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Systemic lupus erythematosus (also known as SLE or lupus) is an autoimmune disease. This means the immune system makes proteins called autoantibodies that can mistakenly attack healthy tissues, causing inflammation and a wide variety of symptoms.
Lupus symptoms can imitate other illnesses, making the process of diagnosis more complicated. Symptoms of lupus are different in each individual and can change over time. Symptoms may decrease or disappear when disease activity is low, only to reappear or worsen with subsequent disease flares. New symptoms can suddenly arise.
Lupus symptoms depend on which parts of the body the disease is active in or where it has been active. Most lupus symptoms fall within the broad categories of skin and hair symptoms, pain, generalized symptoms, neurological symptoms, and symptoms that affect the blood or urine.
Rashes are common in all types of lupus. The malar or butterfly rash is considered a typical sign of lupus. A malar rash shows up as patches across the cheeks and nose, which are purple on darker skin or reddish pink on lighter skin.
In discoid lupus, round or oval patches form on the head and upper body. In subacute cutaneous lupus, red or purple scaly patches and ring-shaped lesions develop. Lupus rashes are usually sensitive to sunlight or tanning beds and can cause paler or darker spots and thinning of the skin.
Lupus may cause hair loss, especially around the forehead. This can be caused by rashes, sores, or scarring on the scalp, or because of side effects from certain medications that treat lupus — including steroids and immunosuppressives (drugs that suppress the immune system).
Problems with small blood vessels in the hands may cause the fingers to turn red, white, or blue when cold — this is called Raynaud’s disease.
Joint pain and stiffness are extremely common symptoms of lupus. People with lupus may also experience headaches, muscle pain, and abdominal pain caused by inflammation of the pancreas.
Chest pain can be caused by inflammation of the lungs or heart, including:
Fatigue and malaise (a feeling of being unwell) are the most common lupus symptoms, experienced by 90 percent of those with lupus.
Other generalized symptoms include insomnia, hypertension (high blood pressure), swelling in the extremities, weight changes, and swollen lymph nodes. An article in BMC Psychiatry states that as many as one-third of people with lupus have depression and anxiety, which are common in those with conditions that occur for a long time.
People with lupus may develop dryness in the eyes, mouth, and vagina. These symptoms may be associated with a separate but related autoimmune condition called Sjögren’s syndrome. About 10 percent of people with lupus also have Sjögren’s syndrome.
Lupus can cause cognitive dysfunction (also called brain fog or “cog fog”), including problems with thinking or memory.
Other neurological symptoms may include vision changes, ringing in the ears, tremors, and balance problems. In severe cases, lupus can cause seizures, strokes, and psychotic episodes (delusions, paranoid ideation, hallucinations).
Lupus can lower the body’s production of blood cells, leading to abnormal bleeding and anemia (low red blood cell count), which can contribute to fatigue.
People with proteins called antiphospholipid antibodies in their blood are prone to form dangerous clots inside the blood vessels (thromboses).
About half of adults with lupus and between 40 percent and 70 percent of children with lupus will develop lupus nephritis (lupus that affects the kidneys). Pink or brown urine or urine that is foamy or frothy may be signs of kidney damage caused by lupus. Frequent urination may be a sign of kidney problems.
Some of the most severe complications of lupus do not cause noticeable symptoms until they become advanced.
About 50 percent of people with lupus have hypertension, which can damage organs and raise the risk for life-threatening cardiovascular events such as heart attack and stroke. In fact, cardiovascular disease (disease of the heart and blood vessels) is the number one cause of death in people with lupus.
Lupus nephritis can cause kidney failure, which may not become obvious until the kidneys are significantly damaged. Doctors order regular urine and blood tests to assess kidney function and detect these “silent” complications of lupus.
Studies have shown that osteoporosis (weakening of the bones) is more likely to occur in people with lupus due to the inflammation caused by the disease, as well as the use of corticosteroids (such as prednisone) used to treat the disease. Osteoporosis can lead to fractures, bone pain, and shorter height.
Lupus begins differently for each person, and early symptoms can include any of those listed here and many others. Some people experience multiple symptoms at once.
For about half of those with lupus, joint pain is among the first symptoms to be reported.
Approximately 20 percent of people with lupus first go to their doctor because of a rash.
More rarely, people with central nervous system lupus may have a seizure or a psychotic episode as the first symptom.
Women of childbearing age are far more likely than any other group to develop lupus. Researchers estimate that between eight and 15 women have lupus for every man who has the disease.
Some doctors have suggested that men who develop lupus are less likely to experience skin rash and joint pain than women. However, men may be more likely than women to develop serious lupus complications such as kidney disease and thrombosis.
If it is true that men develop more serious lupus complications, it may be due to delayed diagnosis because doctors are slower to suspect lupus in men. Studies are unsettled on whether symptoms differ between men and women with lupus, in part because there are far fewer men with lupus to participate in research.
Estrogen is a hormone that helps develop and maintain sexual and reproductive health, mainly in women. Some women experience worse lupus flares before menstrual periods and during pregnancy when estrogen production is high.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 214,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Do you have questions about lupus symptoms? Do you have advice for others? Share your feelings in the comments below, or start a conversation by posting on MyLupusTeam.
Ariel D. Teitel, M.D., M.B.A. is the clinical associate professor of medicine at the NYU Langone Medical Center in New York. Review provided by VeriMed Healthcare Network. Learn more about him here.
Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.
Jane Chung, PharmD, RPh earned a Bachelor of Science in Pharmacy Studies and a Doctor of Pharmacy from Northeastern University in Boston, MA. Learn more about her here.
