What symptoms occur in Sjögren’s syndrome?

Severe dryness of the eyes and mouth may lead to pain, difficulty swallowing and ulcer formation. Fatigue is common and may be profound. Other features resulting from the inflammation in glands include include sinusitis from upper airway dryness and vaginal dryness. Swelling of the salivary glands may occur. Many patients with Sjögren’s Syndrome have Raynaud’s phenomenon [link to Raynaud’s page]. Dry skin and/or rashes and joint pains are common, and other problems, such as lung or nerve involvement, liver disease, chronic pancreatitis and blood disorders occur in a minority of patients with Sjögren’s syndrome.

The characteristic symptoms of dry mouth and dry eyes do not, however, always indicate Sjogren’s syndrome. Some or all of these symptoms can occur with certain infections and with some drugs, e.g. include some blood pressure treatments and some antidepressants. Also previous radiotherapy to the head and neck region can cause dry eyes and mouth.

How is a diagnosis of Sjögren’s syndrome made?

Many or all of the following features will be taken into account by your doctor, when considering a diagnosis of Sjögren’s syndrome:

• History of dry eyes and/or dry mouth
• Evidence of dry eyes* and/or dry mouth
• Blood tests which may show abnormal antibody production
       (particularly anti-Ro and anti-La antibodies)
• Biopsy (taking a small piece of) a small salivary gland in the lip may show typical changes under the microscope
• ABSENCE of another obvious cause for the symptoms!

* Evidence for dry eyes is usually obtained by performing “Schirmer’s test” in the clinic. This uses small pieces of filter paper, which are placed under the edge of the lower eyelid. Tear production is measured by how far the ‘wetness’ travels along the paper. Less than 5 mm in 5 minutes is abnormal. Alternatively an ophthalmologist (eye specialist) can detect signs of abnormal “dryness” in the eye.

How is Sjögren’s Syndrome treated?

There are two strands to the treatment of Sjögren’s syndrome:

• Managing symptoms
• Preventing tissue and organ damage

Managing Symptoms

At the moment, symptomatic relief is the mainstay of treatment for Sjögren’s syndrome.

Dry Eyes

Artificial tears can be used as often as required (but their effect is short-lived).
Eye ointments last longer but are greasy – they are often used at night.
Blocking the tear duct (which takes tears away from the eyes) can sometimes be useful.
Protective glasses can be helpful to reduce evaporation from the surface of the eye.

Pilocarpine is a drug which is sometimes prescribed to stimulate tear flow

It does not work in all patients
The side-effects are often a nuisance but tend to decrease with time:
        e.g. sweating, flushing, urinary frequency

Dry Mouth

Artificial saliva can be used but its effect is short-lived
Sugar-free sweets and chewing gum will stimulate salivary flow in some patients
Avoidance of medicines which themselves cause a dry mouth, e.g. amitriptyline or diuretics (water tablets)
Pilocarpine may also be used for this (see above).

Dry Vagina

Lubricants (e.g. KY jelly) can be purchased from your chemist.

Dry Skin

Emoillient creams and ointments (e.g. E45) can be purchased from your chemist

Rashes and Joint Pains

The anti-malarial tablet hydroxychloroquine often provides some relief from joint and muscle pain and fatigue.

Raynaud’s Phenomenon

Liver/Lung/Nerve Involvement or Vasculitis

If Sjögren’s syndrome is causing serious tissue damage, then treatment with corticosteroids and with other immunosuppressive agents may be required. Further information on these agents may be found under the Drug Information section.

Can I get pregnant/have children now I have Sjögren’s Syndrome?

In most young adults with Sjögren’s Syndrome, their condition is not a cause for concern when considering starting/expanding their family.

There are a couple of exceptions, where additional care is required:

1. If your Sjögren’s Syndrome is being treated with immunosuppressive drugs, in particular cyclophosphamide, mycophenolate mofetil, methotrexate and sulphasalazine, then it is important to stop the drugs for several months before conception.

2. For women with Sjögren’s Syndrome, the presence of abnormal antibodies, called anti-Ro antibodies in the blood can be associated with abnormal heart rhythms in their baby; these may need treatment before or after birth. The risk of this happening is approximately 1 in 50, but only if you have the anti-Ro antibody.

Will I pass on Sjögren’s Syndrome to my children?

Sjögren’s Syndrome is not hereditary in the way that eye or hair colour are. Both genetic susceptibility and environmental triggers are thought to be important in the development of lupus. There appear to be many genes which can predispose an individual to developing an autoimmune disease, such as Sjögren’s Syndrome. These genes are not necessarily “bad” genes – they may be protective against other kinds of diseases. However, children of people with autoimmune disease generally have a slightly increased risk of developing some form of autoimmune disease.

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