Sjögren's Disease

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Sjögren's Disease (aka Sjögren's Syndrome)

What is Sjögren's Disease?

According to The Sjögren's Foundation Sjögren's Disease (aka Sjögren's Syndrome, pronounced “SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathy and lymphomas. Today, as many as four million Americans are living with this disease.

As a systemic disease, affecting the entire body, symptoms may remain steady or worsen overtime. There is no one single progression of the disease and this can make it challenging for patients and their physicians. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatments are important as they may prevent serious complications and greatly improve a patient's quality of life.

About half of the time Sjögren's occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as Rheumatoid Arthritis, Lupus, or Scleroderma.

In addition, Sjögren's is often misrepresented as a rare disease, however it is estimated that there are four million Americans living with this disease, making it one of the most prevalent autoimmune diseases. We need more Sjogren's support for patients,

Nine out of ten Sjögren’s patients are women. The average age of diagnosis is late 40s, although it can occur in all age groups, including children, and in both sexes."

*Please Note* Aimee/EBE finds the Sjögren's Foundation to be a reliable source for Sjögren's information and resources, although info is available through other well-recommended sources such as MAYO clinic and NIH. The Sjögren's Foundation is not the only Sjögren's patient organization in existence, but it is one that I have found super helpful and excellent with participating in patient advocacy. Please refer to your own healthcare team regarding your health care questions and needs. EveryBody Empowered and Aimee Zehner do not offer medical advice. We are only sharing public, available information. Thank you. #sjogrens #sjogrenssyndrome #sjögrensdisease #sjögrens

Sjögren's Symptoms

"While many patients experience dry eyes, dry mouth, fatigue and joint pain, Sjögren's can also cause dysfunction of organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients also have a higher chance of developing lymphoma."

For Sjögren’s patients, inflammation of tear-secreting glands reduces tear production, resulting in chronic dry eye. In addition, changes in the composition of tears contribute to dry eye. In people with dry eye, thin spots in the tear film may appear and the tears no longer adequately protect and support the health of ocular surface tissues.

In Sjögren's, a patient's white blood cells mistakenly invade tear and saliva producing glands, causing inflammation and reducing secretion. The age of onset for Sjögren's is typically in the 40s, although many patients are being diagnosed at a younger age as education about Sjögren's increases.

In the autoimmune attack that causes Sjögren’s, disease-fighting white blood cells called lymphocytes target the glands that produce moisture – primarily the lacrimal (tear) and salivary (saliva) glands. Although no one knows exactly how damage occurs, damaged glands can no longer produce tears and saliva, and eye and mouth dryness result. When the skin, sinuses, airways and vaginal tissues are affected, dryness occurs in those places as well."

Symptoms vary from person to person but may include:

Neurological problems, concentration/memory-loss, “brain fog”, dysautonomia, headaches
Dry eyes, corneal ulcerations and infections
Dry nose, recurrent sinusitis, nosebleeds
Dry mouth, mouth sores, dental decay, difficulty with chewing, speech, taste and dentures
Swollen, painful parotid/salivary glands
Difficulty swallowing, heartburn, reflux, esophagitis
Fatigue, vasculitis, lymphoma, dry skin, skin sensitivity to UV light
Recurrent bronchitis, interstitial lung disease, pneumonia
Arthritis, joint/muscle pain
Abnormal liver function tests, chronic active autoimmune hepatitis, primary biliary cholangitis
Peripheral neuropathy, Raynaud’s
Stomach upset, gastroparesis, autoimmune pancreatitis
Irritable bowel, autoimmune gastrointestinal dysmotility
Interstitial cystitis, interstitial nephritis including renal tubular acidosis, glomerulonephritis
Vaginal dryness, vulvodynia; chronic prostatitis

This information above was copied from the Sjögren's Foundation, available here: https://sjogrens.org/understanding-sjogrens/symptoms

For another source on Sjögren's Disease check out the National Institute of Arthritis and Musculoskeletal and Skin Diseases:

https://www.niams.nih.gov/health-topics/sjogrens-syndrome

Sjögren's Diagnostics

According to the Sjögren's Foundation:

"Sjögren’s often is undiagnosed or misdiagnosed. The symptoms of Sjögren’s may mimic those of menopause, drug side effects, allergies, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, physicians, eye care providers and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. The average time from onset of symptoms to diagnosis is 3 years.

