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Member benefits include:
- A subscription to the Sjögren's Foundation patient newsletter: This newsletter contains the latest information on Sjögren's, practical tips for daily living, and answers to medical questions from the experts.
- A New Member packet with helpful information about Sjögren's and the SSF.
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- Providing the Foundation with one more voice to increase awareness, educate others, and encourage research – all of which help in the fight to conquer Sjögren's.
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coping with sjogren's,
If you missed the SSF 2019 National Patient Conference, you can now get all the vital information you need in an audio format!
Seven of our most popular talks from the Sjögren's National Patient Conference held in Woburn, Massachusetts, are available for purchase. Each talk is 30-40 minutes long and comes with the handouts used by the presenter so you can follow along.
Available Audio Talks from the 2019 National Patient Conference:
- The Complexities of Sjögren’s: An Overview, by Theresa Lawrence Ford, MD
- Oral Manifestations of Sjögren’s, by Vidya Sankar, DMD, MHS
- Fatigue and Sjögren’s, by Donald E. Thomas, Jr., MD
- Understanding Blood Changes and Lab Results, by Alan N. Baer, MD
- Ocular Manifestations of Sjögren’s, by Esen K. Akpek, MD
- Nutrition, Wellness and Autoimmune Disease, by Lauri Lang, RDN, LDN
- How Sjögren’s Can Impact the Central Nervous System, by Edward A Maitz, PhD
(You must be logged in to purchase at the Member Price. Double check that you are receiving the correct price before finalizing your purchase.)
These audio presentations are an excellent way to have a permanent resource with some of the most vital information available to Sjögren's patients. Purchase just the talks you want to hear or purchase the whole set!
Click here to order one of our available 2019 talks or you can order by calling our office toll-free at 1-800-475-6473.
National Patient Conference,
Central Nervous System
Research has shown that Sjögren’s patients have an increased incidence of taste disorders – both diminished taste (hypogeusia), loss of taste (ageusia), and altered or abnormal taste (dysgeusia). A great deal of the problem comes from a deficiency of saliva. Flavors in food need to be in solution to be fully tasted; that is one of the important functions of saliva. Saliva also helps protect the mucosa and oral structures, including the taste buds. Finally, saliva helps carry food and flavors across the tongue and the taste buds where it can be tasted. Without adequate saliva, there are many ways that taste can suffer.
A full evaluation is recommended since it has been reported that taste also may be affected by medications and by a number of medical conditions. Clinical examination and diagnostic procedures may identify other potential causes for taste complaints such as nasal polyps, viral infection, oral candidiasis, neoplasia, malnutrition, metabolic disturbances, or chemical and physical trauma. Also, complaints of taste loss need to be differentiated from alterations in flavor perception, which is primarily related to your sense of smell.
There is no specific treatment for the taste disorders found in Sjögren’s. However, using liquids to wet the food in your mouth may help increase the taste. You can also try increasing the seasoning on foods and see if it improves the taste. However, be careful not to use excessive amounts of sugar or salt, which can have negative health consequences. Since a reduction in salivary flow may concentrate electrolytes in the saliva, resulting in a salty or metallic taste, drinking plenty of fluids while eating may help reduce dysgeusia.
Although it is controversial, some authors recommend zinc supplements in cases of taste problems. Using an over-the-counter preparation like Z-BEC, one tablet per day, will assure that you are receiving adequate amounts of zinc.
by Philip C. Fox, DDS
Oral Candidiasis (Thrush),
Sweling in the mouth,
Loss of Taste
In honor of Halloween and trick-or-treating sweets, the Sjögren's Syndrome Foundation would like to remind everyone to pay extra attention to their oral health with today's blog post.
Xerostomia or dry mouth is among the most common symptoms experienced by Sjögren’s patients. Dental care is extremely important to those who experience dry mouth because a decrease in saliva ow has many negative effects on overall oral health.
Saliva not only serves a natural lubricant that keeps our mouth moist and comfortable, but it also plays an important role in the health of our teeth and gums. Minerals in saliva help to neutralize acid and assist in the enamel repair of our teeth. Saliva also acts as a natural rinsing agent reducing the amount of bacterial plaque buildup on our teeth and gums. Plaque is a film of bacteria and sugars that forms on our teeth and leads to tooth decay (cavities) and gum disease if not removed properly.
