SICCA (DRYNESS)
Key Concepts
The most common Sjogren's symptom is sicca, which is informally described as dry eyes and mouth. Without adequate care, sicca may cause permanent harm, including loss of teeth, visual impairment, or even blindness.
Sicca is important, but it is just one of many Sjogren's features. Even though sicca is the most obvious and visible feature, most patients identify fatigue and pain as their most burdensome symptoms (169).
Not everyone with Sjogren’s has sicca, and not everyone with sicca has Sjogren’s. About 20% with Sjogren’s present with systemic (non-sicca) features and no obvious dryness (3, 8, 232) For most patients, sicca symptoms help point to a Sjogren’s diagnosis.
Sjogren’s is always systemic, even in patients who have sicca-dominant disease. Every Sjogren’s patient should be followed and given the proper care for both sicca and non-sicca Sjogren’s features.
Sjogren’s sicca symptoms are not simply a loss of secretions. Symptoms may be influenced by inflammation, neuropathic pain, and changes in the microbiota or the composition of secretions. It is likely that dysfunction of the autonomic nervous system contributes to sicca symptoms.
This page provides an overview of ocular (eye), oral, and airway sicca. Sicca may also impact the gastrointestinal tract, skin, and vagina. These features are usually managed by non-rheumatology clinicians.
Where to find sicca management information
Please refer to the excellent information provided by the Sjogren’s Foundation, The Sjogren’s Book (214), and Sjogren’s Syndrome: A Clinical Handbook (151). For practical tips, online support groups such as Smart Patients are helpful. See the Citations page for information about the books.
The Sjogren’s Foundation
National Patient Conference recordings:
Order from the Sjogren’s Foundation store. Excellent presentations about sicca are available.
Please share these guidelines with dentists and eye providers. Note that the Ocular Guidelines do not include some of the newest prescription treatments.
Sjogren’s Clinical Practice Guidelines, Oral
Sjogren’s Clinical Practice Guidelines, Ocular (eye)
Brochures and Resource sheets.
Dry Eyes Medication swallowing tips
Dry Mouth GYN
What is Sjogren’s? Skin Surgery tips
Other Sicca Resources
Article: Treating Dry Eye
Detailed, but easy to understand overview of Sjogren's dry eye management. Good for both patients and clinicians.
Nerve conduction studies
These tests evaluate the electrical conduction of the myelinated motor and sensory nerves. Because they do not test for small unmyelinated nerve function, they cannot rule out SFN, SFPN, or dysautonomia.
This page, like all the content on Sjogren’s Advocate, is for educational purposes only and does not constitute medical advice (see disclaimers). Please consult with your clinician(s) about Sjogren’s treatment, including sicca management.
Sjogren's Dry Eye Disease
Dry eye symptoms often occur long before Sjogren’s is suspected. Both eye doctors and primary care providers (PCPs) tend to overlook this early Sjogren's warning sign.
It takes 10 years, on average, from a diagnosis of dry eye disease to a Sjogren’s diagnosis (69). About 10% of dry eye disease patients have Sjogren’s. Eye doctors often treat dry eye without considering Sjogren’s as a possible cause.
Most people seek a diagnosis after sicca has far progressed. Even then, most people don't think to mention sicca symptoms to their PCPs (234), because they think they are unimportant or unrelated to their systemic symptoms.
Time to Sjogren’s diagnosis could be improved if eye doctors ask about systemic (non-sicca) symptoms in dry eye disease patients and other clinicians ask about ocular (eye) sicca symptoms in patients with common systemic features.
Although Sjogren's may present in many different ways, common early presentations include extreme fatigue, cognitive impairment, joint and muscle pain, "irritable bowel syndrome", persistent cough, and neuropathy/ dysautonomia features. Early Sjogren's symptoms are often misattributed to fibromyalgia, anxiety, depression, or functional neurological disorder.
Because Sjogren's sicca may not be interpreted as dryness, clinicians should ask patients about a variety of sicca symptoms, if they answer "no" to when asked about dry eyes.
Sicca symptoms of the eye include
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dryness/ inability to produce tears
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eye irritation, pain, or burning
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blurring, needing to blink to correct vision
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redness, sensitivity to light, poor night vision
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gritty feeling or foreign body sensation
RED flags: Patients who use prescription treatments for dry eye (Restasis, Cequa, or Xiidra, etc.) or artificial tears more than two times a day should be assumed to have sicca.
Dry eye symptoms are usually caused by a loss of tear volume as well as meibomian gland disease.
The meibomian glands secrete lipids that stabilize the eye surface. This keeps the tears from evaporating quickly. Most patients need to treat both aspects of dry eye disease.
Sjogren’s patients may have decreased functional vision even if they have normal visual based on reading a standard eye chart.
Blurring, difficulty reading, seeing a movie or TV screen, and poor night vision may be caused by a disrupted tear film.
Dry eye disease (DED) may cause serious damage.
