Several symptoms and drug side effects require immediate evaluation. Call your doctor if you experience difficulty breathing, a change in level of consciousness, confusion, mood swings, seizures, arm or leg weakness or numbness, severe headache, visual loss, chest pain, blood in your stool or vomit, severe abdominal pain, a new fever or a fever much higher than normal, bleeding or bruising, or any combination of new symptoms.
Patients can do a number of things to limit disease flare-ups and manage symptoms. Learn as much as you can about your disease so that you can avoid whatever seems to make it worse.
- Take an active role in developing and monitoring your treatment plan. Create goals to limit flares, treat the ones that occur, decrease inflammation, and prevent complications.
- Postpone elective surgery, including dental surgery or extractions, until lupus symptoms subside. Surgery can worsen lupus symptoms.
- Discuss contraception with a gynecologist who is familiar with lupus. Birth control pills may not be an option; researchers are still investigating their safety for lupus patients. Intrauterine devices (IUDs) may not be used due to the possibility of infection.
- Consult your doctor before receiving any immunization. Obtain routine medical care. Follow your doctor's advice and do not stop taking your medications.
Recognize the early signs of a flare, and then take steps to stop it or reduce its effects. Signs of a flare include additional fatigue, joint pain, rash, fever, stomach pain, headache, dizziness, or any new symptoms. Discuss with your doctor how to manage the flare.
Balance periods of work or exercise with down time. When tired, listen to your body and take a break. You may need naps during the day.
Learn how to manage emotional stress. Stress can make your symptoms worse. Relaxation techniques, exercise, establishing priorities, and developing a support system often help.
Exercise within your limits. Walking, swimming and bicycling are usually good when done in moderation. Stop exercising before you feel exhausted. Regular exercise builds endurance and helps fight fatigue.
Exposure to the sun or ultraviolet (UV) light can trigger a flare, so avoid the sun. Use a sunscreen with a 15 or higher SPF, and wear a hat and long-sleeve shirts. Remember that glass windows do not protect you from the UV light. Avoid florescent lights since they can emit UV rays and may cause a flare.
Eat a healthy diet and skip foods that seem to worsen your symptoms. The Lupus Foundation of America suggests a diet that is high in fiber and low in fat, sodium, and refined sugars. There is no such thing as a lupus diet.
Avoid anything that produces allergy symptoms, such as drugs, hair dye, or makeup.
Seek early treatment of infections. Steroid or anti-inflammatory drugs given to treat lupus may mask symptoms, such as a fever.
Set flexible goals for yourself. Accept your limitations, and re-evaluate your expectations during a flare. This will help you maintain a positive outlook. When coming out of a flare, gradually resume normal activities.
Keep an up-to-date list of your medications, symptoms, medical history, physicians, and laboratory tests. A close and open partnership between you and your physician is key to a good outcome.
Seek emotional support to help you cope with some of the lifestyle changes you may have to make. You may feel angry, scared, depressed, or frustrated about your inability to maintain your normal activities. You may feel like you are losing control. If friends and family do not understand what you are going through, talk to your doctors and nurses and ask for professional help. Some patients join and participate in support groups, which offer emotional support. The groups can improve your self-esteem and morale and help you develop coping skills.
Your doctor is the best source of information on the drug treatment choices available to you.
Physical or occupational therapy may help some patients. Therapists can design a specific program to help you regain and maintain function. They can also offer advice about splints to protect your joints.
Orthopedic surgery may be needed if a lupus patient develops steroid-related bone dmage called osteonecrosis that may necessitate a joint replacement.
Some patients seek non-traditional approaches to treatment, but no research supports these remedies. Alternative treatments include nutritional supplements, herbs, vitamins, fish oil, ointments, creams, chiropractic care, and homeopathy. No research exists to support the benefit of these treatments.
Always discuss alternative therapies with your physician, especially when taking herbs, which may contain contaminants or interact poorly with your current medications. Be aware that it is possible to take too many vitamins.
Some patients find massage or acupuncture help, but there is no proof of their benefits.
Plan pregnancies during remissions, if possible. Select an obstetrician who has experience managing pregnancies of patients with lupus. Some women experience flares during pregnancy or shortly after delivering. Miscarriages and premature births occur more often in women with lupus than in healthy women. About one-quarter of female lupus patients deliver prematurely; another 25% miscarry or experience a fetal death. The use of aspirin or a blood-thinner called heparin may prevent such problems in the future.
Medications given to treat lupus may not be safe for the developing baby. Patients taking steroids are more likely to experience maternal complications, including high blood pressure, diabetes, and kidney problems.
Some women with lupus deliver babies with a condition called neonatal lupus. The infants may have a skin rash, or liver or blood abnormalities, all of which are short-lived. Rarely, the infant can develop a heart defect that can lead to the need for a pacemaker.
If possible, it is recommended that you be free of symptoms and off medication for six months before becoming pregnant. Regardless of the lupus, close monitoring by an experienced team of physicians is recommended.
There is no cure for lupus, although most patients can successfully manage the disease. A complete remission occurs in fewer than 20% of lupus cases.
Eighty percent to ninety percent of patients live a normal life span. In 1954, only half the patients diagnosed with lupus lived for four years. Today, 80% to 90% of lupus patients have a normal life span, according to the American College of Rheumatology. Patients survive longer due to better treatment and new drugs.
Lupus and the drugs used to treat it may cause many problems, including premature artherosclerotic heart disease. The drugs may cause high blood pressure or increase fat levels in the blood.
The inflammation itself can have a negative effect on blood vessels. Monitoring for high blood pressure, cholesterol elevations, diabetes, and heart disease is recommended.
Severe flares can be life-threatening. Report any new symptoms to the doctor. Severe cases of lupus are more difficult to control. Early treatment markedly improves the outcome.
Lupus-related kidney disease, other organ disease, and infection are the most frequent causes of death during the first decade after diagnosis, and blockages of arteries in the heart cause most deaths in the second decade. Early diagnosis and treatment prevents additional damage. If the disease progresses and the kidneys fail, dialysis may be needed. Lupus patients are often considered for transplants.
Drugs used to treat lupus can cause serious complications. Drugs that suppress immune function can increase the risk for cancer and infections. Steroids can alter blood sugar levels, cause cataracts or glaucoma, increase blood pressure, and weaken bones.
About a quarter of lupus patients have mild disease. Patients with a mild case do not develop life-threatening, lupus-related symptoms. However, joint pain and fatigue may cause disability.
Patients with lupus should receive regular, routine medical care from their rheumatologist to monitor their condition.
Report any new symptoms or possible drug side effects to the doctor. Early treatment decreases the risk of permanent tissue damage.
Patients taking anti-malarial drugs should have an eye exam every six months, since antimalarial drugs can be toxic to the eye.
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