Lupus can be hard to diagnose because it has many symptoms that are often mistaken for symptoms of other diseases. Many people have lupus for a while before they find out they have it.
Lupus can take a long time to diagnose for a number of reasons: Some patients experience symptoms that come and go. Others might have a slow progression, where they first experience one symptom and others develop over time.
Even more striking are results from a study of 2527 patients with lupus in the UK that showed an average delay in diagnosis of over 6 years, and that 47% of respondents were originally misdiagnosed.
Lupus nephritis can also cause high blood pressure (hypertension). If left untreated, it can put you at risk of developing life-threatening problems such as a heart attack or stroke.
A tell-tale sign of lupus is a butterfly-shaped rash across the cheeks and bridge of the nose. Other common skin problems include sensitivity to the sun with flaky, red spots or a scaly, purple rash on various parts of the body, including the face, neck, and arms. Some people also develop mouth sores.
In chronic illnesses like lupus the following may occur: Symptoms come and go for months or years before a diagnosis is certain. Laboratory tests may change over the course of treatment. You may not know for months whether a prescribed treatment works; it may not work, and it may be necessary to try another medication.
98% of all people with systemic lupus have a positive ANA test, making it the most sensitive diagnostic test for confirming diagnosis of the disease. The test for anti-nuclear antibodies is called the immunofluorescent antinuclear antibody test.
Fever — Many people with lupus get fevers when their disease flares. Fever is defined as a temperature over 100°F (37.8°C). Muscle pain — Muscle pain or tenderness is common in people with lupus; rarely, some people also notice muscle weakness. Weight changes — Lupus can sometimes cause weight loss or weight gain.
If you have lupus, you may have times of more symptoms (flares) and times of feeling better (remission). Lupus flares can be mild to serious, and they do not follow a pattern. However, with treatment, many people with lupus can manage the disease.
There are no definitive tests used to identify a condition, or the diagnosis cannot be confirmed until a patient has died (upon autopsy). In these cases, healthcare providers must use combinations of symptoms, often vague ones, which can lead to a lack of diagnosis. The real medical problem may be highly unusual.
Some of the most common signs of lupus are a rash and joint pain, says Konstantinos Loupasakis, MD, a rheumatologist with MedStar Washington Hospital Center, but symptoms can also include fatigue, hair loss, mouth sores, and fever. “There's a great range of manifestations we see with lupus,” he says.
That's because many autoimmune diseases have similar symptoms. And some symptoms, such as muscle aches, are common in many other illnesses. So it can take a long time and some visits to different types of doctors to get a diagnosis. Learn about the health conditions in your family history.
“Some people may shrug things off [not knowing] the cause is active lupus, or attribute symptoms to their lupus when it's something else entirely,” Schur says. “When in doubt, call your doctor.”
Common triggers include:
Being out in the sun or having close exposure to fluorescent or halogen light. Infection. Injury. Stopping your lupus medicines.
Kidneys About one half of people with lupus experience kidney involvement, and the kidney has become the most extensively studied organ affected by lupus. Lungs About 50% of people with SLE will experience lung involvement during the course of their disease.
Common symptoms include fatigue, hair loss, sun sensitivity, painful and swollen joints, unexplained fever, skin rashes, and kidney problems. There is no one test for SLE. Usually, your doctor will ask you about your family and personal medical history and your symptoms. Your doctor will also do some laboratory tests.
A doctor may use the phrase "borderline lupus" when symptoms or blood test results suggest lupus, but there is not enough information for a definite diagnosis.
On average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms. A majority (63%) of people with lupus surveyed report being incorrectly diagnosed.
Lupus often causes skin rashes, arthritis, mouth sores, sun sensitivity, hair loss, or kidney problems, but these symptoms don't show up in MS. Even when lupus affects your nervous system, its most common symptoms are migraine, personality changes, seizures, or stroke, but these aren't typical for MS.
Systemic Lupus Erythematosus (SLE), also known as lupus, is a disease of the immune system, which is estimated to affect more than 20,000 people in Australia and New Zealand. Symptoms can be vague and vary between people, and therefore diagnosis can be difficult.