Sjogren’s dry eye disease is often more damaging than non-Sjogren’s dry eye. Patients with mild sicca symptoms may be accruing serious damage (235). Sjogren’s eye disease is not trivial; when ignored it can lead to corneal ulcers, altered vision, or even blindness (69).
Not all Sjogren’s eye disease is related to dryness.
Systemic (non-sicca) eye manifestations such as uveitis, scleritis, and corneal melt may occur (69, 156). These vision-threatening emergencies require urgent treatment. Sudden onset of eye pain, vision changes and redness may indicate one of these conditions.
“Screening for SS (Sjogren’s) by ophthalmologists caring for patients with dry eye is not common practice, partly because serious ocular complications secondary to SS are not widely recognized.” (35)
Every Sjogren’s patient should be monitored by an eye doctor who is familiar with Sjogren’s eye disease at least once a year.
The eye specialist is often an ophthalmologist (MD eye doctor) because patients taking hydroxychloroquine (HCQ) need to undergo routine retinal screening.
An optometrist is often a good choice for managing dryness but they will need to refer to an ophthalmologist for HCQ screening or systemic (non-sicca) eye disease.
Sjogren's Dry Mouth
Oral sicca may lead to severe dental decay (caries) or even loss of teeth when it is not managed aggressively.
Patients often do not mention oral health concerns to anyone other than their dentist. PCPs and others should ask about eye and oral sicca any time that a patient presents with systemic symptoms that suggest Sjogren’s.
Because Sjogren's sicca may not be interpreted as dryness, clinicians should ask patients about a variety of sicca symptoms if they answer "no" when asked about dry mouth.
Sicca symptoms of the mouth include
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Dry mouth sensation
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Difficulty swallowing food without liquids
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Problems with food or pills getting stuck
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Severe, unexplained caries despite good oral hygiene
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Burning, irritated tongue and mouth
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Recurrent candida infections (thrush) and angular cheilitis
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Heartburn (gastroesophageal reflux disease)
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Difficulty tasting food
Sjogren’s patients may develop severe caries despite practicing good dental hygiene.
Dental caries do not occur in proportion to measured saliva flow. Other factors such as microbiota, lack of mucin secretion, and inflammatory changes contribute to dental decay and sometimes loss of teeth.
Oral candidiasis and angular cheilitis.
Oral candidiasis (thrush) often causes bright red mucous membranes, rather than the typical “cottage cheese” appearing film in the mouth. These conditions often require 10-14 days of treatment with antifungal medication.
Burning mouth and tongue
This has multiple causes including candidiasis, neuropathy, nutritional deficiencies, and more.
Salivary gland blockages (by stones or mucus) and infections may occur.
These often require treatment by an ear, nose, and throat doctor (ENT) (151, Ch. 3).
Oral dryness contributes to gastroesophageal reflux disease (GERD) (148).
GERD is more likely with oral sicca because saliva buffers stomach acid and loosens mucus. GERD may cause chronic cough. Any Sjogren’s patient with chronic cough should be evaluated for lung disease.
Difficulty swallowing (dysphagia) may be caused by dryness, autonomic neuropathy, or both (148).
Loss of taste and smell may occur.
This, combined with impaired swallowing often lowers the quality of diet and may result in weight loss and lower quality of life.
Dysautonomia may contribute to oral sicca symptoms
Saliva and tear glands are directly damaged by Sjogren’s. However, the loss of function frequently does not match the amount of damage. Severe oral dryness has been documented with only a 50% loss of glandular structure, which should be enough to make adequate saliva (233). This suggests that the autonomic nervous system, which stimulates saliva and tear production, may play an important role in sicca. Dysautonomia is becoming more widely acknowledged as a substantial contributor to multiple Sjogren’s symptoms.
Dry Airways in Sjogren's
The moist mucous membranes that line the nose, sinus, and airways provide the first line of defense against respiratory infections.
Dryness and inflammation disrupt this important part of the innate immune system. This is part of the reason that Sjogren’s patients tend to experience severe or repeated respiratory infections (39).
Many Sjogren’s patients experience recurrent sinusitis, sometimes starting many years prior to diagnosis.
Chronic cough, productive or non-productive, may be the first sign of Sjogren’s disease (79).
Any patient with chronic cough should be evaluated for Sjogren’s lung disease according to the Pulmonary Clinical Practice Guidelines (159).
Sjogren’s lung disease is common and underdiagnosed. Chronic cough should not be attributed to dryness until lung disease, GERD, and/or laryngopharyngeal reflux (LPR) have been ruled out.
Severe airway dryness damages the mucosal surfaces of the airways and may damage nerves.
This may lead to bronchiectasis (dilation and inflammation of the medium sized airways) and contribute to compromised lung function and/or pneumonia (214, Ch. 28). Bronchiectasis and other Sjogren’s airway diseases are sometimes misdiagnosed as asthma/ bronchitis.
Sicca is one of many Sjogren's features. It is present in most, but not all, Sjogren's patients. It is important to monitor and manage sicca, even when symptoms are mild.
Updated 11-21-2022