Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Clinical Practice Guidelines for Oral Management in Sjögren’s Patients: Caries Prevention

Posted on Mon, Oct 10, 2016

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.

Oral_Disease_Recommendations.png 

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!  Click here to view the U.S. Clinical Practice Guidelines for  Oral Management in Sjögren’s Patients: Caries Prevention

 

Topics: Dry Mouth, Sjogren's, Tooth Decay, Treatment, Clinical Practice Guidelines, Caries Prevention

Ask the Expert: Sjögren’s & Lymphoma

Posted on Fri, Oct 30, 2015

Question_and_Answer "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.

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Topics: Diagnosing Sjogren's, Dry Mouth, Sjogren's, Treatment, Swelling in the neck, Lymphoma, Sweling in the mouth

Top 10 Tips for Burning Mouth from Oral Candidiasis (Thrush)

Posted on Tue, Jan 20, 2015

SSF_Color_LogoOral 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:

  1. Practice excellent oral hygiene and change your toothbrush frequently when oral candidiasis is active.

  2. Talk to your dentist or rheumatologist about taking Evoxac® (cevimilene) or Salagen® (pilocarpine) to increase salivary flow.

  3. Don’t use mouthwashes containing alcohol.

  4. 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.

  5. Avoid caffeine and alcohol, both of which can increase dryness.

  6. Sip water frequently and rinse after eating or drinking if you can’t brush.

  7. If you smoke, STOP!

  8. Clean dental prostheses every day with an anti-fungal preparation and avoid wearing them at night.

  9. 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.

  10. 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).
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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)

Topics: Dry Mouth, Symptoms, Sjogren's, Treatment, Thrush, Burning mouth, Oral Candidiasis (Thrush)

Sjogren's & The Importance of Saliva

Posted on Tue, Oct 28, 2014

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:

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."

Learn Sjogren's Coping Tips From a Patient Download the SSF Self-Help Booklet

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 newsletterSSF members can click here to read the full article on the members section of the website.

Topics: Sinuses, Sicca, Dry Mouth, Symptoms, Sjogren's, Saliva, Burning mouth

Sjogren's Vs. Sicca Syndrome

Posted on Thu, Aug 21, 2014

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. 

tms cover 2014 April

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. 

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Topics: Diagnosing Sjogren's, Dry Nose, Sinuses, Sicca, Dry Mouth, Dry Eyes, Symptoms, Sjogren's, Fatigue, Vaginal Dryness, Chronic Cough

Top 10 Tips for Combating Gastroesophageal Reflux

Posted on Tue, Jun 17, 2014

describe the imageWhile 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.

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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.

Topics: Dry Mouth, Symptoms, Sjogren's, Treatment, Top 5 Tips, Saliva, Gastroesophageal Reflux, Chronic Cough, Heartburn

What is Sjögren’s?

Posted on Fri, Feb 07, 2014

Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands, significantly decreasing the quantity and quality of saliva and tearsThe disease was first identified by a Swedish physician, Henrik Sjögren, in 1933.

Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren’s may cause dysfunction of other organs, affecting the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the nervous system. Patients also have a higher risk of developing lymphoma. 

Today, as many as four million Americans are living with this disease. Learn more about Sjögren's and the Sjögren’s Syndrome Foundation in this short video:

Watch Steven Taylor, SSF CEO, talk more about the Foundation and the work being done to fulfill our mission of helping patients cope with their Sjögren's, increase awareness, and support research, in this ten question interview:

The SSF exists only because of its members and supporters.

By adding your voice to the fight against Sjögren’s and becoming a member, you are helping to strengthen our organization. When bound together, these voices help the SSF when we advocate for new treatments, new coverage for health insurance and when talking to companies about supporting the SSF.

With each member, the SSF voice will get stronger and we will finally make Sjögren’s a household name. 

Please join with us!

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Topics: Dry Mouth, Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Advocacy

Dental Insurance with Sjogren’s

Posted on Fri, Sep 14, 2012

Dry mouth, a hallmark symptom of Sjögren’s, is a decrease in both the amount and quality of saliva, causing tooth decay.  This is why Sjögren’s patients often experience large dental bills that are not considered part of major medical insurance.

dry mouthWhile there is no easy answer to this problem, there is an appeal process to have dental bills covered by medical insuance that many SSF members have had luck with.

