Pregnant women with lupus should see their doctors often.
• Lupus can flare during pregnancy.
• Pregnancy counseling and planning before pregnancy are important.
Women with lupus who do not wish to become pregnant or who are taking medicine that could be harmful to an unborn baby may want reliable birth control. Recent studies have shown that oral contraceptives (birth control pills) are safe for women with lupus.
Sources: National Institute of Arthritis and Musculoskeletal and Skin Diseases, American College of Rheumatology, Lupus Foundation of America, Lupus International