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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Lupus Symptoms and Signs

At the onset of lupus, the symptoms are commonly very general, sometimes making diagnosis of the disease difficult. The most common initial complaints are fatigue, fever, and muscle and joint pain. This is called a "flu-like syndrome."

  • Fatigue is the most common and bothersome complaint. It is also often the only symptom that remains after treatment of acute flares. A flare in lupus is an acute increase in symptoms.
  • Fever during lupus flares is usually low-grade, rarely exceeding 102 F. A temperature greater than this should stimulate a search for an infection as the source of the fever. However, any fever in lupus should be considered an infection until proven otherwise.
  • Muscle pain (myalgia) and joint pain (arthralgia) without or with joint swelling (arthritis) are very common with the new onset of lupus and with subsequent flares.

Although lupus is a multisystem disease, certain organs are affected more commonly than others:

  • Musculoskeletal system: Joint pains (without swelling) are more common than arthritis in people with lupus. The arthritis of lupus is usually found on both sides of the body. The most frequently involved joints are those of the hands, knees, and wrists, often mimicking the joint disease of rheumatoid arthritis. People with lupus, especially those needing high doses of corticosteroids (steroids, prednisone), can suffer from a certain type of low-blood-flow injury to bone, causing death of the bone (avascular necrosis). The muscles themselves can sometimes become inflamed and very painful, contributing to weakness and fatigue.
  • Skin and hair: The skin is involved in more than 90% of people with lupus. Lupus skin disease is also referred to as cutaneous lupus. Skin symptoms of lupus are more common in whites than in African Americans. While the classic lupus rash is a redness on the cheeks (malar blush) often brought on by sun exposure, many different types of rashes can be seen in SLE. Discoid lupus with the red skin patches on the skin and scaliness is a special characteristic rash that can lead to scarring. It usually occurs on the face and scalp and can lead to loss of scalp hair (alopecia). It is more common in African Americans with lupus. Occasionally, discoid lupus can occur as an isolated skin condition without systemic disease. Hair loss can occur with flares of SLE even without skin rashes in the scalp. In this situation, the hair regrows after the flare is treated. Hair loss can also occur with immunosuppressive medications.
  • Kidney system: Kidney disease in lupus (lupus nephritis) also varies from mild to severe. Severe kidney disease often requires immune-suppression medication. Early signs of kidney disease can be detected by routine urine testing (urinalysis). Ultimately, a kidney biopsy may be necessary to both define the cause of the kidney disease as being lupus-related as well as to determine the stage of the kidney disease in order to optimally guide treatments. Kidney biopsies are often performed by fine-needle aspiration of the kidney under radiology guidance, but in certain circumstances, a kidney biopsy can be done during an open abdominal operation.
  • Heart and blood vessels: Inflammation of the sac surrounding the heart (pericarditis) is the most common form of heart problem in people with lupus. This causes chest pain and can mimic a heart attack. Also, growths (vegetations) can form on heart valves causing heart problems. Hardening of the arteries (atherosclerosis) can lead to angina (heart pain) and heart attacks in lupus patients who have required long-term prednisone therapy for severe disease or who have had longstanding untreated inflammation. In some people with lupus, the arterial blood supply to the hand can experience intermittent interruptions due to spasm of the artery. This causes whiteness and blueness in the fingers and is called Raynaud's phenomenon. It is brought on by emotional events, pain, or cold temperatures.
  • Nervous system: Serious brain (cerebral lupus or lupus cerebritis) and nerve problems and acute psychiatric syndromes occur in about 15% of patients with lupus. Potential disorders include seizures, nerve paralysis, severe depression, psychosis, and strokes. Spinal cord inflammation in lupus is rare but can cause paralysis. Depression is common in SLE. Sometimes it is directly related to active disease and sometimes to emotional difficulties in coping with a chronic illness or to the medications used to treat it, especially high doses of prednisone.
  • Lungs: More than 50% of people with lupus have some sort of lung disease. Inflammation of the lining of the lung (pleurisy) is the most common problem. This can lead to chest pain and shortness of breath and can be confused with blood clots in the lung or lung infection (pneumonia). Collections of water in the space between the lung and the chest wall occur as well (called pleural effusions). Pneumonia can occur in lupus patients who are taking immunosuppressive medications.
Return to Lupus (Systemic Lupus Erythematosus)

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Published: September 11

At the onset of my lupus, the only symptom I had was joint pain. Each morning, I'd wake up with pain in a different joint. One day, my wrist, the next day my knee, then my fingers, my elbow, etc. The pain would last all day, and it didn't matter if I took Tylenol or Advil or anything. It was there until I woke up the next morning with a different sore joint.

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Comment from: greatwife, 35-44 Female (Patient) Published: October 22

My early symptom at the age of 16 was joint pain. It felt like I was sleeping under an air conditioner and was very stiff. My mother has lupus, which made it easier to diagnose. My biggest flare up now is skin rash from the sun. It was most prevalent during my pregnancies. I have a wonderful doctor who has kept me healthy with the right mixture of drugs. I am now 36 with two healthy children and a wonderful husband who supports me.

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