No single test can diagnose lupus, but a collection of tests can rule out other disorders. This process can take months or years and may require self-advocacy.
Lupus is a chronic autoimmune condition that causes symptoms such as joint pain, fatigue, and skin lesions. The condition can be difficult to diagnose because these symptoms are shared with many other conditions. Often, getting a diagnosis can take years and can be frustrating for people experiencing lupus symptoms.
There’s no single test that can confirm a diagnosis of lupus. Instead, a doctor will want to start by discussing your symptoms. You’ll go over your medical history and over any conditions, especially autoimmune conditions, that run in your family.
You’ll also have a complete physical exam so a doctor can examine your skin for skin lesions and rashes caused by lupus. If the doctor thinks lupus is likely, they’ll order tests.
This might include:
- Urine tests: Urine tests can be performed to look for protein, blood, and other cells in the urine. If present, this may indicate inflammation of the kidneys from lupus.
- Blood tests: Blood tests can look for levels of blood cells, proteins, and antibodies in your blood. Many people with lupus have an antibody called the antinuclear antibody (ANA) in their blood. A positive ANA test doesn’t always mean a person has lupus, but it helps doctors get closer to confirming a diagnosis.
- Skin biopsy: A skin biopsy is a procedure that will remove a small sample of tissue from a lesion on your skin. This sample will be studied in a lab for signs of lupus. This may not be needed if you have the typical “butterfly rash” that’s often seen in those with lupus.
- Kidney biopsy: Sometimes, a kidney biopsy is performed so that kidney tissue can be seen up close and inspected for signs of autoimmune disease.
There are four types of lupus:
- Systemic lupus erythematous (SLE): SLE causes chronic inflammation throughout and is the most common type of lupus.
Over 70%of all lupus cases are SLE. Typically, when people use the term “lupus,” they’re referring to SLE.
- Drug-induced lupus erythematosus: Drug-induced lupus erythematosus is a temporary form of lupus caused by certain medications. Most of the drugs that can cause drug-induced lupus erythematosus are prescribed less commonly today than in the past.
- Neonatal lupus erythematosus: Neonatal lupus erythematosus is a condition passed on in the womb. However, children with neonatal lupus erythematosus are at increased risk of heart block and other serious heart conditions.
- Skin lupus: There are three types of skin lupus, listed below. Most people with acute cutaneous lupus erythematosus (ACLE) have SLE. A butterfly rash is a symptom of facial ACLE that appears as redness in the region of the cheeks and nose but spares the nasolabial fold.
- chronic cutaneous lupus erythematosus (CCLE)
- acute cutaneous lupus erythematosus (ACLE)
- subacute cutaneous lupus erythematosus (SCLE)
Diagnosing can vary depending on the type of lupus a person has. A wide variety of criteria are considered during a lupus diagnosis. The
These criteria look at the health of your organs, muscles, blood, and more. Each category receives a score, and the total score determines the probability of having lupus. These criteria are guidelines and not absolute for diagnosis.
ANA antibodies, autoimmune damage to the skin and kidneys, and a history of lupus symptoms are generally enough to confirm a diagnosis. CCLE is typically diagnosed after a skin biopsy.
Tests such as biopsies won’t help determine whether a skin lesion is caused by SLE or drug-induced lupus erythematosus.
However, if you’re taking a medication with a known link to drug-induced lupus erythematosus, part of the diagnostic process might be stopping that medication. If your symptoms stop, it can confirm that diagnosis and resolve your drug-induced lupus erythematosus.
Neonatal lupus erythematosus is rare, but today, at-risk pregnancies, such as pregnancies of women who have SLE, can be monitored closely. Neonatal lupus erythematosus can often be diagnosed before birth.
An unborn baby can be monitored in the womb, and further testing can be done if a weak heartbeat is detected. Treatment can be given before birth or immediately after birth to reduce the risk of heart-related complications.
An unborn baby’s heart can be monitored in the womb with echocardiograms, and the birth-parent’s blood can be tested for anti-Ro/SSA and anti-La/SSB antibodies to confirm the diagnosis if a weak heartbeat has been detected.
It’s most common for lupus to begin and be diagnosed when someone is between 15 and 44 years old. However, some people with SLE are diagnosed with what’s known as late-onset lupus. Late-onset lupus symptoms typically begin at around age 59. Symptoms can be vague and easy to mistake for simple symptoms of aging.