When the Sjögren’s Foundation first launched our goal, the average time it took for a patient to be accurately diagnosed with Sjögren’s, from the time they started seeking a diagnosis, was nearly six years. This was something we all agreed was too long, and meant that to achieve our Goal we would need to shorten the diagnosis time to less than three years.

In 2018, the Sjögren’s Foundation 5-Year Breakthrough Goal had the honor to announce that we had not only reached our Goal but had surpassed it, reporting that the average diagnosis time was 2.8 years!

Since all symptoms are not always present at the same time and because Sjögren’s is so complex, physicians and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. (i.e. an eye care provider may be treating dry eye and not realize the patient has other symptoms, or a primary care physician may be treating joint pain but not realize a patient has dryness symptoms too.) Fortunately, the Foundation has been able to reduce the time for a proper diagnosis to 2.8 years, down from over 6 years in just 2012.

How is Sjögren's Diagnosed?

There is no single test that will confirm the diagnosis of Sjögren's and thus physicians must conduct a series of tests and ask about symptoms the patient is experiencing.Rheumatologists have primary responsibility for diagnosing and managing Sjögren's and can conduct a series of tests and ask about symptoms. Your eye doctor or an oral medicine specialist also might run tests if Sjögren's is suspected.Physicians will use a number of tests and questions to determine a Sjögren's diagnosis. These tests may include some of the following:Objective tests used in diagnosis include:

Blood Tests
- SS-A (or Ro) and SS-B (or La): Marker antibodies for Sjögren’s. 70% of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B. Also found in lupus patients.
Eye Tests
- Schirmer test: Measures tear production.
- Rose Bengal and Lissamine Green: Uses dyes to examine the surface of the eyes for dry spots.
Dental Tests
- Salivary Flow: Measures the amount of saliva produced over a certain period of time.
- Salivary Gland Biopsy (usually in the lower lip): Confirms lymphocytic infiltration of the minor salivary glands.
Subjective questions used in diagnosis may include:

Ocular Symptoms*
- How long have you been experiencing dry eye?
- Do you have a foreign body sensation in your eye?
- How often do you use artificial tears each day?
Oral Symptoms*
- How long have you had dry mouth?
- Do you experience salivary gland swelling?
- Do you need liquids to swallow foods?
*These questions are just a sampling of questions a physician may ask a patient.In addition to objective and subjective testing, your physician will also take a complete medical history as well as discuss the various symptoms you may be experiencing. Your physician will then consider the results of all these tests and his/her examination to arrive at a final diagnosis.Further research is being conducted to refine the diagnostic criteria for Sjögren's and to help make diagnosis easier and more accurate.Once diagnosed, the Foundation recommends discussing the Sjögren's Foundation Clinical Practice Guidelines with your physician to review treatment options.The Sjögren’s Foundation is working on various international initiatives to discover and validate better and more specific biomarkers, but until then, diagnosing Sjögren’s can sometimes be an “art” based on the physician’s assessment of symptoms plus objective tests.In 2016, an international group of experts along with the Sjögren’s Foundation, did develop an updated classification criteria for Sjögren’s diagnosis for patients to enter clinical trials. These criteria consider dryness symptoms, changes in salivary (mouth) and lacrimal (eye) gland function, and systemic (whole body) findings. These published classification criteria are designed for use in clinical trials and not for diagnosing patients in a clinic for general management and treatment. As such, they are very strict so that there is absolutely no doubt that a patient has Sjögren’s, something that is important to prove for participating in a clinical trial. Patients that do not meet these criteria can still have Sjögren’s."

The above content copied from The Sjögren's Foundation is available here: https://sjogrens.org/understanding-sjogrens/diagnosis

Finding a Rheumatologist & Other Providers

The Sjögren's Foundation correctly states that "Rheumatologists have primary responsibility for managing Sjögren’s. Patients are also seen and treated by specialists such as eye care providers, dentists and other specialists depending on a patient’s complications."

