Lupus is usually diagnosed by a rheumatologist – a doctor that specialises in the immune system, joints, and connective tissues of the body. You have to be referred to a rheumatologist by a GP.

A rheumatologist will use a set of criteria to diagnose lupus, including considering your symptoms, medical history, and test results (see more information below).

Some people with lupus experience mostly skin-related symptoms, and so may be referred to a dermatologist, who is also able to diagnose the condition.

If you think you have lupus, you should book to see your GP. They will be able to refer you to a rheumatologist if your symptoms suggest you may have an autoimmune condition like lupus.

There may be certain criteria for a referral to rheumatology depending on where you are in the country. You may be asked to rebook an appointment with your GP once you have been experiencing the symptoms for a set amount of time (eg 4 weeks). This helps the GP to understand how likely it is that you are experiencing a long-term condition and helps rule out illnesses that may resolve themselves sooner. The GP may also do some tests first before they refer you.

There isn’t one specific test that can say for certain if you have lupus or not. This is why a rheumatologist looks at your test results, symptoms, and medical history all together to make a diagnosis.

• Blood tests – doctors will look at specific blood markers like ANA and anti-dsDNA (see below) when considering a diagnosis of lupus
• Urine tests – about 1/3 people with lupus have kidney involvement, so doctors will want to look at the levels of blood and protein in the urine
• Other tests – doctors may also request other tests like x-rays, MRI scans, CT scans or biopsies if there is organ involvement

There is no genetic test for lupus.

If you want to learn more about the tests used in diagnosing lupus, check out Dr Arvind Kaul’s presentation here.

ANA and ds-DNA tests are blood tests often done to help diagnose lupus.

ANA (antinuclear antibodies) is a blood marker that is present in most patients with lupus (95%, or 9.5 out of 10). However, a positive ANA result does not mean that you have lupus. It can be positive in individuals without health conditions, with 1 in 10 people with no health conditions (10%) having a positive ANA test. It can also be positive in other autoimmune conditions like polymyositis and rheumatoid arthritis. This means your ANA test result must be considered alongside the symptoms you are experiencing. For example, having a positive ANA test but no symptoms makes lupus less likely. An ANA test is often done by your GP before they refer you to rheumatology.

Anti-dsDNA (anti-double stranded DNA antibodies) is a blood marker that is highly specific to lupus. This means that it is a marker that is mostly seen in lupus and not other conditions. However, a negative anti-dsDNA does not rule out lupus as a diagnosis because not everyone with lupus tests positive for anti-dsDNA. About 6 in 10 people with lupus (60%) test positive on a dsDNA test, and 4 in 10 people with lupus (40%) test negative.

These blood markers are not used alone to diagnose lupus – doctors will look at the symptoms and other test results to come to a diagnosis.

If you want to learn more about the tests used in diagnosing lupus, including ANA and ds-DNA tests, check out Dr Arvind Kaul’s presentation here.

The criteria that are commonly used to diagnose lupus are the EULAR/ACR criteria, created by the European League Against Rheumatism and the American College of Rheumatology. The criteria use different categories to give a score which indicates whether lupus can be diagnosed or not. Examples of what is included in the criteria:

• Kidney symptoms and signs, like detecting protein in the urine
• SLE-specific antibodies (like a positive ds-DNA test)
• Symptoms of the bones, joints and muscles (called “musculoskeletal” symptoms)
• Symptoms of the skin and mucous membranes like mouth ulcers and hair loss (called “mucocutaneous” symptoms)

You may have to wait a while for your appointment with a rheumatologist once you are referred, depending on how unwell you are, and how busy the service is.

Before seeing the doctor, your height, weight and blood pressure will normally be taken. This is important for them to document in case they want to prescribe any medications.

The rheumatologist will take a medical history from you, to understand how long you’ve had symptoms, what they are, and how they’ve been affecting you. They may also ask about any health conditions you already have, any medications you’re taking, and if there are any illnesses in the family.

The rheumatologist may also examine you. This may include having a look and feel of your joints and the way they move, having a look at your skin, and assessing your heart and lungs with a stethoscope.

More tests may be performed, like blood and urine tests. Depending on your symptoms, other tests may be requested, but this will be explained to you in your appointment.

