Most often, lupus affects women who are between 15 to 45 years old, according to the Cleveland Clinic. However, lupus can develop at any age. Lupus that appears in people 50 years or older is called late-onset lupus. Late-onset lupus is less common, accounting for 2 percent to 20 percent of all lupus diagnoses.

Often, it can be hard for people 50 years and older to get a lupus diagnosis. One MyLupusTeam member shared how their suspicion of lupus was dismissed by a doctor: “I was 59 and I was diagnosed in February of 2019 by my endocrinologist. I suspected lupus around five years ago. I was ignored by my previous doctor at that time. I showed my current endocrinologist pictures of my hair loss. She decided to run a test.”

Here’s a look at what makes late-onset lupus unique, including its symptoms, potential issues with diagnosis, and management.

MyLupusTeam Members Diagnosed With Late-Onset Lupus

MyLupusTeam members have shared what led to their late-onset lupus diagnoses:

• “I was diagnosed with lupus 11 years ago. I was having a lot of pain all over my body. My foot doctor sent me to be tested for fibromyalgia, and the test came back negative for that but positive for lupus.”
• “I was just diagnosed this past spring at age 55. I had a rash on my face and uveitis in one eye. My eye doctor sent me to a dermatologist who did a blood test, and I tested positive ANA with lupus pattern. A couple of weeks ago I developed a rash on both arms. The dermatologist did a biopsy and found it’s cutaneous lupus. This is all very new to me, and I’m still trying to wrap my head around it. I also just learned about late-onset lupus.” (“ANA” stands for “antinuclear antibodies” — proteins made by the immune system that can be found in the blood of most people living with lupus.)
• “I was diagnosed at 49. I was having symptoms for a few years and didn’t know what was wrong. It took three different doctors before someone decided to run the blood test for lupus. I have lupus, fibromyalgia and Sjögren, all of which were diagnosed in the last three years.”

Early Onset vs. Late-Onset Lupus

Most people with lupus are diagnosed in adulthood. However, the diagnosis can come at any point in your life. A diagnosis may be referred to as early onset lupus or late-onset lupus, depending on at what age you’re diagnosed.

Early onset lupus is when lupus is diagnosed during childhood. About 15 percent to 20 percent of people with lupus were diagnosed in their childhood. Most researchers define late-onset lupus as lupus that first appears in someone 50 or older. However, no specific definition has been agreed upon. Some studies have proposed that late-onset lupus be defined as lupus that presents in people 65 or older.

Signs and Symptoms of Late-Onset Lupus

Late-onset lupus may present slightly differently compared with disease onset at a younger age. A 2023 study in the Mediterranean Journal of Rheumatology reported that the frequency of lupus symptoms varied between the two groups. The most common symptoms found in late-onset systemic lupus erythematosus (SLE) — the most common type of lupus — were arthritis, mouth sores, and fever. These symptoms were also common in those who were diagnosed younger. However, there were some signs of lupus that appeared less frequently in late-onset SLE, including:

• Malar rash (also called a butterfly rash)
• Hair loss
• Swollen lymph nodes
• Sensitivity to light

“I am 77 and just got diagnosed five months ago with late-onset lupus,” one MyLupusTeam member shared. “I started with mouth sores. Then major osteoarthritis pain. Fatigue can hit like a freight train!”

In addition, some health conditions caused by lupus were less common in people with late-onset lupus, such as:

• Raynaud’s phenomenon
• Nephritis (kidney inflammation)
• Anemia
• Seizures
• Psychosis

However, lung disease and serositis (inflammation in the tissues that surround body cavities) were reported to be more common in late-onset SLE.

Late-onset lupus starts more slowly. It causes fewer symptoms at first, but it can lead to more damage in the body’s organs over time. According to the same 2023 study, more men were diagnosed with late-onset lupus than with earlier-onset lupus.

Diagnosis of Late-Onset Lupus

Typically, lupus is diagnosed by ruling out other possible causes of symptoms. Your healthcare provider may perform a physical exam and some tests. Testing may include:

• Blood tests — To assess your immune function (white blood cell count) and check for infection and anemia (low level of red blood cells)
• Urine tests — To rule out infection and proteins or red blood cells that can indicate other more severe kidney conditions
• ANA test — To check for certain protein markers (autoantibodies) linked to lupus
• Skin, muscle or kidney biopsy — To examine tissue for damage
• Imaging tests — To rule out serositis (chest X-ray, cardiac ultrasound, or abdominal ultrasound) or to rule out inflammation in joints or tendons (joint ultrasound)

However, people who develop lupus later in life often deal with a delay in diagnosis. “I have had issues and felt sick for so many years and was not diagnosed until I was 63,” one MyLupusTeam member wrote. “My doctor said I was lucky that I went so many years without the diagnosis, although I was so sick for many years, and not one doctor could figure out what was wrong with me.”

Late-onset lupus can be hard to diagnose partly because older people may experience other health issues that can make it more difficult to identify lupus as the cause of symptoms. One review found that late-onset SLE was more likely to occur with other health conditions, such as:

• Sjögren’s disease
• High blood pressure
• Cardiovascular disease and peripheral vascular diseases
• Osteoporosis
• Cancer
• Diabetes
• Depression
• Thyroid disease

Studies have also found that some autoantibodies appear less often among people with late-onset SLE. This testing variable can further complicate diagnosis. One MyLupusTeam member shared their difficulty identifying lupus symptoms: “The catch is, when I get a new pain [I don’t know] if it’s old age setting in or lupus."

Treatment of Late-Onset Lupus

In general, there aren’t a lot of differences in how late-onset lupus is managed. The overall treatment goal is still to reduce symptoms and achieve remission.

No matter the age of onset, you should work with your rheumatologist to find a treatment plan that addresses your symptoms. Your provider may suggest disease-modifying antirheumatic drugs (DMARDs) for slowing the disease progression and nonsteroidal anti-inflammatory drugs (NSAIDs) for pain or swelling. Corticosteroids are sometimes used to reduce inflammation. However, the American College of Rheumatology recommends reducing the use of certain steroids when managing SLE.

Late-onset lupus tends to co-occur with other conditions. Treatment of late-onset lupus should aim to manage and prevent other health conditions. Reducing steroid use can help to lower the risks of diabetes, high blood pressure, osteoporosis, and mood disorders.

Research has suggested there may be lower disease activity in late-onset lupus. As a result, some studies found less frequent need for some biologics in people with late-onset SLE compared with early onset.

Listen to Your Body

Talk to your doctor if you notice any new symptoms that could point to lupus. Though late-onset lupus can be hard to diagnose, talking to your provider about your symptoms is the first step. Follow up with your doctor on any tests. You are your best advocate. Remember that lupus can affect any part of your body and result in a variety of symptoms. That means it’s important to tell your doctor about anything unusual you experience.

Talk With Others Who Understand

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

Were you diagnosed with late-onset lupus? What symptoms did you experience leading up to your diagnosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.