Sjögren’s syndrome – also known as Sjogren syndrome – is a chronic (ongoing) disease that typically results in symptoms of dry eyes and dry mouth. It is caused by problems with the immune system and is much more common in women than in men.
While there is no cure for Sjögren’s syndrome, there are treatments that can help relieve the symptoms.
Symptoms of Sjögren’s syndrome
The main symptoms are dry eyes and dry mouth. Dry eyes can cause symptoms such as itchy, burning or gritty eyes. Eyes may sometimes look red and are often sensitive to wind and light.
Dry mouth can cause a variety of symptoms, including:
- Burning sensation in the mouth.
- Thick saliva.
- Difficulties with chewing and swallowing some dry foods.
- Altered taste.
- Difficulty talking for long periods of time.
- Constantly needing to drink water or other fluids to relieve symptoms, even overnight.
The salivary glands can become inflamed, enlarged and painful from time to time. Dental problems and mouth infections are also common.
Other symptoms of Sjögren’s syndrome can include:
- Fatigue (tiredness), which is often severe.
- Dry skin.
- Dry nose and throat.
- Vaginal dryness.
- Muscle and joint pains.
- Arthritis, often involving the hands and feet.
- Skin rashes due to vasculitis (inflammation of blood vessels).
- Numbness or pain due to nerve problems.
Sjögren’s syndrome is an autoimmune condition – where the immune system attacks tissues in the body. The immune system attacks the lacrimal (tear) glands in the eyes and the salivary glands of the mouth. The resulting inflammation and destruction of these glands leads to the symptoms of dry eyes and a dry mouth. Damage to other organs in the body can also occur.
What causes the immune system to attack the body’s tissues in Sjögren’s syndrome is still not known. Genetic factors are thought to be involved. Hormones and viral infections may also possibly contribute to the development of Sjögren’s syndrome, but more research is needed to work out the exact cause.
Primary Sjögren’s syndrome is when the condition occurs by itself. Secondary Sjögren’s syndrome is when it’s associated with another immune system condition, such as rheumatoid arthritis, systemic lupus erythematosus (also known as SLE or lupus) or systemic sclerosis.
Women have a much higher risk of getting Sjögren’s syndrome than men – the female to male ratio is 9:1. Among women, it is often diagnosed during the 20s or 30s, or after menopause in the mid-50s.
Your risk is also higher if you have another autoimmune condition, such as lupus or rheumatoid arthritis.
The most common complications include problems with the mouth and eyes.
- Dental disease, including cavities and loss of teeth, as well as mouth infections such as oral thrush) are common. So, regular dental checks are essential.
- Light sensitivity, eye infections and ulceration of the cornea in the eye can happen, meaning regular eye checks are also needed.
Less common complications include:
- thyroid problems;
- Raynaud’s phenomenon;
- kidney disease;
- lung disease;
- blood clots; and, less commonly
- lymphoma (cancer of the lymphatic system).
It is therefore very important for people with Sjögren’s syndrome to have regular medical check-ups.
Diagnosis and tests
See your GP (general practitioner) if you have dry eyes and mouth or other symptoms that you think may be related to Sjögren’s syndrome. Your doctor will ask about your symptoms and how long you have had them. Dry eyes and/or dry mouth that have been a problem for more than 3 months can indicate Sjögren’s syndrome.
Your doctor will want to perform a physical examination, looking for signs of Sjögren’s. Dentists also often notice signs of Sjögren’s syndrome.
Diagnosing Sjögren’s syndrome can be difficult because dry eyes and dry mouth are common symptoms that can be caused by many conditions or by medicines you may be taking.
Several tests may be recommended to confirm the diagnosis.
- Eye examination using a slit lamp to magnify the eye. Special eye drops may be used to check for damage to your cornea.
- Schirmer’s tear test – a simple test that involves placing a small piece of filter paper under your lower eyelid to assess whether your eyes’ ability to produce tears is normal.
- Blood tests can show if there is inflammation and confirm the presence of the main auto-antibodies (antibodies made by the immune system that attack tissues in the body) found in people with Sjögren’s syndrome.
Additional tests are sometimes needed to make the diagnosis, including testing the production and flow of saliva or a biopsy (small tissue sample) of a salivary gland – usually taken from the inside of the lower lip.
Your doctor may refer you to a rheumatologist (specialist in arthritis and inflammatory conditions) or immunologist (specialist in conditions of the immune system) for ongoing treatment. They may also refer you to an eye specialist (ophthalmologist) for additional tests and treatment.
Treatments for Sjögren’s syndrome
There is no cure for Sjögren’s syndrome, but there are treatments available to help relieve symptoms. Your doctor will recommend treatment based on your symptoms and also to help prevent and treat possible complications.
It’s important to avoid anything that makes dry eyes and dry mouth worse.
- Avoid dry environments (air conditioning and heaters can make air dry).
- Avoid certain medicines, including antihistamine and anticholinergic medicines, which are often found in over-the-counter cold and cough medicines.
- Avoid alcohol (including mouthwashes containing alcohol), caffeine, smoking and mouth breathing, which can make dry mouth symptoms worse.
Self-care measures that can help with dry mouth and eyes include the following.
- Using a humidifier to keep air moist.
- Frequently drinking water and sugar-free drinks can help dry mouth, as can chewing sugar-free gum.
- Wearing spectacles with windshields.
- When reading, taking regular breaks to help prevent dry eye symptoms.
Treatments for dry eyes
Artificial tears and eye lubricants (applied as gels or ointments, often at night) can help with dry eyes. How frequently these should be used will depend on the severity of the dryness. Prescription medicines and eye drops may be recommended to stimulate the tear ducts or reduce inflammation.
A minor surgical procedure to seal the tear ducts and stop tears draining from your eyes (punctal occlusion) is sometimes recommended for relief of symptoms. This is usually only considered when other treatments have not been effective.
Regular eye examinations by a specialist are important to check for corneal damage associated with dry eyes.
Treatments for dry mouth
Artificial saliva (e.g. Oralube Saliva Substitute) sprays might be useful, especially in drying environments such as on aeroplanes. Sugar-free sweets or lozenges may help to stimulate saliva. People who don’t produce much saliva might also find mouth gels (e.g. Biotene Oralbalance Moisturising Gel, Aquae Gel) helpful.
Because there is inadequate saliva, people with Sjögren’s syndrome are more prone to dental problems. This can be protected against by rinsing your mouth regularly, particularly after meals, and avoiding drinks and snacks that contain sugar. A dental check-up every 3 to 6 months is recommended.
People with Sjögren’s syndrome are at increased risk of developing oral thrush. Symptoms of this include mouth or tongue burning, intolerance to spicy foods, or splitting in the corners of the mouth. Once this condition is diagnosed, it can be treated with medicines available on prescription.
Dry skin can be treated with normal moisturisers, vaginal dryness may be relieved by vaginal lubricants and moisturisers (e.g. Aci-Jel Restore Gel, Replens), and a saline nose spray can help with a dry nose.
Simple painkillers such as paracetamol can be taken to ease muscle and joint pain. Prescription medicines may be recommended for more severe pain.
Support for people with Sjogren’s syndrome
It can be difficult living with an ongoing illness such as Sjögren’s syndrome. By joining a support group and talking to others who understand what it’s like to have this condition, you can help yourself feel less alone. You may even be able to share tips and advice on managing your symptoms. Search online or ask your doctor or specialist about a support group that would meet your needs.