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Why is Lupus Difficult to Diagnose?

by | Dec 28, 2023

Causes of Diagnosis Delay

For many people with lupus, the average diagnosis delay is six years from the onset of symptoms. Misdiagnosis with another condition often contributes to the time delay before establishment of a proper diagnosis of lupus.

The symptoms of lupus can overlap with the symptoms of other conditions, and many potential symptoms can be present at onset. Initial lupus symptoms can vary for each individual. Symptoms also frequently fluctuate in the same individual over time. Lab tests contribute to the initial evaluation, but lab tests play only one role in the initial diagnostic big picture. Lab results can also vary from one time to the next in the same individual.   

Lupus Sign and Symptom Clues

Diagnostic clues include a constellation of possible physical signs and symptoms that occur due to inflammation caused by the body’s immune system incorrectly attacking normal cells and tissues. The most common lupus sign and symptom clues include the following:

  • Fever
  • Rash: butterfly (malar) facial rash or round (discoid) rash typically located on scalp and face 
  • Nose and mouth sores (mucositis)
  • Hair loss (alopecia)
  • Joint pain and inflammation 
  • Inflammation of the connective tissue lining of the lungs (pleurisy) and heart (pericarditis) sometimes occurring with fluid collection (effusion)
  • Sun and light sensitivity (photosensitivity)
  • Extreme fatigue
  • Headaches
  • Swelling (edema) around the eyes and in the hands, feet, and legs
  • Color changes (white, then blue) in the fingers and toes along with numbness when cold or stressed (Raynaud’s phenomenon)

Please note that while some of the items listed above are commonly recognized physical signs and symptoms of lupus, not all items listed are included in the specific clinical diagnostic criteria that health care providers utilize in establishing a formal clinical diagnosis of lupus.

Lupus Lab Test Clues

A number of lab tests are utilized when evaluating the clinical picture for lupus in the presence of signs and symptoms. Some lab tests are common blood and urine tests like complete blood count (CBC), basic metabolic panel (BMP), and urinalysis (UA). Other less common lab tests are used to look for specific evidence of lupus activity. Lupus lab diagnostic clues include the following: 

  • Complete blood count (CBC): looks for low red blood cell count (anemia), low white blood cell count (leukopenia), and low platelet count (thrombocytopenia)
  • Basic metabolic panel: looks for kidney function abnormality
  • Urine tests: look for additional kidney function abnormalities
  • Blood clotting tests: look for blood clotting abnormality
  • Antinuclear antibody test (ANA): looks for the presence of antibodies attacking normal cells and tissues 
  • Other specific antibody tests: look for additional antibodies attacking normal cells and tissues (anti-phospholipid antibodies, anti-double-stranded DNA, anti-Smith, and others) 
  • Complement tests: look for evidence of inflammation
  • Tissue biopsy: looks for evidence of tissue inflammation and damage, most commonly skin or kidney

The kidneys can be negatively affected by lupus without producing any symptoms. Routine basic metabolic panel and urinalysis tests provide important information about kidney function. Checking blood clotting tests evaluates for possible increased clotting risk that can cause conditions like miscarriage and stroke. Less frequently, decreased clotting ability can occur resulting in bleeding risk. A positive antinuclear antibody (ANA) test alone does not establish a diagnosis of lupus, but the ANA test is highly sensitive in identifying antibodies in 97% of people with lupus. A number of physical signs and symptoms combined with a positive ANA test increases the likelihood of the presence of lupus.

One physical sign, symptom, or abnormal lab test alone does not support a diagnosis of lupus. A certain number of physical signs and symptoms combined with abnormal lab tests collectively aid in establishing a clinical diagnosis of lupus. If you have experienced in the past or are currently experiencing more than one of these signs and symptoms, schedule a visit with your primary care provider to discuss your questions and concerns. 


Vicki Dishon, MHS, PA-C began her career as a physician assistant in rheumatology working with lupus patients. She recognizes the complexity of diagnosing lupus and the challenges people with lupus face in managing their symptoms.   


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Lupus, Diagnosing and Treating Lupus. Centers for Disease Control and Prevention.

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Lupus and the nervous system. Lupus Foundation of America, National Resource Center on Lupus.

Lupus Diagnosing and Testing. Lupus Foundation of America, National Resource Center on Lupus.  

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