In my experience, finding the right providers for sjogren's support can be challenging. Getting a Rheumatolgist is definitely the way to go, so you can be evaluated and given testing for Sjögren's Disease (Sjögren's Syndrome) and other potential autoimmune diseases if you're undiagnosed, and to then find treatments that address your symptoms. The Rheumatologist should work closely with your PCP (Primary Care Provider

If various organs are potentially involved with your Sjögren's (refer to the symptom list above), you may need one of these Specialists: Gastroenterologist (digestion/stomach), Nephrologist (kidneys), Pulmonologist (lungs), Dermatologist (skin), Optometrist or Ophthalmologist (eyes) Hematologist/Oncologist (for lymph issues such as lymphadenopathy or lymphoma.

Sjögren's Treatment Options

According to the Sjogren's Foundation:

"Currently, there is no cure for Sjögren’s. However, treatments may improve various symptoms and prevent complications. Prescription medicines for dry eye and dry mouth are available. A number of over-the-counter products may also be used to alleviate different types of dryness. Immunosuppressive medications are also used to treat the serious internal organ manifestations.

A Sjögren's patient’s treatment path should be decided on a case-by-case basis after the potential benefits and side-effects are weighed by patients and their healthcare providers. Since Sjögren’s affects each patient differently, a personalized plan should be developed by you and your physician, dentist, eye care provider and other specialists about how to treat your various symptoms.

In some cases, lifestyle changes can help certain symptoms such as fatigue and gastro-intestinal reflux, and over-the-counter products can help alleviate symptoms such as dryness. Sjögren’s patients are often managed with a combination of management strategies, over-the-counter products and prescription drugs. Most patients will need prescription medications at some point in their disease course to help control their disease and reduce the potential for complications.

A number of different medications are available that can be used to manage symptoms. Currently, no single medication has been conclusively proven to slow the progression of Sjögren’s or treat all aspects of the disease."

Below are a few of the prescription treatments available, but by no means is this an exhaustive list. Talk to your physician for more information.

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)
Corticosteroids
Disease-Modifying Anti-Rheumatic Drugs (DMARDs)
Biologics or Small Molecule and Other Drugs for More Severe Disease
Dry Mouth Prescription Treatments
Dry Eye Prescription Treatments

For the above copied content, and to learn more about available treatment options, please visit: https://sjogrens.org/understanding-sjogrens/treatment

Disclaimer: Please consult with your healthcare team, and include your PCP, Rheumatologist and other Specialists in making treatment decisions. EveryBody Empowered and Aimee Zehner do not offer medical advice, and all questions related to your health, diagnostics and treatments should be directed to your physicians.

Sjögren's Foundation - AWESOME downloadable PDFs

Foundation Brochures (Downloadable PDFs)

What is Sjögren's? (1251 KB)
Dry Eye: Diagnosis and Treatment (224 KB)
Dry Mouth: Diagnosis and Treatment (231 KB)

Foundation Flyers and Infographics (Downloadable PDFs)

This is Sjögren's (205 KB)
Living With Sjögren's Patient Survey Results (467 KB)
This is Sjögren's (Female Body Image) (1.03 MB)
This is Sjögren's (Male Body Image) (959 KB)

ICD-10 Code for Sjögren's

An initiative to revise and update the ICD-10 Code for Sjögren’s, which began in 2017, was coordinated and led by the Sjögren’s Foundation, in partnership with the American College of Rheumatology and with the help and input from a group of multi-specialty experts.

Click Here for More Information (PDF - 1.1 MB)

Clinical Practice Guideline Resource Sheet (Downloadable PDFs)

Rheumatology Clinical Practice Guidelines for Sjögren's
Systemic Manifestations in Sjögren's Patients (PDF - 468 KB)

Oral Clinical Practice Guidelines for Sjögren's
Oral Management: Caries Prevention in Sjögren's Patients (PDF - 103 KB)

Ocular Clinical Practice Guidelines for Sjögren's
Ocular Management in Sjögren's Patients (PDF - 506 KB)

Pulmonary Clinical Practice Guidelines for Sjögren's
Pulmonary Manifestations in Sjögren's (PDF - 1.1 MB)

For more information on Clinical Practice Guidelines CLICK HERE

Resource Sheets for Coping with Sjögren's (Downloadable PDFs)

