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I was referred to a Rheumatologist earlier this year due to all my symptoms: constant fatigue, getting sick all the time by every little thing, having unexplained fevers, having constant joint pain, swollen joints, digestive issues, nausea, sensitivity to light, erratic menstruation cycles, chest pain, uptick in my migraines, being in a brain fog, coldness in extremities, etc. I already had been diagnosed with fibromyalgia and osteoarthritis, but my Dr. was suspicious that I might I have Lupus so he ordered an ANA (antinuclear antibody) test.

My test result is seen below: Abnormal 1:160. My WBC was also soaring, but, my Dr. was undecided on whether or not to diagnose me with Lupus -- though the laboratory technicians had recommended the diagnosis.

So is a positive 1:160 ANA test result still considered ambiguous for diagnosis Lupus? He labeled me border-line Lupus. Is that a real thing? What other diagnostic testing is needed to diagnosis definitively that I have or do not have Lupus?

Or should I see a different rhematologist?

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Your doctor may use the term "possible lupus" if you meet part, but not all of the diagnostic criteria for lupus [1]. I'm assuming in the remainder of this post that you do not meet criteria for "probable" lupus (>= 4 criteria including 1 clinical and 1 immunologic criteria).

A positive ANA is considered 1 immunologic criteria for the diagnosis of lupus. The general expert consensus is that to be considered "possible lupus," you need at least one criteria plus at least two other features that may be associated for, but are not specific for SLE [1]. These may include (along with some associated symptoms):

  • Optic neuritis (loss of vision, blurry vision, loss of color perception)
  • Aseptic meningitis (stiff neck, nausea, vomiting, headache, abnormal lumbar puncture)
  • Glomerular hematuria (blood and protein in urine seen under microscope)
  • Pneumonitis, pulmonary hemorrhage, or pulmonary hypertension, interstitial lung disease (shortness of breath, coughing up blood, abnormal pulmonary function tests, abnormal chest CT scan, abnormal heart echo)
  • Myocarditis (chest pain, shortness of breath, abnormal heart echo), verrucous endocarditis (complex manifestations, diagnosed on heart echo)
  • Abdominal vasculitis (may manifest as severe acute attacks of abdominal pain)
  • Raynaud phenomenon (fingers or toes becoming vividly white when exposed to cold)

Note that all of these symptoms are extremely non-specific and all have causes that are much more common than those listed above, e.g. the overwhelming majority of patients with headaches and abdominal pain and shortness of breath do not have lupus, since those are all symptoms commonly experienced by the general population.

To answer your questions: yes, "borderline lupus" (possible lupus) is a real thing. Further tests to rule out probable lupus would include a complete physical exam; complete blood count; urinalysis; anti-DNA, anti-Smith, and antiphospholipid antibodies; complement levels; and a direct Coombs test.

Patients with "possible lupus" may or may not progress to eventually have "probable lupus." Your doctor may discuss potential treatment strategies to prevent progression depending on your symptoms and the rest of your evaluation.

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