Even doctors sometimes mistake late-onset lupus for types of arthritis or other autoimmune conditions. However, the overall diagnostic process is the same. Your symptoms, along with urine testing, bloodwork, and biopsies, will all be part of confirming a diagnosis.
You can learn more about the process of confirming a lupus diagnosis by reading the answers to some common questions.
How long does it take to diagnose lupus?
Healthcare professionals sometimes call lupus an “imitator” because its symptoms look like those of so many other conditions. This makes lupus very difficult to diagnose and can drag out the process. It often takes a long time to get a lupus diagnosis.
There can be years between the first lupus symptom appearing and the final diagnosis being confirmed.
How hard is it to diagnose lupus?
It’s difficult to diagnose lupus. There’s no one test that can prove lupus, and its symptoms are shared with many other chronic conditions. Doctors might need to rule out several possibilities before determining whether lupus is the answer.
A primary care doctor may be able to order an ANA screening test, but referral to a rheumatologist will be important to confirm the diagnosis. Don’t be afraid to advocate for yourself if you’re unable to get testing for lupus.
What can trigger lupus?
An illness or environmental trigger is typically what first sets off lupus. These things can also cause lupus flare-ups. Triggers are individual and can vary from person to person. However, there are some commonly reported triggers. These include:
- serious injuries
- infections, including colds and flu
- mental stress and grief
- physical stress and trauma
- giving birth
- exposure to ultraviolet (UV) rays
- taking medications that increase your sensitivity to UV rays, such as Bactrim, Septra, Orinase, Minocin, and Azulfidine
- Taking certain antibiotics, including penicillin, amoxicillin, cloxacillin, and ampicillin
Who is most likely to get lupus?
Anyone can get lupus, but there are known risk factors that are linked to the condition. These include:
- being female
- being in your 20s or 30s
- being African American
- having a family history of lupus
- having a family history of any autoimmune disease
While most of the people that get lupus are female, males tend to get especially severe forms of the disease.
What happens if lupus is left untreated?
Lupus causes inflammation throughout the body. Untreated, this can cause damage and serious health complications. These include:
- inflammation of the kidneys, lungs, and lung and heart lining
- leg swelling and liver swelling
- heart disease and heart failure
- high blood pressure
- joint inflammation and deformities of the hands
- anemia, which can cause a drop in red and white blood cell counts as well as in platelets
- severely low platelet counts can increase the risk of internal bleeding as well
- pregnancy complications, including blood clots during pregnancy and an increased risk of pregnancy loss
- blood clots (thrombosis) outside pregnancy
- difficulty swallowing and dry mouth
- indigestion, nausea, and intestinal inflammation
- difficulties with urination
- difficulty concentrating, slowed cognition, and memory loss
- anxiety and depression
- personality changes
- seizures or strokes
Living with lupus
Lupus is a chronic condition. It’s important to have support from other people who understand what it takes to manage lupus. But there are many great resources you can turn to.
- The Lupus Foundation of America: The Lupus Foundation of America can help connect you with support in your local community, financial assistance, and answers from health educators.
- Lupus Research Alliance (LRA): The LRA is an advocacy and research group dedicated to finding a cure for lupus. They also host a community forum where you can chat with other people managing lupus.
- The Autoimmune Association: The Autoimmune Association is a great resource for anyone with an autoimmune condition. Their resource center can help you find a doctor, find a support group, adjust to life after diagnosis, learn about your condition, and more.
- The American Association of Kidney Patients (AAKP): The AAKP offers resources, advocacy, and support for anyone with a condition that affects their kidneys, including people living with lupus.
Lupus can be very difficult to diagnose because the condition has symptoms that overlap with others. This can make lupus present as a different condition and can delay the diagnostic process.
Additionally, there’s no single test that can diagnose lupus. Instead, a physical exam, urine test, blood test, and biopsy will all be looked at together to confirm a diagnosis. In some cases, this can take years of trial and error as other conditions are eliminated as possibilities.
If lupus is suspected, it’s important to see a rheumatologist as soon as possible to confirm the diagnosis. Medications that reduce the overactive immune response in lupus can then be prescribed. It’s important to start treatment as early as possible to avoid long-term complications like organ damage.