# Symptoms and stages of Sjögren's syndrome
Early stage: onset of symptoms
In the early stage of Sjögren's syndrome, the first complaints usually develop gradually. The most common symptoms are dry eyes and a dry mouth, because the immune system begins to attack the salivary glands and tear glands.
**Eye complaints** are often the first signal: a granular, sandy feeling, especially towards the end of the day or after exertion. The eyes can be red and irritated, and some see blurred spots. Artificial tears help temporarily, but many patients notice that regular eye drops have little lasting effect. These complaints can make reading and watching television uncomfortable.
**Dry mouth** can begin equally subtly: difficulty swallowing solid food, especially bread or biscuits, and constant thirst. Some notice they wake up more often at night with a dry throat. Gum problems and tooth erosion can develop because saliva works less protectively. A dry mouth makes social contact more difficult — many patients feel uncertain when eating and drinking in company.
**Fatigue** is a complaint that many people report at this stage, although it is not always the first signal. The fatigue can be disproportionately severe and not disappear after rest — which is known as "systemic fatigue" and is more than normal tiredness.
**Joint complaints** occur in approximately 50–60% of patients: stiffness and sometimes pain in the hands, wrists or knees, especially in the morning. This differs from rheumatoid arthritis because there is usually no permanent damage in this stage.
These symptoms can last for months or even years before a diagnosis is made. Many patients visit different doctors first, because dry eyes and dry mouth seem like separate problems. The impact on daily life is variable at this stage: some experience it as less serious, others already notice meaningful burden in work and social activities.
Stage with extensive complaints
As the syndrome progresses, symptoms can extend beyond dry eyes and mouth. This stage can develop years after the first signal, but the timing is very different for each person.
**Airways and lungs** can be affected. A dry, persistent cough (lasting longer than a few weeks) is not uncommon. The airways feel dry and irritated. In some cases, interstitial lung disease can develop — scarring in lung tissue that complicates oxygen exchange. Tests such as pulmonary function tests or special CT scans of the lungs can provide clues, but many patients only experience fatigue on exertion or shortness of breath.
**Skin** can become dry and itchy, not only around the lips and eyes. Sometimes a reddish skin rash develops (vasculitis), especially in men, although this is less frequent.
**Gastrointestinal tract** can cause complaints: gastro-oesophageal reflux, nausea, abdominal pain or changes in bowel movements. This is less often recognized, but research shows that the gastrointestinal tract is involved in many patients.
**Nerves and brain** can be affected in some cases. This can manifest as tingling in hands or feet (peripheral neuropathy), concentration difficulties or memory complaints (sometimes called "brain fog"). Very rarely, more serious neurological symptoms can occur, such as balance disorders or headaches of a different nature than usual.
**Kidney function** can decline subtly, although many patients notice little of this. This requires regular blood tests to detect.
At this stage, fatigue often increases and it becomes more difficult to maintain a normal working day. Many patients feel misunderstood, because the syndrome can be "invisible" — from the outside you cannot see that someone is struggling.
Advanced stage with complications
This stage affects a smaller group of patients, particularly those in whom the syndrome is not well controlled or in whom complications develop. The course and time of onset are highly individual.
**Interstitial lung disease** may progress further, with increasing shortness of breath, particularly during physical exertion. This requires regular monitoring (spirometry, arterial blood gas analysis) and can significantly limit quality of life.
**Lymphoma** is an important complication risk in Sjögren syndrome. Approximately 5–10% of patients develop a B-cell lymphoma during their lifetime, usually non-Hodgkin type. This can manifest as swollen lymph nodes, persistent fever, weight loss, or increased fatigue. The consequences can be serious and require intensive treatment.
**Kidney disease** can become more severe, in rare cases progressing to glomerulonephritis. This can lead to protein excretion in the urine and declining kidney function, detectable through blood tests.
**Coronary heart disease** and **stroke** have been reported in association with Sjögren syndrome, likely due to systemic inflammatory activity and possibly vasculitis (inflammation of blood vessels).
**Infections** become easier because the natural protective effect of saliva and tear fluid is lacking: tooth decay, fungal infections in the mouth, and respiratory infections occur more frequently.
Patients at this stage usually require frequent doctor and hospital visits. Fatigue can be disabling and many are no longer able to work.
Life expectancy and course
Sjögren syndrome is not inherently fatal, but complications can be. In the primary form — that is, without other underlying autoimmune diseases — studies from recent years report average life expectancy close to that of the general population. In patients with severe pulmonary or renal involvement, the outlook may be worse.
These are population figures; they say nothing about your own situation. Much depends on how aggressively the syndrome progresses, whether complications develop, and how well treatment fits.
When to contact your doctor
Contact your healthcare provider (general practitioner, rheumatologist, or specialist) if:
- **Fatigue increases** significantly and rest does not help
- **Shortness of breath** occurs during normal exertion
- **Cough** is persistent and lasts for a long time
- **Swelling** develops in the neck, armpit, or groin
- **Fever** occurs without a clear cause
- **Vision loss** or eye inflammation occurs (red, painful eyes)
- **Concentration problems** or confusion increase
- **Urine changes** are noticed (blood-red, cloudy, foamy)
These are alarm signals that warrant further investigation.
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_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._