Dry eyes and dry mouth are the two most common symptoms of one of the most prevalent autoimmune diseases affecting mostly women. Sjögren’s syndrome is a serious autoimmune disease that preferentially attacks and damages the salivary, tear and mucous-secreting glands, resulting in dry eyes, dry mouth, or swollen salivary glands.

Recognized as one of the most prevalent autoimmune diseases, it was first identified by a Swedish physician, Henrik Sjögren, in 1933.

Sjögren’s is a chronic, systemic disease

Sjögren’s is a chronic, systemic disease that can cause arthritis, painful weak muscles, neuropathy and debilitating fatigue. It can result in inflammation of the lungs, kidneys, GI system, blood vessels, liver, brain or thyroid gland.

Sjögren’s syndrome is often under-diagnosed, misunderstood and under-treated

Symptoms may wax and wane and are often unpredictable. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their quality of life. Early diagnosis and proper treatment can prevent serious complications and greatly improve the quality of life for those with Sjögren’s syndrome.

Who does Sjögren’s syndrome affect ?

  • 1 of 70 Canadians, up to an estimated 430,000.
  • 9 out of 10 patients are women
  • People between 35-65 years of age, but children can also suffer from Sjögren’s
  • Often the disease occurs alone (Primary Sjögren’s syndrome)
  • It can also occur as a complication in rheumatoid arthritis, lupus, scleroderma, primary biliary cirrhosis or other connective tissue diseases (Secondary Sjögren’s syndrome)

What are the most common Sjögren’s symptoms ?

  • Dry, gritty, sore or burning eyes
  • Eyes may be sensitive to sun, tear excessively
  • Dry or burning mouth, yeast infections
  • Difficulty speaking, chewing or swallowing
  • Frequently using liquids to help swallow dry foods
  • Increased dental decay
  • Fatigue
  • Swollen salivary glands
  • Difficulty wearing dental apparatus
  • Altered sense of taste or smell
  • Sore weak muscles
  • Dry cough
  • Sore or cracked tongue
  • Dry skin and rashes
  • Digestive problems
  • Joint pain
  • Dry nose
  • Mouth sores
  • Vaginal dryness
  • Headaches

What should I do if I suspect Sjögren’s syndrome ?

Talk to your health care provider if you have had dry eyes and / or dry mouth for more than three months and other commonly associated Sjögren’s-types symptoms. Fatigue and joint pain are common complaints of Sjögren’s because this is a systemic inflammatory disease.

Is Sjögren’s easily diagnosed ?

NO: It can often be difficult to diagnose due to the complexities of the disease and diversity of symptoms. All symptoms may not be present at the same time. On average, it can take 5-9 years to be diagnosed. Depending on their symptoms, an undiagnosed person may seek treatment from different specialists who will treat each symptom individually.

Sjögren’s can mimic other diseases such as rheumatoid arthritis, lupus, multiple sclerosis or fibromyalgia, further complicating diagnosis. One of the difficulties with diagnosing Sjögren’s syndrome is that patients frequently have no obvious clinical findings and, unless the physician is particularly astute, they will not be diagnosed appropriately. The invisibility of the disease may add to the delay in diagnosis or not to be taken seriously by professionals. The general lack of awareness about this complicated syndrome may also be a factor in the delay of diagnosis.

Ways Sjögren’s syndrome can affect your body

  • Dry eye causes considerable discomfort and can lead to corneal ulcerations if left untreated. Eyes are more sensitive to irritants and susceptible to infection.
  • Dry mouth can affect diet and nutrition, speech, taste, tolerance to dental prostheses, and dental decay leading to poor oral health.
  • Skin disorders such as cutaneous vasculitis, Raynaud’s phenomenon, and digital ulceration can occur.
  • Some people with Sjögren’s have liver abnormalities, including primary biliary cirrhosis and chronic active hepatitis.
  • A small percentage of Sjögren’s patients develop pancreatitis.
  • People with Sjögren’s may have neurological problems including impaired memory and concentration. Peripheral neuropathy is seen.
  • Severe oral dryness may lead to dysphagia, with food “sticking” in esophagus, or reflux esophagitis.
  • Sjögren’s can be complicated by recurrent upper respiratory infections including sinusitis and, less frequently, by obstructive or interstitial lung disease.
  • Nutritional malabsorption may occur due to damage to the mucus of the stomach lining. Malabsorption can occur for a variety of reasons including adult onset Celiac disease.
  • Vaginal dryness is common.

How is Sjögren’s syndrome diagnosed ?

Once Sjögren’s syndrome is suspected, you may have a series of blood tests, including:

  • ANA (Anti-Nuclear Antibody): About 70% of Sjögren’s patients have elevated antibodies that react against normal components of a cell’s nucleus.
  • SS-A (or Ro) and SS-B (or La): 70% of patients are positive for SS-A and 40% positive for SS-B.
  • RF (Rheumatoid Factor): 60-70% of patients have a positive RF.
  • ESR (Erythrocyte Sedimentation Rate): Measures inflammation. An elevated ESR can indicate an inflammatory disorder, including Sjögren’s syndrome.
  • IGs (immunoglobulins): Normal blood proteins, sometimes elevated in Sjögren’s.

The ophthalmologic tests include:

  • Schirmer Test: Measures tear production.
  • Rose Bengal or Lissamine Green and Fluoresceine: Uses dyes to observe abnormal cells on the surface of the eye, a consequence of the dryness of the eye.
  • Slit-Lamp Exam: Observation of lids to rule out the presence of lid inflamation which is often associated with a dry eye. The slit lamp examination is also used to examine the ocular tear film and the overall health of the ocular surface.

The salivary gland tests include:

  • Parotid Gland Flow: Measures the amount of saliva produced over a certain period of time.
  • Salivary Scintigraphy: Measures salivary gland function.
  • Sialography: An x-ray of the salivary duct system.
  • Lip Biopsy: Confirms lymphocytic infiltration of the minor salivary glands.

What kind of doctor treats Sjögren’s patients ?

Rheumatologists usually have primary responsabilities for managing Sjögren’s patients. Ophthalmologists, dentists, ear nose and throat doctors and other specialists can treat related Sjögren’s symptoms.

How is Sjögren’s syndrome treated ?

There are several over-the-counter products that can provide symptomatic relief for various aspects of the disease. There are a few prescription medications that may be helpful in treating dry eye, dry mouth and other symptoms depending on the type and severity.

What else can I do ?

It is important to seek expert eye and dental care. There are strategies and products that can help manage or relieve symptoms such as the use of electric toothbrushes, humidifiers, moisture chamber glasses or goggles. Often people are better able to cope with a chronic condition like Sjögren’s when they educate themselves and connect and learn from each other in support groups.

What will happen to me ?

Sjögren’s syndrome is a serious disease but is generally not fatal. One study reported non-Hodgkins lymphoma (lymph node cancer) occurred at a rate 44 times greater in Sjögren’s patients as compared to the general population. Lymphoma may occur in up to 10% of patients with Sjögren’s syndrome, but it is generally a low grade tumour and easily treated with the new drugs we now have available. It is important for Sjögren’s patients to be monitored closely for the possible complications, development of related autoimmune phenomena and lymphoma.

Is there a cure for Sjögren’s syndrome ?

Not yet; but with your help there will be. Please join with and make your voice heard ! Join the Sjögren’s Society of Canada and help conquer one of the most prevalent autoimmune diseases !

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