But you don't look sick: Sjogren's syndrome and dental products

Editor's note: This article was originally published in 2017 and has been updated June 2024.

Last March I traveled to Cherry Hill, New Jersey, to attend a patient-centered conference. The weather outside was cool. A steady, light rain fell throughout the first day, an irony not lost on the attendees. Moisture was the one thing they were looking for in their lives.

As I listened to the opening remarks from the CEO of the Sjögren’s Syndrome Foundation (SSF), it became apparent that dental professionals need a greater understanding not only of Sjögren’s syndrome, but of autoimmune disorders in general. The next two days humbled me. I heard some wonderful speakers and I met dozens of people who were desperate for answers. Many shared their plights as they hoped for answers from the speakers. Four hundred and forty people just wanted to get their lives back on track, or find ways to ease the burden of this syndrome on their loved one.

Sjögren’s syndrome was first described in medical literature in 1888 by British physician W. B. Haddin, who described a 65-year-old white female with a seven-month history of progressive dry mouth. Her symptoms included difficulty in swallowing, frequent fluid intake, and dry eyes. While the patient’s overall appearance was normal and her vital signs were not unusual, Dr. Haddon described her tongue as “red, devoid of epithelium, and cracked in all directions like a crocodile’s skin.” In a 1933 paper, Swedish ophthalmologist Sir Henrik Sjögren was the first to describe the three key symptoms - dry eyes, dry mouth, and arthritis.

Cause remains a mystery

The exact cause of Sjögren’s is not known. Researchers believe that genetics, hormones, and environmental factors are responsible for the condition. Some suspect Sjögren’s develops as a result of a viral infection in a genetically susceptible host. Today Sjögren’s is classified as an inflammatory condition. The body destroys the lacrimal glands and salivary glands that produce moisture in the eyes and mouth. Over time, patients experience a decrease in moisture flow, as well as a reduction in moisture quality. A 2016 study conducted by the SSF found that 92% of all respondents reported both oral and ocular dryness, which are known as sicca symptoms. Fatigue and muscle and joint pain are also common, with two-thirds reporting severe levels of all three symptoms.

Along with the difficulty of getting an early and accurate diagnosis, autoimmune disorders tend to cluster. It is not uncommon for siblings or other family members to be diagnosed with the same or other autoimmune conditions. It is also common for someone with primary Sjögren’s to have an autoimmune thyroid condition such as Hashimoto’s thyroiditis or Graves’ disease, rheumatoid arthritis, or lupus. Conversely, someone with rheumatoid arthritis is at an elevated risk for Sjögren’s or other disorders. One third of those with Sjögren’s have at least one additional autoimmune disorder that is diagnosed either before or after Sjögren’s.

Quality of life issues

The financial burden of medical care, medications, and time off work is staggering. The quality of life issues can be overwhelming. Many conference attendees reported being under the care of five to six medical providers, a team trying to provide relief from the multiple symptoms. As Sjögren’s progresses, pulmonary issues, vasculitis, and lymphomas can develop. It is estimated that between 40% and 60% experience neurological conditions that affect both the central and peripheral nervous systems, often as early as a decade before the sicca symptoms appear. Neuropathies that affect both sensory and motor functions are not uncommon.

Saliva and tears are more than water; they are complex body fluids with properties that support health. Healthy saliva is a rich complex of proteins, mucins, and lipids suspended in a watery base. Without adequate saliva, patients are at increased risk for caries, periodontal disease, and fungal infections. The drier the mouth, the higher the risk for oral disease.

Despite the importance of saliva, salivary evaluations are rarely included in the initial patient exam or during periodic reevaluations. A quick visual inspection is not an accurate salivary assessment. Precise data are important for several reasons. Clinicians should establish a baseline reference point and have a clear understanding of conditions over time that are based on repeated testing to gain accurate reference points. Documenting salivary data allows clinicians to prescribe appropriate clinical or self-care solutions, monitor any changes, and evaluate the effectiveness of any prescribed regimens. Anyone on the dental team can collect and record this data.

Helpful dental products

There are many factors that impact daily salivary flow. A healthy individual will produce between 0.5 to 1.5 liters of saliva daily. The related sidebar lists the steps required to determine resting and stimulated salivary flow rates. An adequate resting flow rate is between 0.25 and 0.4 ml per minute. Stimulated salivary rates should be between 1 to 3 ml per minute. Those with rates that fall below these parameters are classified as having dry mouth. At a minimum, it is easy to document salivary pH with a product such as phID, which is available from Forward Science.

GC America’s Saliva-Check Buffer Kit includes components to collect five data points that provide a comprehensive evaluation of a patient’s saliva. The protocol includes testing the resting saliva production rate, consistency, and pH, and evaluating the quantity and buffering capacity of the stimulated saliva. Clinicians armed with this information can provide an individualized treatment protocol aimed at a patient’s specific needs.

There is an increasing awareness among dental professionals about the importance of healthy saliva. We have numerous options to help improve oral wellness by stimulating salivary flow rates or improving the overall composition of saliva. To achieve optimal success, products must be used continuously over time. Sipping water throughout the day may seem like a logical and simple solution, but this tactic has the potential to dilute the salivary mucins and proteins, components necessary to protect mucosal integrity and health.

