Sjogren’s syndrome: Advice from a registered dental hygienist

I have been a practicing dental hygienist for over 11 years now, and three years ago I was diagnosed with Sjogren’s syndrome. I went from a low- to high-risk caries patient overnight. I went from never having a cavity to now having several areas of concern. I went from knowing what dry mouth products were out there to buying and trying countless products in a desperate search for something that would relieve my discomfort.

About Sjogren's

It is my hope to raise awareness about Sjogren’s syndrome and the different ways we, as hygienists, can help our Sjogren’s and dry mouth suffering patients. Sjogren’s is an autoimmune disorder that affects 0.1% to 4% of the population, women 10 times more often than men. The average age at diagnosis is 45-60.¹ That said, I was 36 at the time of my diagnosis and I know many other women who were diagnosed at even younger ages. Because Sjogren’s has such broad symptoms that can mimic various other conditions, it sometimes takes several years to arrive at the correct diagnosis. Once diagnosed, multiple labs are done to determine whether the patient has primary or secondary Sjogren’s.

Early detection and diagnosis

As hygienists, we can help detect this disorder early on. We hear complaints of dry mouth from our patients on a regular basis, but it is important that we investigate those complaints. Hygienists are good at asking questions, so we need to ask such patients about their medications and if they have any other symptoms. For example, does the patient also suffer from dry eyes? That was always my number one complaint, and finally my medical doctor decided to test me for Sjogren’s.

Sjogren’s syndrome attacks the lacrimal and salivary glands primarily, but I can tell you from firsthand experience that it attacks much more than that. It also dries out tissues in the esophagus and lungs, which means that Sjogren’s patients often deal with frequent acid reflux and even lung infections. Sjogren’s patients are at an increased risk for lymphoma as well, so a thorough extraoral exam and checking lymph nodes carefully is important for these patients. Sjogren’s can cause swelling of the parotid glands, so it’s important that we are aware of that and counsel our patients accordingly. I have personally woken up to pain and swelling of my parotid gland and if I weren’t a dental professional, I would have likely called my dental office for advice.

Diet

We know the importance saliva plays in our oral health, and I have counseled patients suffering from dry mouth for years. However, becoming that patient has completely changed my perspective. I never realized how much quantity of saliva impacted my food and drink choices prior to my diagnosis. When you have dry mouth and have very little saliva, it is difficult to eat certain things. For example, I have always loved crackers and complex carbohydrates—I know, not great snack choices—but now those things are very difficult to eat. It is difficult to drink carbonated beverages because my throat stays so dry, the carbonation burns. And because keeping my mouth at a neutral pH is so difficult due to the lack of saliva, I have become very aware of my sugar intake. But it is not just the dryness that has changed my eating and drinking habits, it is also the sensitivity of my mouth in general. And this holds true, not just for Sjogren’s sufferers but for dry mouth sufferers as well, when there is little saliva you are much more prone to mouth irritations. These patients are more prone to mouth ulcers/lesions and thrush. Nutritional counseling is incredibly important for dry mouth patients. Thankfully, I had a good background in nutrition and the changes I needed to make to keep my mouth healthy, but a lot of our patients don’t know what to change in their diet. Often our patients don’t realize the impact their diet has on their oral health, especially patients suffering from dry mouth.

Medication

As I said previously, diagnosing this condition is a process that takes time and usually several different health professionals. Unfortunately, there is no treatment for Sjogren’s. There are medications that may help slow the progression, but they can have serious side effects. For Sjogren’s patients, managing symptoms is the goal. I have researched multiple products and have formulated a regimen that is working for me.

I will say that, through my own journey of searching for relief, telling patients about a dry mouth product is not enough. Let’s be honest, when you are working on a 45-60-minute schedule and are tasked with all of the things that need to be done in that appointment time, having a long discussion about dry mouth isn’t very realistic. But whether it’s an older adult that is dealing with dry mouth due to age, a patient that is medically compromised and dealing with drug-induced dry mouth, or someone in their thirties who looks perfectly healthy but is fighting the Sjogren’s battle, sending them down the dental aisle at a drug store isn’t enough.

It has taken years for me to find products that work, and one product alone hasn’t been enough to relieve my symptoms. I use different products for different things; as I said, it is a regimen. I have found great success with Sunstar’s Hydral rinse and relief gel, and I use XyliMelts each night, and drink a gallon of water a day. We need to counsel these patients on their home care and offer fluoride varnish and prescription toothpaste to be used at home, in addition to an extra cleaning every year. Sjogren’s patients need to be on a shorter recall.

Raising awareness

I have learned so much about Sjogren’s and dry mouth conditions over the last three years. I can honestly tell you that Sjogren’s and dry mouth affects you all day, every day and night. Dry mouth is a miserable condition, it affects so many things from your voice tone to the types of foods you choose to eat. It is critical for Sjogren’s patients to have an informed dental team. I am taking my own experiences and sharing what has worked for me with the patients I serve in nursing facilities, in hopes of providing some relief. These patients need more attention and help from us, their hygienists and oral health champions.

The next time you have someone in your chair complaining of dry mouth, I hope you will think back to this story, and take a little extra time with that patient to help them form a plan to tackle this chronic, destructive condition. While having this disease has given me a unique perspective, it has also ignited a passion and desire to share my story and to help fellow Sjogren’s sufferers.

Reference

Sjögren syndrome. US National Library of Medicine. August 17, 2020. https://ghr.nlm.nih.gov/condition/sjogren-syndrome#statistics

Brooke Crouch, RDH, is a remote supervision dental hygienist, outreach coordinator, advocate, educator, oral health champion, consultant, and volunteer. She has successfully advocated for a dental policy change to Medicaid in Virginia, and for a law change allowing medical assistants to apply fluoride varnish to children. Crouch is vice president of the American Mobile Dentistry Alliance and chairs and sits on several clinical advisory, oral health action, and community-based boards and committees. Contact her at [email protected].