Our toothbrush serves as the most important tool to remove bacterial plaque from the tooth surface. Brushing at least twice a day for 2 minutes will help to remove sticky plaque from the teeth, reducing the risk of developing cavities. Sonic toothbrushes are an excellent option for patients with Sjögren’s. These brushes are shown to remove more plaque than manual toothbrushes because of the high intensity vibrations that they generate. Sonic toothbrushes create an average of 30,000 brush-strokes per minute as compared to an average of 300 with a manual toothbrush. The vibration created by the sonic toothbrush also drives fluid between the teeth and along the gum line. This can aid in stimulating the gum tissue and which can sometimes become sensitive with a chronically dry mouth. Using a soft or extra soft bristled toothbrush is also recommended since lack of saliva can cause the mouth to be more susceptible to cuts and sores.
In addition to brushing, it is important to floss daily to help remove the plaque in between the teeth and under the gum line. If not cleaned effectively, plaque that is allowed to accumulate around the gums can lead to gum disease.
A dry mouth also makes it easier for bacteria to stick to the tongue. This can lead to bad breath and impaired taste. It is recommended to brush your tongue daily with your toothbrush to loosen bacteria from the surface. You can also use a tongue scraper to gently remove bacteria from the tongue.
Because saliva plays such a significant role in the health of our teeth and gums, patients who experience dry mouth are at an increased risk for tooth decay and gum disease. Excellent oral hygiene and regular visits to an understanding and Sjögren’s-knowledgeable dentist and dental hygienists can help reduce the negative effects of dry mouth and keep the patient happy and healthy.
by Erin LaChapelle, RDH, BSDH
This article was first printed in The Moisture Seekers, SSF's patient newsletter for members.
The Sjögren’s Syndrome Foundation (SSF) has developed the first-ever U.S. Clinical Practice Guidelines for Caries Prevention in Sjögren’s to ensure quality and consistency of care for the assessment and management of patients.
The SSF Clinical Practice Guidelines for Caries Prevention in Sjögren’s patients will help dentists, oral medicine specialists and Sjögren’s disease patients determine the best strategies for preventing caries due to dry mouth. The SSF Oral Working Group stresses that identification of potential Sjögren’s patients within the clinical practice is paramount for ensuring proper monitoring, timely treatment, prevention of serious complications, and referral to other specialists who can monitor and manage non-oral aspects of this disease.
Six years ago, the SSF initiated the development of clinical guideline recommendations for medical practitioners in three categories: rheumatology, oral medicine/dentistry, and ocular management. These will help to standardize patient care by giving physicians a roadmap of how to treat and manage their Sjögren's patients.
Click here to view the SSF Caries Prevention Guidelines Summary and Recommendations.
The SSF Sjögren’s Clinical Practice Guidelines initiative is funded fully by the SSF with no corporate or pharmaceutical industry support. The SSF would like to thank our committee chairmen and members of the oral working group for volunteering their time and expertise to develop these guidelines. We would also like to thank all SSF members and our generous supporters for helping to make the dream of Sjögren’s Clinical Practice Guidelines start to become a reality!
Clinical Practice Guidelines,
"I know as a patient with Sjögren’s I am at a higher risk for Lymphoma, is there anything my dentist could be on the lookout for to help catch it early?"
This is true; patients with Sjögren’s have an increased risk for developing lymphoma. Most commonly, the lymphoma associated with Sjögren’s is low-grade non-Hodgkin’s B-cell in nature. Visiting a dentist regularly, at least twice a year, is essential, as early detection may affect treatment.
What does lymphoma in the mouth look like?
The tumors associated with non-Hodgkin’s lymphoma usually present as non-tender, slow growing masses that may arise in several areas of the body including the neck or the oral cavity. In the mouth, lymphoma presents as a diffuse, non-tender swelling that may be described as boggy. Occurring with higher frequently in the gingiva, posterior (closer to the throat) hard palate and buccal vestibule (the area between the gums, teeth and cheek), these masses are often red or blue-purple in color.
So what does this mean?
As stated earlier, visiting a dentist regularly and routinely is extremely important for early detection. Additionally, when visiting your dentist, make sure to tell him/her of your history of Sjögren’s. It is important that your dentist conducts a thorough and comprehensive head and neck examination, which includes palpating the cervical lymph nodes (lymph nodes in your neck) as well as lifting the tongue and assessing the lateral borders (teeth sides of the tongue), the hard palate, floor of the mouth, buccal vestibules, soft palate, gingiva and the remaining soft tissues in the oral cavity.
