What is it?
- Lupus (LOO-pus) is also called systemic (sis-TEM-ik) lupus erythematosus (er-i-thee-mah-TOH-sus), or SLE. Lupus may cause problems with your skin, joints, blood, brain, heart, lungs, and kidneys. Lupus is a lifelong disease that can be mild, serious, or even life-threatening. There is no cure for lupus, but its symptoms and long term damage can be decreased with treatment.
- Lupus is a disease that may have active and quiet (remission) periods. The active periods, sometimes called "flares" or "relapses," are when you have symptoms of lupus. A remission period is when you have few or no symptoms of the disease. A remission may last months or years, or you may not have remission periods at all.
- Lupus is an autoimmune (aw-toh-i-MUN) disease. It happens when your immune (i-MUN) system does not work as it should. Your immune system protects your body by attacking harmful things, like germs. With lupus, your immune system gets confused and starts attacking your own body.
- It is not known what causes your immune system to attack your own body and cause lupus. Scientists think that more than one thing may cause it. You may be more likely to have lupus if someone else in your family had a similar disease. Lupus may be triggered (started) by infections (such as a cold), stress, an injury, or sunlight. Different things may trigger lupus in different people. You cannot "catch" lupus from someone with lupus.
- Female hormones may play a role in causing lupus, which may be why it is more common in women. Hormones are special chemicals that your body makes to control how different parts of your body work. Lupus symptoms may show up or get worse during or after a pregnancy.
- Certain medicines may cause lupus. This is called drug-induced lupus. Unlike chronic (lifelong) lupus, drug-induced lupus usually goes away when the medicine is stopped. For patients with chronic lupus, certain drugs may cause a flare of lupus symptoms.
Signs and Symptoms:
Lupus symptoms often look or feel like signs and symptoms of other medical conditions. It can be very hard for your caregiver to diagnose your lupus. It may take months to years for your caregiver to know for sure that you have lupus. Lupus is different for everyone who has it. Signs and symptoms often depend on what body systems are affected by your lupus.
Common signs and symptoms include:
- Painful joints that may be swollen, red, or warm. Joints are the places in your body where two bones meet.
- Swelling of the face or legs. You may also have swollen lymph (limf) nodes in the neck, arm, or groin.
- Fever over 100°F (38°C).
- Long-lasting or extreme tiredness (fatigue).
- Skin rashes (sometimes butterfly-shaped on your cheeks and nose).
- Chest pain when taking a deep breath.
- Hair loss.
- Sunlight may bother you, cause a rash, or make other lupus symptoms worse.
- Mouth or nose sores.
- If the digestive tract is affected, you may have nausea (upset stomach), vomiting (throwing up), or diarrhea (loose BMs). You may have pain in your abdomen (belly). You may also lose weight.
Other problems that lupus may cause in your body include:
- Kidney problems.
- Hardening of the arteries, which increases your chance of having heart problems. You may also have high blood pressure.
- Fingers turning white or blue when exposed to cold. This is called Raynaud's (ray-NOD's) syndrome (SIN-drom). Cigarette smoke, caffeine, stress, and other things can also trigger Raynaud's symptoms.
- Forgetfulness, trouble concentrating (paying attention to a task), dizziness, or confusion. You may also have trouble expressing your thoughts.
- Headaches, vision problems, or seizures (convulsions).
- Anemia (low iron level in your blood). You may have other blood problems such as bleeding problems, blood clots, or stroke (blood clot to your brain).
- Emotional problems, such as depression or anxiety.
- There is no test that can say for sure that you have lupus. Certain test results can help caregivers know the best way to treat you. Tests can also help your caregiver find other problems. Treating lupus involves controlling its symptoms and preventing long-term damage to your body.
- You may need tests on your blood and urine. X-rays and scans may be needed of your joints or other parts of your body. Tissue may be taken from your skin, a muscle, or a kidney for tests. This is called a biopsy (BYE-op-see).
- Some of the medicine used to treat lupus may decrease your symptoms but cause other problems. Ask your caregivers about side effects to watch for when taking your lupus medications.
- Other treatments may include learning ways to exercise and control stress. Rest, avoiding infection, and early treatment of flare-ups are very important for people who have lupus. It is also important to protect yourself from the sun, eat healthy, and control other illnesses you may have.
- It is possible that a food allergy may make lupus worse.
Herbs and Supplements:
Before taking any herbs or supplements, ask your caregiver if it is OK. Talk to your caregiver about how much you should take. If you are using this medicine without instructions from your caregiver, follow the directions on the label. Do not take more medicine or take it more often than the directions tell you to. The herbs and supplements listed may or may not help treat your condition.
- Boswellia (Boswellia serrata) has been used for many years, but has not been studied in people who have lupus.
- Turmeric (Curcuma longa) has been used for many years, but has not been studied in people who have lupus.
- Willow (Salix alba) has been used for many years, but has not been studied in people who have lupus.
- Bromelain has been used, but has not been studied in people with lupus.
- DHEA (dehydroepiandrosterone) may help decrease lupus symptoms and has been studied in people. Even though DHEA is available over-the-counter, it is a hormone that may have dangerous side effects, if it is not used correctly. You should only use DHEA with your doctor's permission.
- Fish oil (EPA or DHA) may help with lupus.
- Relaxation therapies appear to be helpful for lupus.
- Traditional Chinese medicine (TCM), which includes acupuncture and herbs, can be helpful in lupus.
Other ways of treating your symptoms:
Other ways to treat your symptoms are available to you.
Talk to your caregiver if:
- You would like medicine to treat lupus.
- Your symptoms have not gone away or improved by these self-help measures.
- You have questions about what you have read in this document.
SEEK CARE IMMEDIATELY IF:
- You have blood in your urine.
- You have blood in your BM.
- You have breathing problems.
- You have bad abdominal (belly) pain.
You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care will be used to treat you. You always have the right to refuse treatment.
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