The process of diagnosing Sjögren’s disease (formerly called Sjögren’s syndrome) isn’t always straightforward. There isn’t just one singular test to confirm a Sjögren’s diagnosis, and Sjögren’s symptoms aren’t the same from person to person. The main symptoms of Sjögren’s, dry eyes and a dry mouth, have several other possible causes that need to be ruled out before Sjögren’s is confirmed.
The average time between a person first noticing Sjögren’s symptoms and getting an official diagnosis is three years, which shows how lengthy and complex the diagnostic process can be. This article explains what you can expect during the diagnostic process, from start to finish.
For most people, the first of many steps in their journey toward a Sjögren’s diagnosis is noticing symptoms and reporting them to their doctor. Unusually dry eyes and a dry mouth are the two most common symptoms, but they’re not the only ones — Sjögren’s disease can cause dryness in other areas that are naturally lubricated. Other common symptoms related to dryness include:
Sjögren’s disease can cause other symptoms that might appear to be unrelated at first, so be sure to tell your doctor about all your symptoms, even if they seem insignificant. When Sjögren’s disease affects other areas of the body, it can lead to fatigue, joint pain, brain fog, and light sensitivity.
When visiting your doctor, it’s important to go into detail about which symptoms you have, when they started, and if they seem to flare up at specific times.
After reviewing your symptoms, your doctor may refer you to a rheumatologist, ophthalmologist, or another specialist to look into specific symptoms. If you have dry eyes, for example, an ophthalmologist can test you for eye conditions that could be causing the dryness. A wide variety of tests from different specialists can help rule out other possible causes of your symptoms.
Your healthcare team might use any of the following tests, which are commonly used to help diagnose Sjögren’s disease.
Blood and urine tests are used to look for antibodies that are common in people with Sjögren’s and other autoimmune diseases. Antibodies are a part of the immune system. They’re protective proteins that flag germs like viruses and bacteria, so your immune system knows what to eliminate.
Specific antibodies called autoantibodies or antinuclear antibodies (ANAs) mistakenly flag healthy tissues in this way. Most people have only small amounts of ANAs, but people with autoimmune diseases like Sjögren’s have high levels.
For this reason, your doctor will likely order a blood test to check for antibodies at some stage of the diagnostic process. They will look for anti-Sjögren’s-syndrome-related antigen A (anti-SSA) and B (anti-SSB). The tests won’t confirm a Sjögren’s diagnosis, but the results point your provider in the right direction for further testing. Other blood tests may look for signs of inflammation, signs of liver or kidney problems, or blood cell counts.
Certain tests will take a closer look at your eyes to diagnose or rule out possible causes of dry eye. One common test is called the Schirmer tear test. During this test, your ophthalmologist places a piece of filter paper under your lower eyelid to collect tears. The goal is to find out if your tear glands are producing enough tears to keep your eyes lubricated.
Your ophthalmologist may also examine your eye through a magnifying device called a slit lamp. Before doing so, they may use ocular surface staining, which involves placing special dye drops in the eye to highlight areas of dryness or damage.
Certain tests focus on your mouth. Specifically, they look at your salivary glands and measure your saliva production.
Sialometry measures your saliva flow. There are a few different techniques, including some that stimulate saliva production with sour liquid or suction and others that don’t involve any stimulation.
A sialogram is an X-ray imaging test that allows you to see the flow of saliva. This involves injecting a dye into the salivary glands in front of your ears, then watching it flow into your mouth.
Also called parotid scintigraphy, this test starts with an injection of a low-level radioactive material into your vein. Doctors use a special camera to watch as the radioactive material reaches your salivary glands. They then give you a sour substance to help you produce more saliva and take another series of pictures using the same camera.
Another test that can provide information about your salivary glands is a lip biopsy. The salivary glands just under your lip are the easiest to access, so doctors remove a tissue sample from this area that they can examine under a microscope. They look for signs of inflammation in the glands that may point to Sjögren’s.
All of the tests mentioned in the previous section can give your healthcare provider important information about your health, but none of them can individually confirm a Sjögren’s diagnosis. Some may rule out other conditions, or their results may indicate that Sjögren’s is a possible cause of your symptoms.
Doctors look at all your test results and use specific criteria to make a diagnosis of Sjögren’s disease. They may use the following criteria, which are part of the 2016 American College of Rheumatology (ACR) and European League Against Rheumatism (EULAR) guidelines. A total score of 4 or more supports a diagnosis of primary Sjögren’s disease.
Be sure to get in touch with your doctor if you’ve recently noticed possible signs of Sjögren’s disease. Your doctor can review all your test results or guide you to further tests that may be helpful.
Having conditions like sarcoidosis or lymphoma can make Sjögren’s disease harder to diagnose. A trusted healthcare provider can help confirm what’s going on and guide you to the right treatment.
On MySjögrensTeam, people share their experiences with Sjögren’s disease, get advice, and find support from others who understand.
Which tests helped diagnose Sjögren’s disease for you? Let others know in the comments below.
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