Undiagnosed Sjogren's syndrome
If you are undiagnosed, but feel that you may have Sjogren's, then this page may provide you with some help of understanding why and also getting a diagnosis.

People with Sjogren's have so many symptoms and this may make diagnosis difficult.

Symptoms may be eye and mouth dryness and/or a variety of extraglandular manifestations and systemic autoimmune features. This makes the diagnosis challenging, and possibly long, as other disorders have to be ruled out.

The creation of the American-European criteria for clinical research has also caused confusion in the diagnosis of Sjogren's (SS) as many doctors mistakenly believe their patients need to fit this criteria. It was designed for clinical research and not for diagnosis.

Seronegativity is also explained at the bottom of this page.

Checklist of Sjogren's symptoms. 
Before going to the doctor go through the following list and write down any symptoms, that you may have. You do not have to have all of these symptoms.
Oral symptoms•Does your mouth feel dry?

•Do you need liquids to swallow dry foods?

•Do you frequently sip/drink water?

•Do you have a burning sensation in the mouth?

•Do you have painful sores or red patches at the corners of the mouth (angular cheilitis)?

•Do you get frequent dental cavities, particularly gumline cavities?

•Do your teeth tend to chip, crack, and/or erode on the surfaces?

•Do you suffer from gum inflammation or receding gums (gingivitis?)
Ocular symptoms•Do your eyes frequently feel dry, irritated, itchy, or painful?

•Do you have a sensation that there might be a foreign body in your eye?

•Are your eyes light sensitive?

•Do you frequently use eye drops for irritation or dryness?

•Is your vision frequently blurry, or do you have unexplained vision changes?
Other symptoms•Have you noticed gland swelling in your face or along the jaw line (swollen parotid and/or submandibular glands)?

•Do you suffer dryness of the vagina (is intercourse painful?) or skin (is your skin itchy or flaking?)?

•Do your feet, legs, or hands ever feel numb, have a change in sensation, or have burning pain (peripheral neuropathy)?

•Do you suffer from extreme fatigue?

•Do your joints or muscles ache when you are not sick (arthralgias, myalgias)?

•Do you ever notice your fingers turning pale or blue in the cold (Raynaud’s disease)?
Take this list to your doctor. 
Having some of these symptoms should prompt the physician to engage in further evaluation through blood tests and/or a consultation with a rheumatologist .

Open AccessPublished:October 15, 2020

At the rheumatologist

Patients suspected of SS should undergo a thorough medical history and physical examination with attention to characteristic features of SS, other systemic rheumatologic autoimmune diseases (eg, systemic lupus erythematosus and rheumatoid arthritis), and conditions that may resemble SS. 

Diagnostic testing, including ophthalmologic consultation for an ocular examination, selected blood tests, and other testing, are also important elements of the evaluation. 

Many patients do not require diagnostic testing beyond the initial blood tests and examination by an expert in eye disease, although some patients may require formal testing of salivary function, a labial salivary gland biopsy, and/or imaging studies. An oral medicine specialist can facilitate a more comprehensive diagnostic evaluation through assessment of salivary hypofunction and performance of the labial salivary gland biopsy.

Alan N Baer, MD, MACR 
Section Editor:
Robert Fox, MD, PhD 
Deputy Editor:
Paul L Romain, MD
All topics are updated as new evidence becomes availableThis topic last updated: Apr 29, 2021.

AECC criteria The American-European criteria for clinical research.

Please note these criteria were designed for clinical research trials and NOT for diagnosis.They were designed by a group of American and European rheumatologists to be the international criteria for classification of SS i.e. for scientific communication and clinical research. They were not developed for use in routine clinical practice and not every patient who has SS will fulfill the proposed criteria. Unfortunately, for people with SS, many doctors no longer diagnose patients with SS unless they fulfil these criteria. 

Four out of the six criteria are required for primary Sjogren's.

These are:

1. Subjective dry mouth
2. Subjective dry eye
3. Abnormal Schirmer test or Rose Bengal / Lissamine green staining
4. Abnormal unstimulated sialometry (or scint)
5. Abnormal lip gland biopsy - focal sialoadenitis
6. Presence of either or both antibodies anti-SSA / SSB 

Find out more about Primary and Seconday Sjogren's.

Tests that may be requested to help diagnose Sjogren's syndrome.

Objective evidence of dry eyes — Tear production may be measured using the Schirmer test. 
A small piece of sterile filter paper, which comes in a standard Schirmer test kit, is placed in the lateral third of the lower eyelid and the extent of wetting in a given time is measured. 
Wetting of less than 5 mm in five minutes is considered abnormal. 
Use of topical anesthesia and blotting of the tear reservoir prior to the test may improve accuracy as a measure of basal tear production. 
The amount of wetting is typically symmetrical.
Salivary gland biopsy — A labial salivary gland biopsy (LGB) can be an important diagnostic tool in patients with suspected SS. The biopsy should be taken from the lower lip.

Objective evidence of salivary gland involvement other than biopsy — To satisfy this item for salivary gland involvement an abnormal result of one of the three following tests is required: 

 •  Salivary gland scintigraphy 

  •  Parotid sialography 

  •  Sialometry 

From Classification and diagnosis of Sjögren's syndrome-I

 Robert Fox, MD, PhD and Paul Creamer, MD

Blood Tests:

SS-A (or Ro) and SS-B (or La): these are antibodies found in some people with Sjogren's. Studies have shown that between 60 to 80 percent of patients with primary SS exhibit one or both of these autoantibodies. SS-A (or Ro), which is also called Ro/SSA, is also found in patients with systemic lupus erythematosus and other conditions. 

Rheumatoid factor is present in 40 to 60 percent of Sjogren's patients.

Seronegative autoimmune diseases.

A close relationship exists between autoimmunity and autoantibodies; despite this, some patients are persistently negative for disease‐specific autoantibodies. These conditions have been defined as seronegative autoimmune diseases. Although the prevalence of seronegative autoimmune diseases is low, they may represent a practical problem because they are often difficult cases. The New York Academy of Sciences.
The diagnosis of Sjögren's syndrome (SS) should be suspected in individuals with:
  • persistent symptoms of dry eyes and/or mouth, 
  • parotid gland enlargement, 
  • an unexplained increase in dental caries, or 
  • abnormal results of specific serologic tests (eg, anti-Ro/SSA and/or anti-La/SSB antibodies, rheumatoid factor, and hyperglobulinemia).

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