If you’ve been told you have borderline lupus, you may wonder what it means and how it’s different from the more common type of lupus. Autoimmune diseases like lupus (systemic lupus erythematosus, or SLE) are not always easy to diagnose. An autoimmune disease is a condition in which the body’s immune system mistakenly attacks its own healthy cells and tissues, causing inflammation. Here’s what you need to know about borderline lupus, so you can figure out what it means for you.

What Is Borderline Lupus?

People may be told they have borderline lupus when they have some of the signs and symptoms of lupus but do not fulfill enough criteria to confirm the diagnosis. For example, someone may have high levels of blood agents that indicate lupus, like the anti-nuclear antibody (ANA), which is part of your immune system, but they may not have other signs and symptoms that would complete the diagnosis.

A rheumatologist is a doctor who specializes in diagnosing and treating diseases and conditions that affect the joints, muscles, and bones. They may use the terms “incomplete” or “undifferentiated” to describe someone who has signs and symptoms of lupus but not enough for a diagnosis.

People with borderline lupus may have fewer symptoms and less severe symptoms than those with SLE. One study found that individuals with borderline lupus do not experience symptoms affecting major organs and have lower levels of certain lupus indicators in their blood compared to those diagnosed with the classic form of lupus.

Does Borderline Lupus Become the Classic Form of Lupus?

Some people with borderline lupus will go on to develop SLE. This usually happens within the first five years after being assessed as borderline. In one study from Abu Dhabi, no one with borderline lupus progressed to SLE after being followed for an average of two years. However, those researchers noted that a longer follow-up time is needed to determine whether that might happen later.

At MyLupusTeam, people have had both experiences. One shared, “On Friday, I finally got a diagnosis of lupus. I have been borderline for two years and have probably had it since I was in my 40s.”

Others have experienced borderline lupus for years without having it develop into classical lupus. One member said, “I have had borderline lupus for over 30 years,” and another added, “I have had borderline lupus for almost 50 years.”

It’s impossible to know if borderline lupus will progress into certain lupus. If you have been told you have borderline lupus, follow up with your health care provider to keep an eye on your disease and its progress.

How Is Lupus Diagnosed?

Lupus can be difficult to diagnose. Blood and other laboratory tests are not absolute indicators, as some lupus indicators may also be present in people without the condition.

At least one MyLupusTeam member has experienced this. They said, “I was diagnosed with lupus years ago and then told, ‘No, you’re borderline,’ and recently I had a positive test result and was told, ‘Yes, you do have mild lupus.’”

According to the American College of Rheumatology, 11 specific criteria need to be fulfilled to diagnose SLE:

• Mouth sores
• Malar rash (butterfly rash across the face)
• Photosensitivity that causes a rash from sun exposure
• A discoid skin rash, with round sores or ulcers that are usually on the head
• Serositis (inflammation in the lining of the heart and lungs)
• Joint pain and swelling
• Nervous system and brain problems, ranging from losing touch with reality to seizures
• Disorders connected to your blood, like anemia
• Problems with the kidneys
• Positive ANA test result
• Other unusual antibody lab tests

People who meet four or more out of these 11 criteria meet the diagnosis of lupus. If you have fewer than four criteria, you may be classified as borderline lupus.

To complicate things even more, sometimes people can have lupus and not have four of these indicators. Your rheumatology team will complete a thorough evaluation, including a physical examination and blood tests, then use their knowledge of the condition to make the final diagnosis. They may also choose to evaluate you over time to see if anything changes. Individuals with borderline lupus need to be monitored closely, as they may develop full-blown lupus over time. Regular follow-up, symptom management, and lifestyle adjustments are typically recommended to maintain optimal health and well-being for those with borderline lupus.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you living with borderline lupus? Share your experience in the comments below, or start a conversation by posting on your Activities page.