Lupus - Symptoms

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The symptoms of lupus can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

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What are lupus symptoms and signs?

People with SLE can develop different combinations of symptoms and organ involvement. Common complaints and symptoms and signs include

  • fatigue or feeling tired,
  • low-grade fever,
  • loss of appetite,
  • muscle aches,
  • hair loss (alopecia),
  • arthritis,
  • ulcers of the mouth and nose,
  • facial rash ("butterfly rash"),
  • unusual sensitivity to sunlight (photosensitivity),
  • inflammation of the lining that surrounds the lungs (pleuritis) and the heart (pericarditis),
  • poor circulation to the fingers and toes with cold exposure (Raynaud's phenomenon).

Complications of organ involvement can lead to further symptoms that depend on the organ affected and severity of the disease.

Skin manifestations are frequent in lupus and can sometimes lead to scarring. In discoid lupus, only the skin is typically involved. The skin rash in discoid lupus often is found on the face and scalp. It usually is red and may have raised borders. Discoid lupus rashes are usually painless and do not itch, but scarring can cause permanent hair loss (alopecia). Over time, 5%-10% of those with discoid lupus may develop SLE.

Over half of the people with SLE develop a characteristic red, flat facial rash over the bridge of their nose. Because of its shape, it is frequently referred to as the "butterfly rash" of SLE. The rash is painless and does not itch. The facial rash, along with inflammation in other organs, can be precipitated or worsened by exposure to sunlight, a condition called photosensitivity. This photosensitivity can be accompanied by worsening of inflammation throughout the body, called a "flare" of the disease.

Picture of systemic lupus erythematosus (SLE or lupus) butterfly rash
Picture of a butterfly rash on the face, a characteristic sign of systemic lupus erythematosus (SLE)

Typically, with treatment, this rash can heal without permanent scarring.

Most people with SLE will develop arthritis during the course of their illness. Arthritis from SLE commonly involves swelling, pain, stiffness, and even deformity of the small joints of the hands, wrists, and feet. Sometimes, the arthritis of SLE can mimic that of rheumatoid arthritis (another autoimmune disease).

More serious organ involvement with inflammation occurs in the brain, liver, and kidneys. White blood cells can be decreased in SLE (referred to as leukopenia or leucopenia). Also, low blood-clotting factors called platelets (thrombocytopenia) can be caused by lupus. Leukopenia can increase the risk of infection, and thrombocytopenia can increase the risk of bleeding. Low red blood cell counts (anemia) can occur.

Inflammation of muscles (myositis) can cause muscle pain and weakness. This can lead to elevations of muscle enzyme levels in the blood.

Inflammation of blood vessels (vasculitis) that supply oxygen to tissues can cause isolated injury to a nerve, the skin, or an internal organ. The blood vessels are composed of arteries that pass oxygen-rich blood to the tissues of the body and veins that return oxygen-depleted blood from the tissues to the lungs. Vasculitis is characterized by inflammation with damage to the walls of various blood vessels. The damage blocks the circulation of blood through the vessels and can cause injury to the tissues that are supplied with oxygen by these vessels.

Inflammation of the lining of the lungs (pleuritis) with pain aggravated by deep breathing (pleurisy) and of the heart (pericarditis) can cause sharp chest pain. The chest pain is aggravated by coughing, deep breathing, and certain changes in body position. The heart muscle itself rarely can become inflamed (carditis). It has also been shown that young women with SLE have a significantly increased risk of heart attacks due to coronary artery disease.

Kidney inflammation in SLE (lupus nephritis) can cause leakage of protein into the urine, fluid retention, high blood pressure, and even kidney failure. This can lead to further fatigue and swelling (edema) of the legs and feet. With kidney failure, machines are needed to cleanse the blood of accumulated waste products in a process called dialysis.

Involvement of the brain can cause personality changes, thought disorders (psychosis), seizures, and even coma. Lupus of the nervous system (neurologic lupus) can lead to damage to nerves cause numbness, tingling, and weakness of the involved body parts or extremities. Brain involvement is referred to as lupus cerebritis.

Many people with SLE experience hair loss (alopecia). Often, this occurs simultaneously with an increase in the activity of their disease. The hair loss can be patchy or diffuse and appear to be more like hair thinning.

Some people with SLE have Raynaud's phenomenon. Raynaud's phenomenon causes the blood vessels of the hands and feet to spasm, especially upon exposure to cold. The blood supply to the fingers and/or toes then becomes compromised, causing blanching, whitish and/or bluish discoloration, and pain and numbness in the exposed fingers and toes.

Other conditions that can accompany lupus include fibromyalgia, coronary heart disease, nonbacterial valvular heart disease, pancreatitis, esophagus disease with difficulty swallowing (dysphagia), swollen lymph nodes (lymphadenopathy), liver disease (lupoid hepatitis), infections, and a tendency to spontaneous blood clotting and thrombosis.

Return to Lupus (Systemic Lupus Erythematosus or SLE)

See what others are saying

Comment from: Mary, 55-64 Female (Patient) Published: November 05

On vacation at about 12 years old I took a sulfa antibiotic for cold/flu. I developed ulcers in my mouth and then went on to have severe joint pain to the point that my mom and aunts had to carry me to the bathroom. I remained in bed and even unable to turn myself over or change positions without help and overwhelming joint pain. Years later I was diagnosed with SLE (systemic lupus erythematosus) and the episode with sulfa suggested as my first flare.

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Comment from: cupcake, 35-44 Female (Patient) Published: March 11

I was diagnosed with lupus in 2014. I woke up one morning with shortness of breath and my arms, hands, and legs were killing me, and I was beyond fatigued for 3 days and had fever. I take naproxen and prednisone.

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