Hearing the diagnosis of lupus for the first time can make your world stand still and make your head spin. What does this mean? How do I tell my family? Why is this happening to me?

By the time your doctors have a conclusive diagnosis of lupus they have already learned many things about your health and lifestyle. Their recommendations will help you with the “next steps” in managing lupus. The good news is now you can start treating the disease and not just reacting to the symptoms.

diagnosisThe onset of lupus may be acute, resembling an infectious process, or it may be a progression of vague symptoms over several years. The progression of the disease can vary from person to person. As a result, diagnosing SLE is often a challenge.

Lupus is a very difficult disease to diagnose. A thorough medical examination by a doctor familiar with lupus is essential to an accurate diagnosis. This must include a complete medical history and physical examination, laboratory tests and a period of observation. Making a correct diagnosis of lupus requires knowledge and awareness on the part of the doctor and good communication on the part of the patient. The doctor, nurse, or other health professional assessing a patient for lupus must keep an open mind about the varied and seemingly unrelated symptoms that the patient may describe. For example, a careful medical history may show that sun exposure, use of certain drugs, viral disease, stress, or pregnancy aggravates symptoms, providing a vital diagnostic clue.

Because lupus rarely presents itself the same way in any two people, it is very challenging for those in the medical profession to understand, diagnose and properly treat the disease. Often a diagnosis can be long in coming, which can be extremely frustrating for both the patient and physician alike.

No single laboratory test can definitely prove or disprove SLE. Lupus is usually easier to diagnose when the individual has many of the more characteristic symptoms and signs, but is made more difficult if none or only a few are present. Laboratory tests are usually conducted to help confirm or reject the diagnosis. These tests may include a blood count (CBC), looking for low number of white blood cells, red blood cells and/or platelets. The urine is examined for protein and red/white blood cells. Blood tests may be done to measure kidney function. A variety of laboratory tests, X rays and other diagnostic tools are used to rule out other pathologic conditions and to determine the involvement of specific organs. It is important to note, however, that any single test may not be sensitive enough to reflect the intensity of the patient’s symptoms or the extent of the disease’s manifestations. To see a full list and explanation of the blood tests your doctor may give you in order to make a lupus diagnosis, click here. 

Some tests are used less frequently but may be helpful if the cause of a person’s symptoms remains unclear. The doctor may order a biopsy of the skin or kidneys if those body systems are affected. Some doctors may order a test for anticardiolipin (or antiphospholipid) antibody. The presence of this antibody may indicate increased risk for blood clotting and increased risk for miscarriage in pregnant women with lupus. Again, all these tests merely serve as tools to give the doctor clues and information in making a diagnosis. The doctor will look at the entire picture—medical history, symptoms, and test results—to determine if a person has lupus.

The American College of Rheumatology (ACR), an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles, has developed and refined a set of diagnostic criteria. If at least 4 of the 11 criteria develop at one time or individually over any period of observation, then the person is likely to have SLE. However, a diagnosis of SLE can be made in a person having fewer than four of these symptoms.

ACR Criteria for Diagnosing SLE

  • Malar rash (Butterfly shaped rash across the cheeks and nose)
  • Discoid rash
  • Photosensitivity
  • Oral ulcers (usually found in the mouth or nose)
  • Arthritis
  • Serositis (pleuritis or pericarditis)
  • Renal disorder (persistent proteinuria or cellular casts)
  • Neurological disorder (seizures or psychosis)
  • Hematologic disorder (anemia, leukopenia or lymphopenia on two or more occasions, thrombocytopenia)
  • Immunologic disorder (positive LE cell preparation, abnormal anti-DNA or anti-Sm values, false-positive VDRL syphilis test)
  • Abnormal ANA titer

Source: Lupus Alliance of  LIQ, National Institute of Health