We face a tradition in which dentistry and major medicine have been treated separately for a long time by insurance companies and even many medical professionals and educators. This is unfortunate, because the mouth often mirrors the body – in other words, oral health is an integral part of systemic health, and major medical problems often are reflected in the mouth.

What can you do?

The best tool is education. Have your doctor explain to your insurance company that Sjögren’s is a chronic and systemic illness that involves serious oral health complications and treatment. Preventive care and care when problems first arise are critical so that more major problems don’t develop in the mouth and affect the rest of the body. For example, infection in the mouth can spread in the body, and loss of teeth due to dry mouth can impact nutrition. Sjögren’s patients are susceptible to developing non-Hodgkin’s lymphoma, and this complication most frequently is manifested first in the salivary gland.

Share the information on the Foundation’s Website and a copy of the Foundation brochures on Dry Mouth and on Sjögren’s. We need to ensure that our insurance providers and our doctors understand the close connection between the mouth and the rest of the body.

The National Institutes of Health Sjögren’s Syndrome Clinic worked with the Foundation to draft a sample letter that patients can give to their oral care physicians to send to their providers.

Click here for Sample Letter

Please feel free to give this to your doctor to submit to your insurance company.

You also can contact your U.S. Senators and Representative. Click here to find out who your Congressional members are or how to contact them. Tell your Congressional members your story and ask for their help. Don’t forget to share information about your contacts and their responses with the SSF, so we can follow up on behalf of all Sjögren’s patients.

The Sjögren’s Syndrome Foundation is working hard to increase awareness and education about Sjögren’s so that patients can obtain better insurance coverage. We encourage you and others to share your stories so the Foundation can use those stories as we strive to help improve the lives of those with Sjögren’s.

Additional Dry Mouth Resources: 

Topics: Dry Mouth, Symptoms, Sjogren's, Tooth Decay, Advocacy, Health Insurance Reimbursement

Sjogren’s, More Than Dry Mouth and Dry Eyes

Posted on Mon, Apr 09, 2012

One of the main difficulties with diagnosing Sjögren’s is that symptoms vary from person to person. Often patients will visit their dentist for dry mouth or excessive tooth decay and then their primary physician for joint pain and fatigue. This makes it difficult for both the patient and physician to put the symptoms together.

As we continue on the road of achieving our breakthrough goal of shortening the time to diagnose Sjögren’s by 50% in 5 years, it is important to first identify the main reasons why people go to the doctor and seek a diagnosis.

In a recent survey of over 4,000 Sjögren’s patients, it was discovered that the four main reasons patients sought a diagnosis (in order) were:

  • Dry eyes
  • Dry mouth
  • Fatigue
  • Joint pain

While we know Sjögren’s is much more than just the 4 hallmark symptoms of fatigue, joint pain, dry eyes and dry mouth, it is important to note that dry eyes and dry mouth are the two top symptoms that caused patients to seek a diagnosis.

What is also important to note is that in the same survey, dry eyes and dry mouth were ranked #1 and #2 for symptoms patients currently still experience after diagnosis:

Common Symptoms Experienced by Patients Post Diagnosis were:

  • 92% Dry eyes
  • 91% Dry mouth
  • 86% Sleep disruption

This is why, it is imperative that we reach out to dentists, dental hygienists, ophthalmogists, optometrists and rheumatologists with information about Sjögren’s and its hallmark symptoms.These are the physicians who are on the front lines and can help speed up a  diagnosis of Sjögren’s.

So remember, the Foundation offers “Dry Eyes,” “Dry Mouth” and “What is Sjögren’s Syndrome?” brochures to all medical offices, free of charge. We hope you will consider taking some of them to your next doctor visit! Sign up to be an Awareness Ambassador or help us spread the word about Sjögren’s by distributing brochures!

Just call our office and request some brochures and we will mail them to you. Or have your doctor’s office contact us or sign-up online for brochures. Visit www.sjogrens.org or call us at 800-475-6473.

 

Click here to learn about becoming an Awareness Ambassador

Topics: Diagnosing Sjogren's, Dry Mouth, Dry Eyes

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