Lupus is a complex disease that can be difficult to diagnose. In many cases, lupus may appear to be different condition, such as rheumatoid arthritis. Fortunately, today's tools for diagnosing the disease are more accurate than ever before.
Diagnosing lupus, or systemic lupus erythematosus, involves more than one little test. Doctors have to use a combination of tools and information to diagnose the disease.
Certain symptoms, such as the distinct butterfly-shaped face rash, are extremely common among lupus patients. However, this rash does not occur in all cases.
Through working with your doctor and paying attention to your body, you may be able to spot lupus early. Even though there is no cure for lupus, there are many ways to manage the disease. The sooner you spot lupus, the sooner you can start controlling your symptoms.
Why is lupus hard to diagnose?
Lupus is hard to diagnose for a variety of reasons.
First, lupus shares symptoms with many other diseases. It can look like rheumatoid arthritis, psoriasis, and other autoimmune diseases.
Secondly, lupus affects a number of systems throughout the body. As such, a doctor has to see symptoms in many parts of the body and lab test results that show a disease affecting multiple body systems before a diagnosis can be made.
Lupus is also hard to diagnose because it does not develop quickly. It takes time for symptoms to develop. Even once symptoms develop, they can come and go. Over time, symptoms may eventually build up to the point that a doctor can spot a multi-system disease like lupus.
Lastly, lupus is hard to spot because there is not a single test to diagnose the disease. In some cases, tests can show that a person has lupus even if they do not have the disease yet.
How is lupus diagnosed?
There is no one way to tell if someone has lupus. Doctors diagnose the disease by looking at a combination of laboratory test results, signs and symptoms, and physical exam results.
Blood and Urine Tests
Antinuclear antibody (ANA) test:
Antinuclear antibodies are made by your immune system. When the ANA test shows that you have these antibodies, it means your immune system is stimulated. Most lupus patients get positive results on their ANA test. However, most people with positive ANA results do not have lupus. If your ANA test shows a presence of these antibodies, your doctor will likely suggest further testing.
Complete blood count:
In a complete blood count, your doctor is looking at the number of red blood cells, white blood cells and platelets in your blood. Your doctor is also measuring your levels of hemoglobin, a protein in red blood cells.
A complete blood count may show that you have anemia, a condition that is common among lupus patients. Patients with lupus also often have a low white blood cell or platelet count.
Erythrocyte sedimentation rate:
This is another type of blood test. It measures how quickly your red blood cells sink to the bottom of a tube in one hour. If your red blood cells settle to the bottom more rapidly than normal, it may mean you have lupus. However, a fast sedimentation rate may also mean you have another inflammatory disease, cancer, or infection.
Kidney and liver tests:
Because lupus can affect many organs throughout the body, your doctor may test these organs. Blood tests that measure the function of your kidneys and liver are common.
One sign of kidney damage is high levels of protein in your urine. Your doctor may conduct a urine test to see if you have kidney damage related to lupus.
Your doctor may take an x-ray of your chest to see if lupus is affecting your lungs. An x-ray image can show abnormal shadows, which may indicate fluid or inflammation in your lungs.
In order to see if lupus has affected your heart, your doctor may use an echocardiogram. This imaging test uses sound waves to make a real-time image of your heart. It can let your doctor know if your valves and other parts of the heart have been affected.
Signs and Symptoms of Lupus
Lupus can only be diagnosed when your doctor has run a number of tests results and has spotted numerous symptoms.
Lupus affects each patient differently. Some people are mildly affected, while others have severe symptoms, which can come and go over time. Some symptoms are more common than others.
Common symptoms of lupus include:
- swollen joints
- unexplained fever
- malaria rash, or butterfly-shaped rash on the face
- skin lesions that are sensitive to sunlight
- Raynaud's phenomenon, or fingers and ties that become white or blue when you are stressed or in the cold
- shortness of breath
- chest pain
- memory loss
- dry eyes
In some patients, lupus affects only one system of the body, such as the skin or joints. In other patients, the disease causes symptoms throughout the body. For example, lupus can lead to kidney damage, lung inflammation, and other problems with the cardiovascular and central nervous systems.
The common symptoms of lupus are often spotted around the time of diagnosis. The signs and symptoms of damage to other bodily systems, however, can take years to develop.
Lupus patients can suffer from nephritis, or the inflammation of the kidneys. Nephritis weakens the kidneys' ability to rid the body of waste products, which can lead to serious health problems.
Patients often feel no pain when their kidneys are affected by lupus. Some signs of kidney inflammation include dark urine and swollen eyes, legs, ankles, or fingers. In many cases, the only way to tell if a patient has kidney disease is through a urine or blood test.
Your kidneys are vital to your health. As such, if you have kidney damage from lupus, you may need in-depth drug treatment.
Some lupus patients develop a condition called pleuritis, an inflammation of the lining of the lungs and chest. Pleuritis causes chest pain, especially when you cough or take a breath.
Lupus patients are also at risk of pneumonia, a type of lung infection.
Central Nervous System Problems
The central nervous system (brain and spinal cord) can be affected by lupus. This can lead to headaches, dizziness, memory loss, eye problems, seizure, stroke, depression, and changes to behavior.
Lupus is also associated with problems of the heart, blood, and blood vessels.
Some lupus patients experience myocarditis and endocarditis, conditions in which the heart itself becomes inflamed. Endocarditis can make the heart valves become thicker, leading to heart murmurs.
Other patients may experience pericarditis, or inflammation of the layer around the heart. This condition causes chest pain and other symptoms.
The blood itself can be affected by lupus. Some patients experience anemia, a condition in which the body does not have enough red blood cells. These cells carry oxygen throughout the body.
Another blood condition associated with lupus is thrombocytopenia, a condition that lowers platelets in the blood. Platelets help in blood clotting.
Lupus also affects the blood vessels, or the carriers of blood throughout the body. Vasculitis (inflamed blood vessels) and atherosclerosis (hardened or narrowed arteries) are two of the more common blood vessel problems in people with lupus.
What do I do if I have been diagnosed with lupus?
Once you and your doctor are convinced you have lupus, it is time to start treating the disease.
Most people with lupus take some sort of medication to control their symptoms. Depending on the type and severity of your symptoms, you may take any medications ranging from Advil or Motrin to antimalarial drugs (drugs originally made to treat malaria but also treat other diseases) and immunosuppresive drugs (drugs made to calm an overactive immune system).
If you are diagnosed with lupus, you may also need to make some lifestyle changes. You should get enough rest and try not to have an overly busy and stressful schedule. Stress can lead to flares, or periods in which symptoms become worse.
A healthy diet and regular exercise also can help prevent flares.
When it comes to treating and living with lupus, it is important to keep an open conversation with your doctor. Be aware of your symptoms and let your doctor know if you experience any changes.