Fluoride is an important preventive component for reducing decay risk and increasing remineralization; however, fluoride use in those who have no saliva presents a significant challenge. Calcium and phosphate need to be present for fluoride to incorporate into tooth structure. Saliva is the primary source of oral calcium and phosphate, so a certain amount of saliva is necessary for fluoride products to be effective.

There are a wide range of products that contain fluoride. Common prescription preparations include 1.1% sodium fluoride products such as 3M’s Clinpro 5000 with tricalcium phosphate, or Colgate’s Prevident 5000 toothpaste. Over-the-counter fluoride products are increasing in popularity and many are available online. While formulations vary, the total fluoride level is much less than prescription formulations. Some popular options include 3M’s Clinpro Tooth Crè;me, Premier’s Enamelon, and Colgate’s Enamel Health toothpaste.

Products that contain arginine bicarbonate calcium carbonate rely on oral microbes to produce metabolic waste products to raise and sustain oral pH at seven, a level that facilitates the deposition of both calcium and phosphate into existing tooth structure. In contrast to fluoride-based products, products using arginine technology do not require salivary moisture to achieve a beneficial outcome.

Tom’s of Maine Rapid Relief Sensitive toothpaste and BasicBites chews are nonprescription products that contain sufficient amounts of this arginine compound to accomplish this goal. Daily use can create and support healthy saliva. Theodent is another nonprescription toothpaste that uses a unique theobromine/mineral complex to help remineralize tooth structure.

Stimulating salivary flow can be challenging. Many people experience an improved flow rate by using products that contain xylitol. Chewing xylitol gum stimulates flow for two reasons - chewing and the effect of xylitol on salivary glands. However, some experience TMJ or muscle fatigue from excessive chewing.

Allday spray is a supersaturated 44% xylitol liquid formulated with a muco-adhesive complex. The flavor is a very light mint, and the liquid is more viscous than other mouth sprays, which enhances the protection of soft tissues.

Several companies offer xylitol lozenges or candies. Two unique products in this category are Nuvora lozenges, which dissolve slowly and have the added antimicrobial benefit of essential oils, and XyliMelts, 100% xylitol discs with a vegetable adhesive backing. This allows users to position the disc just above the maxillary molars opposite the parotid gland to facilitate salivary flow.

Another approach to alleviating the devastating effects of oral dryness is prescription powders mixed with water, which create a supersaturated calcium phosphate oral rinse that can be used two to 10 times a day. NeutraSal has been available for several years and SalivaMAX is the newest entry in this category. After regular use for a few days, patients achieve oral comfort since the electrolyte concentration of the rinse is equal to that of human saliva.

Most of us have experienced dry eyes. The speaker who addressed ocular issues at the conference provided some very interesting information. Those who develop the sicca symptoms from Sjögren’s or other autoimmune disorders are at increased risk for infection, an abraded cornea, blurry vision, and eyelids that get stuck closed during sleep due to the lack of blinking. A patient’s dry eye syndrome can be a combination of insufficient aqueous volume and rapid tear evaporation.

On average, most people blink every seven seconds, which is about 8,000 blinks per day. Not surprisingly, many people now suffer from computer vision syndrome, a condition that can cause damage to the gland in the eyelids. Blinking helps keep the eyes moist and healthy. Those spending three to four hours a day staring at a screen can have a blink rate reduction of 50% to 60%.

Tears are Mother Nature’s first line of defense against microbes, and adequate tear production supports comfort. Since those with Sjögren’s have a compromised quantity and quality of tear film, it is estimated that the eyes can have up to six waking hours where the surface of the eye is left without adequate tear protection.

Conference attendees said repeatedly that they did not want anyone to know they had Sjögren’s. Since their outward appearances could easily conceal the turmoil going on inside their bodies, attendees said it is often hard for people to realize how sick they are.

They were tired of hearing platitudes like “You don’t look sick at all.” Others described how anxious they feel as their funds dwindle in a desperate attempt to keep up with their increasingly complex medical situations. While social security disability is one avenue to ease the financial burden, the process is long and arduous, generally taking many years to get an application approved.

It was clear that Sjögren’s and related autoimmune conditions turn people’s lives upside down. As I left the conference, it became abundantly clear to me that dental professionals can have an active role in the early and accurate diagnosis of Sjögren’s and other autoimmune disorders.

We also have knowledge that can improve the oral comfort level and quality of our patients’ lives. Start looking for signs and symptoms. Start asking questions, and start offering real solutions beyond simply sipping water.

At war with itself

Autoimmune disorders are a body at war with itself. Many different conditions bear the classification of autoimmune, and many other health conditions have symptoms that mimic autoimmune disorders. Obtaining an accurate diagnosis can be very challenging. Adults who suffer from Sjögren’s have two primary symptoms - dry eyes and dry mouth. While children and adolescents do develop Sjögren’s, it is not a common illness for those age groups. Only about 8% of the children and adolescents with Sjögren’s have dry mouth or dry eyes, while between 40% and 60% of children with Sjögren’s experience swollen parotid glands as a primary clinical presentation.

Ninety percent of those diagnosed with Sjögren’s are women. This is typical for autoimmune dis orders in general; however, there is speculation that the prevalence among males may be higher but goes underdiagnosed. As recently as 2012, it took nearly six years to get an accurate diagnosis. By 2016, the average time frame to be diagnosed was about three years.