Is there anything I can look out for?
Yes. It is important to visit your physician if you notice a swelling in your neck that persists for more than two weeks. You should also visit your dentist if you notice a swelling in your mouth that remains for more than two weeks. As a rule of thumb, if you notice any lesions in your mouth that remain for more than two weeks, it is recommended that you visit your dentist.
by Lauren Levi, DMD, Dental Oncologist
This information was first printed in The Moisture Seeker, SSF's patient
newsletter for members.
Swelling in the neck,
Sweling in the mouth
Oral candidiasis, or thrush, is a common problem in dry mouth patients.
Thrush can cause oral burning and pain. The appearance of thrush in a dry mouth patient is often atypical and appears as red and irritated instead of the typical white cottage-cheesy. The tongue may show grooves, and the corners of the lips appear red and crusty (called angular cheilitis).
Here are 10 tips that can help manage & treat oral thrush:
- Practice excellent oral hygiene and change your toothbrush frequently when oral candidiasis is active.
- Talk to your dentist or rheumatologist about taking Evoxac® (cevimilene) or Salagen® (pilocarpine) to increase salivary flow.
- Don’t use mouthwashes containing alcohol.
- Limit sugar and foods that contain yeast, such as wine, beer and bread. And increase your intake of acidophilus through unsweetened yogurts with live lactobacillus acidophilus or capsules.
- Avoid caffeine and alcohol, both of which can increase dryness.
- Sip water frequently and rinse after eating or drinking if you can’t brush.
- If you smoke, STOP!
- Clean dental prostheses every day with an anti-fungal preparation and avoid wearing them at night.
- Talk to your dentist about prescription therapies available to help with oral candidiasis. Sometimes a combination of treatments is necessary if the problem is severe.
- For maintenance once thrush is under control, discuss with your dentist frequent use of a magic mouthwash with diphenhydramine, nystatin and Maalox. A chlorhexidine gluconate rinse can also be helpful (and if you wear dentures, it’s good for cleaning those too).
Check the Sjögren's Syndrome Foundation's Product Directory (free of charge to all SSF members) to see the many products available for dry mouth.
This information was taken from the SSF Patient Education Sheet: Oral Candidiasis (Thrush) authored by Nelson L. Rhodus, DMD, MPH, FICD. Dr. Rhodus is Professor and Director, Division of Oral Medicine, School of Dentistry Adjunct Professor, Department of Otolaryngology, School of Medicine, University of Minnesota, Minneapolis, Minnesota. Click Here to view the full SSF Patient Education Sheet: Oral Candidiasis (Thrush)
Oral Candidiasis (Thrush)
Dryness from Sjögren’s may affect any organ in the body that secretes moisture, because the body’s immune system is mistakenly attacking its own moisture-producing glands. Almost every Sjögren’s patient experiences some degree of dry mouth, which is caused by a decrease in both the quantity and quality of saliva.
Saliva plays an immensely important role in the oral cavity, which is why proper dry mouth care and attention is critical for a person’s overall oral health. If dry mouth persists for months or years, the decreased salivation can lead to many oral complications such as severe and progressive tooth decay, oral infections (particularly fungal), difficulty swallowing, or a combinations of these. Dr. Rhodus explains more below about the importance of saliva:
"A human being normally produces approximately 1.5 liters of saliva per day. There is a typical diurnal circadian rhythm in the production of that saliva with one peak in the mid-morning followed by a relative decrease until the second peak occurs around early evening.
Saliva flow normally is decreased at night. Saliva is produced by several glands: the submandibular glands (which lie bilaterally just under the posterior jaw) produce most of the quantity of saliva (45%) and it is a mixed fluid with both mucous (thick, stringy fluid) and water but containing most of the proteins; the paired parotid glands (which are in the mid-face just in front of the ears) produce primarily serous (or watery) fluid and accounts for about 35% of the total quantity; the sublingual glands (again in a pair just beneath the anterior tongue) are much smaller and contribute only about 10% of the total volume; and finally there are hundreds of small minor salivary glands in the lips, palate and throat which contribute a relatively small, but important portion of natural salivary flow.
