Sjögren’s Syndrome is the UK’s second most common autoimmune rheumatic disease, yet the condition remains under recognised and frequently under treated. It does not command a high profile within the medical profession, and the general public is largely unaware of the problems faced by sufferers. In reality, Sjögren’s Syndrome is a debilitating, distressing and miserable condition.

• It affects approximately 3-4% of adults in the UK¹, with a mean age of 50 years.
• 90% of patients are women.

In Sjögren’s Syndrome the secretary glands that produce saliva, tears, vaginal, and other secretions develop a form of inflammation, similar to that seen in the joints in patients with rheumatoid arthritis. As a result of this, these glands stop working leading to dry eyes, dry mouth, dry skin and also dryness of the gastrointestinal tract. These features, as well as being very uncomfortable and unpleasant, means those sufferers may have difficulty swallowing dry foods and also dryness of the large bowel can cause symptoms similar to irritable bowel syndrome (IBS).

The clinical presentation of Sjögren’s Syndrome is variable, but typical symptoms include:

• Dry itchy, irritated eyes
• Dry mouth and difficulty swallowing
• Joint pain and muscle aches
• Low mood, irritability and impaired concentration
• Disabling fatigue

Sjögren’s Syndrome is an autoimmune disease, a condition where the body’s immune system starts attacking parts of the body instead of fighting infection, this is mainly the white cells, which travel in the blood stream.

In the case of Sjögren’s Syndrome, they attack the glands, which produce tears, saliva, skin, bowel and other secretions.

Sjögren’s Syndrome can occur later in the course of other rheumatic conditions, such as rheumatoid arthritis, lupus or scleroderma, this is known as Secondary Sjögren’s Syndrome. Most patients with these conditions will already be under the care of a rheumatologist who will usually make the diagnosis of Sjögren’s Syndrome as soon as the dryness symptoms are mentioned.

It can also occur, however, as a condition in its own right (Primary Sjögren’s Syndrome). It typically develops in women in their 30’s to 60’s, although it can occur at any age and affects both men and women. Features such as generalized muscle or joint aching and generalized fatigue can be the most prominent symptoms.

The fatigue isn’t an ordinary tiredness where you can have a good nights sleep and wake up feeling better, it’s a really quite overwhelming fatigue. In the situation where a person’s main symptom is tiredness and particularly if the dryness is not reported, the diagnosis may not be made for a long time, if at all. As a result of this, although the evidence suggests that Sjögren’s Syndrome is as common as rheumatoid arthritis, there are a significant proportion of people in whom it is not being correctly diagnosed and symptoms are put down to ‘old’ age for example, and people are suffering in silence.

Information about the service

First visit

At your first visit you will see a specialist nurse who will undertake some very simple tests of tear and saliva flow. You will then see a consultant who will make an assessment of your condition, to guide diagnosis or provide advice on management as appropriate. Additional tests may be requested, including blood and urine samples and ultrasound of the main salivary glands. Results of these additional tests are usually communicated to patients by letter. This is a multidisciplinary clinic and alongside Rheumatologists, patients may be assessed by specialists in Oral Medicine and Ophthalmology.

Follow-up visits

Patients with primary Sjögren’s syndrome are typically seen on a yearly basis, or more frequently if clinically indicated.

How to contact the service

Email: RheumatologyMedSecQueries@uhb.nhs.uk
Tel: 0121 371 6824