Patients who exhibit lupus-like symptoms but haven’t met benchmarks that would lead to a lupus classification haven’t been studied sufficiently. And there is a gap between classification and treatment, meaning there hasn’t been enough focus on how to treat those incomplete lupus erythematosus (ILE) patients. That’s according to a new study published late last month in Arthritis Care & Research. “One of the most common reasons that a patient is referred to a rheumatologist is having positive blood markers, which is called autoantibodies or a positive ANA, and some non-specific symptoms like joint pain, muscle pain, fatigue, rashes or Raynaud’s,” says Judith James, the study’s corresponding author.

Although some ILE patients exhibit symptoms that look like lupus, they don’t meet the full requirements for classification of systemic lupus erythematosus (SLE). “These individuals have signs and symptoms, which have a negative impact on their quality of life, but are very understudied and we don’t understand why some of these people will go on later to develop SLE and others will persist (or resolve) these more limited symptoms,” says Dr. James, the chair of the arthritis and clinical immunology program and of biomedical research at Oklahoma Medical Research Foundation.

The study, which examined 440 ILE patients and 3,397 SLE patients, has several takeaways for patients who don’t meet lupus classification:

  1. Even if you don’t meet SLE classifications, your symptoms are real. “You need evaluation and potential treatment for the symptoms, and potentially for the underlying dysfunction of your immune responses,” Dr. James says.
  2. 2. If you’ve been identified as having either incomplete lupus or undifferentiated connective tissue disease, you might need to have specialists follow you over time to ensure that you don’t develop new symptoms.
  3. There are prevention trials already underway, as well as on the horizon, for these conditions. You or your family members, who have at least one symptom and specific blood markers, might be candidates for research.

“These types of studies will allow us to test therapies in these syndromes in a controlled way to identify the best medicines for future patients,” Dr. James says, “but also to better understand how the symptoms progress and perhaps how to better treat them.”

Future research will examine several questions that remain unanswered, including what genetic factors and what environmental exposures predispose patients to incomplete lupus, and what genetic, environmental, and hormonal factors lead patients with incomplete lupus to develop SLE classification and major organ involvement, Dr. James says. A MedPage writeup of the study quotes an editorial accompanying the study by David Daikh, of University of California San Francisco, and Karen Costenbader, of Harvard Medical School. “Complicated interactions between genes and environment differentiate individuals’ courses in the development of autoimmune diseases such as SLE,” the doctors wrote. “Studying these intermediate patients as they evolve may shed light on the extremely important clinical problem of ‘ruling out SLE’ and provide answers to some of these questions.”