The normal quantity of saliva naturally provides necessary oral lubrication and moisture to assure comfort and function for the individual, but saliva does much more than that. At least equally as important as this volume of saliva, if not more so, is the composition of saliva, which is rich in constituents which have potent digestive, coating, protective, antimicrobial, antiacid, lubricative and homeostatic properties. Saliva is much more than water. In fact, saliva contains approximately 60 important, protective constituents including: immunoglobulins,electrolytes, buffers, antimicrobial enzymes, digestive enzymes and many others, all of which make saliva an essential contributor to the health and homeostasis of the oral cavity. This is the reason that water or artificial salivas are a poor substitute; none of them have the rich composition of ones own natural saliva."
This post is the introduction from "The Importance of Silvia" article written by Nelson L. Rhodus, DMD, MPH, FICD, that was first published in The Moisture Seekers, SSF's member newsletter. SSF members can click here to read the full article on the members section of the website.
Sicca is a word derived from the Latin siccus, meaning “dry.” Dryness of the exocrine glands, particularly the eyes and mouth, is referred to as “sicca syndrome” or “sicca complex” when there is no evidence of autoimmune disease present. While sicca symptoms occur in the vast majority of Sjögren’s patients, not everyone with these symptoms has Sjögren’s. Because of this, it is important to establish an autoimmune cause for the dryness. Sometimes other causes may be found, such as radiation therapy to the head, certain medications, or Hepatitis C or HIV infections. If no cause is found, the patient should be followed carefully for possible Sjögren’s because it sometimes takes years for the diagnosis to become clear.
Dryness from Sjögren’s may affect any organ in the body that secretes moisture. In addition to changing the quantity and quality of saliva and tears, dryness may manifest in the airways, nasal passages, sinuses, throat, skin, and in women, the vagina. Some Sjögren’s patients initially present with recurrent sinus infections, severe vaginal dryness, chronic dry cough, and so on. All types of specialists, not just eye doctors and dentists, need to keep Sjögren’s in mind as a diagnostic possibility, especially when dryness is severe, persistent, or accompanied by systemic symptoms such as fatigue and widespread muscle and joint pain. Dryness can be quite serious, causing dental disease, eye pain and even visual impairment. However, these issues should not detract from the often missed point that Sjögren’s is much more than sicca syndrome. Sjögren’s is a serious systemic autoimmune disease that can affect almost any organ in the body.
-Sarah Schafer, MD
This information was first printed in the April issue of The Moisture Seeker, SSF's patient newsletter for members.
While the exact reasons are unknown, many patients with Sjögren’s suffer from gastroesophageal reﬂux disease (GERD). This can cause a wide variety of symptoms that can be mistaken for other conditions. Symptoms may include persistent heartburn and/or regurgitation of acid, stomach pain, hoarseness or voice change, throat pain, sore throat, difﬁculty swallowing, sensation of having a lump in the throat, frequent throat clearing and chronic cough (especially at night time or upon awakening).
Tips for combating gastroesophageal reﬂux in the throat:
1. Avoid lying ﬂat during sleep. Elevate the head of your bed using blocks or by placing a styrofoam wedge under the mattress. Do not rely on pillows as these may only raise the head but not the esophagus.
2. Don’t gorge yourself at mealtime. Eat smaller more frequent meals and one large meal.
3. Avoid bedtime snacks and eat meals at least three-four hours before lying down.
4. Lose any excess weight.
5. Avoid spicy, acidic or fatty foods including citrus fruits or juices, tomato-based products, peppermint, chocolate, and alcohol.
6. Limit your intake of caffeine including coffee, tea and colas.
7. Stop smoking.
8. Don’t exercise within one-two hours after eating.
9. Promote saliva ﬂow by chewing gum, sucking on lozenges or taking prescription medications
such as pilocarpine (Salagen®) and cevimeline (Evoxac®). This can help neutralize stomach acid and reduce symptoms. Check the SSF's Product Directory (free of charge to all SSF members) to see the products available.
10. Consult your doctor if you have heartburn or take antacids more than three times per week. A variety of OTC and prescription medications can help but should only be taken with medical supervision.
The SSF thanks Soo Kim Abboud, MD for authoring this Reﬂux and Your Throat Patient Education Sheet. Dr. Abboud is an Assistant Professor with the Department of Otolaryngology, Head and Neck Surgery, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania.
Top 5 Tips,