Symptoms

Brain Fog (PDF - 133 KB)
Burning Mouth (PDF - 114 KB)
Dry Nose and Sinuses (PDF - 112 KB)
Dry Skin (PDF - 99 KB)
Muscle and Joint Pain (PDF - 120 KB)
Oral Candidiasis (Thrush) in Sjögren's (PDF - 99 KB)
Pediatric Sjögren's (PDF - 102 KB)
Pulmonary Involvement(PDF - 46 KB)
Raynaud's Syndrome (PDF - 110 KB)
Reflux and Your Throat (PDF - 101 KB)
Rheumatoid Arthritis (PDF - 98 KB)
Sjögren's-Related Lung (Pulmonary) Disease (PDF - 91 KB)
Sex and Sjögren's (PDF - 96 KB)
Tracking Your Symptoms: Work Sheet (PDF - 912 KB)

Tips & Treatments

Brittle Nail Tips (PDF - 96 KB)
Chronic Pain Tips (PDF - 100 KB)
Dental Tips (PDF - 104 KB)
Dry Eye Treatments (PDF - 137 KB)
Dry Mouth Treatments (PDF - 113 KB)
Fatigue Fighters (PDF - 131 KB)
Gastrointenstinal (GI) Tips (PDF - 89 KB)
Gynecology / Urology Tips (PDF - 112 KB)
Salivary Glands Massage (PDF - 526 KB)
Sleep Tips (PDF - 91 KB)
Sun and Sjögren's (PDF - 90 KB)
Swallowing Medications with Dry Mouth (PDF - 93 KB)

Insurance

Dental Insurance Reimbursement Tips (PDF - 101 KB)
Disability Benefits- Tips on Obtaining Them From the Social Security Administration (PDF - 127 KB)
Health Insurance Tips - Part 1 (PDF - 98 KB)
Health Insurance Tips - Part 2 (PDF - 97 KB)

Other

Airline Travel Tips (PDF - 102 KB)
Anti-Inflammatory Diet (PDF - 106 KB)
Clinical Trials 101 (PDF - 102 KB)
Clinical Trials: Getting Involved (PDF - 100 KB)
Pregnancy in Sjögren's (PDF - 108 KB)
Surgery, Hospitals, and Medications (PDF - 125 KB)

Foundation Spanish Materials (Downloadable PDFs)

Esto es Sjögren (PDF - 169 KB)
¿Que es el síndrome de Sjögren? (PDF - 1,177 KB)
El síndrome de Sjögren en los niños (PDF - 485 KB)

If you are a healthcare provider and would like a free set of brochures to display in your office, contact the Sjögren's Foundation at (301) 530-4420.

The Sjögren's Quarterly

The Sjögren’s Quarterly is a medical and scientific newsletter designed to help healthcare providers and researchers keep on top of the very latest news in Sjögren’s research, as well as treatment “best practices”, written and edited by the foremost experts in Sjögren’s.

This newsletter is complimentary to healthcare providers and researchers, and we encourage you to download this form for your healthcare providers to sign-up to receive the Sjögren's Quarterly.
Sjögren's Quarterly Provider Order Form (PDF - 428 KB)

Patients and caregivers can purchase an annual subscription in the Sjögren's Foundation Shop.

Sjögren's Research & Clinical Trials

"Through basic research on the immune system, autoimmunity, genetics and connective tissue diseases, researchers are continuing to learn more about Sjögren’s. As they gain a better understanding of the genes involved and which environmental and hormonal factors trigger the disease, we will be able to develop more effective treatments for Sjögren’s.

Learn about some of the cutting-edge research that the Foundation is funding.

In addition, clinical research is being conducted around the United States. These research projects involve studying patients in a clinical setting to learn more about their symptoms, what treatments work and under what circumstances, and how best to improve quality of life.

Learn more about Clinical Trials"

For this copied content from Sjögren's Foundation and more, visit: https://sjogrens.org/understanding-sjogrens/frequently-asked-questions

Sjögren's Flares (Exacerbation of Symptoms)

Sjögren's Disease, like other autoimmune diseases has a tendency to ebb & flow with symptoms. There may be times you experience ALL of the Sjögren's symptoms you have, or just a few. For example one week you might have worsened dryness, then the other week you experience dryness and worsened swallowing, arthritis / muscle & joint paint, and crippling fatigue. Your symptoms may vary. When you have a "flare" of symptoms or an exacerbation, you would experience an increase of varied symptoms (or specific ones) and the severity of each. Depending on the symptom, your healthcare team may be able to help you with treatments, or there may be non-medical remedies that can assist. It really depends on your symptoms. Check out the many downloadable PDF's from the Sjögren's Foundation, for helpful info and resources.

