Diagnosing lupus can be challenging. There isn’t just 1 test that can give doctors a “yes” or “no” answer. Sometimes, it can take months — or even years — before doctors have all the information needed to make a lupus diagnosis.
If your doctor thinks you could have lupus, she’ll ask you to answer questions about your symptoms, your medical history, and your family medical history. You may also have different kinds of tests. Making a lupus diagnosis is kind of like putting together a puzzle — each answer or test result is like a puzzle piece. When enough of the pieces fit together, you may be diagnosed with lupus.
Here’s what you need to know about diagnosing lupus:
What are the symptoms of lupus?
Because lupus can cause inflammation (swelling) in many different parts of the body, it can cause a lot of different symptoms. Symptoms may come and go — and they can change. Many people with lupus don’t have all the symptoms, and many lupus symptoms can have other causes.
Your doctor will ask about symptoms like:
- Fatigue (feeling tired often)
- Painful or swollen joints
- Swelling in the hands, feet, or around the eyes
- Low-grade fever
- Sensitivity to sunlight or fluorescent light
- Chest pain when breathing deeply
What questions will my doctor ask?
If your doctor thinks you might have lupus, he’ll usually start by asking you questions about your symptoms. For example:
- What symptoms are you having?
- How often do you have these symptoms?
- When did your symptoms start?
- Does anything make your symptoms better or worse?
- Are your symptoms constant or do they come and go?
- Do your symptoms get worse at a certain time of day?
- Do your symptoms get in the way of your daily routine?
It can be helpful to think through the answers to these questions ahead of time — try writing down your answers and taking them with you to your appointment. You can also complete this symptom checklist.
Your doctor may also ask you if anyone in your family has had lupus — or another autoimmune disease (where the immune system attacks healthy tissue). That’s because people who have a family member an autoimmune disease may be more likely to develop lupus.
Keep in mind that different kinds of health care professionals — like nurses, physical therapists, or primary care doctors — may play a role in helping to diagnose lupus.
What types of tests can help diagnose lupus?
Your doctor might give you different lab tests to help find out if you have lupus — or a different condition. While no single test can diagnose lupus, tests help doctors check for changes in your body that could be caused by lupus.
Blood tests can help doctors see things like how your immune system is working, or if there are signs of inflammation (swelling) in your body.
You may have blood tests, like:
- A complete blood count (CBC) to measure the numbers of red blood cells, white blood cells, and platelets (cells that help blood clot) in your blood
- Antibodies tests to find out if your immune system is attacking your body
- Blood clotting time tests to see if you have clotting problems that could be from lupus
- Complement tests to check for signs of inflammation
Urine tests can help doctors see if there are any problems with your kidneys. Your doctor may test your urine just once — or many times to check for changes.
Doctors may remove a small piece of tissue (what our organs are made of) from different parts of your body — like your skin. Then they can check tissue to see if there are any signs of inflammation and damage