As lupus affects so many different systems in the body, your rheumatologist may refer you to other specialists (for example, kidney specialists).

Remember that appointments are a great time to ask questions about your condition. See here for more information on visiting the doctor.

The average time from symptoms first appearing to diagnosis is currently about 6 years. Some people are diagnosed much more quickly than this, and for other people it is longer. There are lots of reasons why lupus can take a long time to diagnose:

• The symptoms are non-specific. This means that the symptoms of lupus are also seen in other illnesses, so doctors have to rule out other conditions that could cause the same symptoms. It also means that doctors may think of more common illnesses before they think of lupus.
• There is a wide variety of symptoms. Lupus can impact people in different ways, which means two people may both have lupus but experience different symptoms. This makes it more difficult to identify lupus, because there isn’t just one way that lupus presents in everyone.
• The wide variety of symptoms means that sometimes people see separate medical professionals for each type of symptom, and no one is putting the whole picture together which might indicate lupus.
• There is not one specific test that can say for certain if you have lupus or not, and not everyone with lupus will test positively on common tests like ANA and ds-DNA (see above). This means doctors often have to rule out other conditions before confirming it is lupus.
• Some medical professionals do not have good knowledge of lupus. This means they don’t know that a person’s symptoms could be caused by lupus and give the wrong diagnosis at first.
• It can sometimes take longer for the results of some of the blood tests for lupus to come back, than some of the other tests done at a GP surgery. “Like many other people, I was diagnosed initially with rheumatoid arthritis because I presented with sudden severe joint pain and inflammation. The lupus diagnosis came after maybe three years when my symptoms became more general with muscle pain and pericarditis.”

People with lupus often find that their path to diagnosis was a lot longer than they expected it to be. This can be because the symptoms of lupus are quite vague and can mimic other conditions, but also because some medical professionals don’t have good knowledge of lupus.

Occasionally, people can feel like their healthcare teams are not listening to their concerns. Remember that you are entitled to a shared decision-making process with your doctor, so they should give you the time to voice your concerns about your health, and let you have your say on the way things are being managed.

If you feel you are not being listened to, you can request a second opinion or to change doctors, or make a complaint. The process for doing this can be slightly different in different areas, so it can be worth contacting your local patient support organisation for help:

• England – PALS (Patient Advice and Liaison Service England)
• Wales – PALS (Patient Advice and Liaison Service Wales)
• Scotland – PASS (Patient Advice and Support Service)
• Northern Ireland – PCC (Patient and Client Council)

“It took two years to get a diagnosis and that only happened after I changed doctor’s surgery. I feel it was the GP not testing for the right things, so not necessarily their fault; more lack of education about lupus. My new GP did the correct blood tests, I was then referred to a rheumatologist and the rest is history.”

Lupus looks different for every person with the condition. Being diagnosed may mean you have to start taking medication, visiting the hospital for appointments more often, or change your daily routine to work better for you whilst you are unwell. Many people with lupus find that after a flare has been controlled, they can return to their normal life with a few minor changes. However, some may find that their periods of illness with lupus do affect their life substantially, and need more support from family, friends and their healthcare team during this time.

If you are diagnosed with lupus, this can be very overwhelming. Some people describe feeling a sense of relief at getting diagnosed, especially if it has taken a long time to be diagnosed. Others find diagnosis worrying. Being diagnosed with a chronic condition can lead to a lot of different emotions, so be sure to give yourself time to process this and let others help you out at this time.

It will take time to get used to what your diagnosis means for you. You may also be quite unwell when you receive your diagnosis, so do not worry if learning about your diagnosis is not your priority.

 Being diagnosed with lupus may mean you have to start taking regular medications. You can find out more here about some common medications used to manage lupus. You may be asked to attend your GP or hospital at regular intervals for blood tests, other assessments and check-ups with your rheumatologist. With time, you will begin to learn how best to manage your lupus.

Talking to others with a diagnosis of lupus can be helpful – visit our online community forum for the latest discussions.

If you feel your mood is being affected by the impact of your diagnosis, talk to your GP about accessing mental health support. The Wren Project is also a good place to look for support, as they provide listening services for people with autoimmune conditions. If you think that talking to someone with lupus could be beneficial for you, contact Lupus UK, who can organise this for you.