Sjögren's Friends and Support

Having Sjögren's Disease can be challenging, not only because of physical symptoms (especially when you have other organ involvement), but the mental/emotional and social toll it takes to manage life and the disease. You do not have to go through this alone! Support is available. It is important to connect with others who share in the struggles and challenges involved with this disease. We all need support, info, resources and understanding from others who "get it." Facebook has an ABUNDANCE of Support Groups available for people living with Sjögren's. I encourage you to check them out and see what resonates for you. There are also support groups that include other autoimmune (AI) disease patients, as we share many of the same symptoms and info about potential treatments/remedies and best practices can be shared in these groups.

EBE Coaching Groups & Sjögren's Patients

ENROLLMENT is open for all patients with Sjögren's, and/or other Rare Diseases, Chronic Illnesses or Disabilities, who wish to EMPOWER their lives, gain support and make friends with others just like them in our Support Groups! Our Empowering Support Groups are different from typical disease-focused support groups which often times are not as supportive or empowering as we'd like. Our support groups provide actual support and coaching! We want to help you set goals and achieve them. Make positive changes. Transform your experiences or perspective. Find Resilience and renewed hope. We go beyond discussing our illnesses, but how to improve our lives inclusive of our illnesses like sjögren's syndrome.

Check out our Coaching & Support Group pages to learn more! Everybody Empowered also offers 1-on-1 Individual Coaching for Adults and Teens, Couples Coaching, and Customized Coaching.

Also, if you are interested in having EBE host a private/closed OR open (larger enrollment) Sjogren's Support Group, contact us with your inquiry. We would be happy to customize a Group for you, your patients, or organization, or 5+ Sjögie patients/friends/family. Let us know how we can empower you!

If you are interested in joining EveryBody Empowered's Unique Coaching Groups, scroll down on this page to get a sneak peak, or click the button below to head over to our Coaching Groups page:

Sjögren's Coaching Group Inquiry

Sjögren's Advocacy

The Sjögren’s Foundation Awareness Ambassador program

"The Sjögren’s Foundation Awareness Ambassador program began in 2011 with the intent to help the Foundation achieve our 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years." Thanks to the help of these amazing ambassadors, we not only met, but we exceeded this goal, taking the time it took to get a diagnosis down from 6 years to 2.8 years!

Important work still continues in helping to increase the awareness of Sjögren’s. Awareness Ambassadors are on the front lines, helping the Foundation achieve their Mission and Vision of providing credible resources and conquering the complexities of Sjögren’s through awareness. They do this by implementing the Foundation’s campaigns, targeted at educating healthcare professionals in their area about the various manifestations of the disease. Together these Awareness Ambassadors have reached thousands of healthcare professionals throughout the country, making a tremendous impact on the landscape of Sjögren's in the medical community. Only when Sjögren’s is recognized as a serious and complex disease will patients receive the care needed."

Learn about our Awareness Ambassador program!

Sign up today to learn how you can become an Awareness Ambassador in your community. Fill out the form here: https://sjogrens.org/get-involved/volunteer/awareness-ambassadors

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PATIENT SUPPORT VOLUNTEERS

"Patient Support Volunteers are seasoned Sjögren's patients who are willing to receive calls from newly diagnosed Sjögren's patients. They provide them with support and Sjögren's information, especially about day-to-day living, coping strategies and available resources. They are encouraged to share their personal experiences with callers but they refrain from giving medical advice.

Over the years that these individuals have been taking calls, thousands of new patients have felt supported and inspired by talking with their peers about the disease and living life with Sjögren's.

The Sjögren's Foundation would like to continue to grow this wonderful support program. We are looking for qualified volunteers throughout the country to be part of our growing support network.

If you are someone who:

Has been diagnosed with Sjögren's for 1 year or more
Has been a member of the Sjögren's Foundation for at least 6 months
Is knowledgeable about Sjögren's & the resources available to newly diagnosed patients
Is known for being a great listener & having a positive outlook

This could be the perfect volunteer opportunity for you!

If you are interested in becoming part of our team of volunteers, please submit the short application (see link below) regarding your interest in participating in this program."

https://sjogrens.org/get-involved/volunteer/volunteer-as-patient-support

Advocacy Info above was copied directly from The Sjögren's Foundation. See related links to view on their site.

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