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

Why doesn’t my doctor understand Sjögren’s?

Posted on Mon, Jan 30, 2017

Why Doesn't my doctor understand Sjogren's .pngLike many Sjögren’s patients, I find it disheartening that most doctors remain unfamiliar with the disease. First diagnosed with dry eyes and corneal abrasions at age 18, I had no idea that something bigger was brewing. Over the next three decades, not one of my multiple eye specialists asked about other symptoms that could have led to a timely Sjögren’s diagnosis. By my thirties, I had a classic Sjögren’s picture of dry eyes and mouth, flu-like fatigue, multiple gastrointestinal problems, chronic sinusitis and widespread musculoskeletal pain. Yet no one put the pieces of the puzzle together, and it wasn’t until I experienced incapacitating symptoms that Sjögren’s was even considered.

Lack of provider awareness would be understandable if Sjögren’s was a rare disease. But Sjögren’s is extremely common, affecting approximately 1% of the US population, mostly adult women.1 This is similar to the number of women living with breast cancer.2 I like to call Sjögren’s “the most common disease no one has ever heard of.”

Sarah Schafer.pngSjögren’s can be debilitating. Despite a high disease burden and increased rates of infection and heart disease, Sjögren’s still tends to be “missed and dismissed.” While direct complications such as lymphoma and organ involvement are often successfully treated, these conditions lead to death in approximately 10% of Sjögren’s patients.3,4

After years of advocating for my own care, I am now using my unique vantage point as a physician-patient to teach primary care providers (PCPs) about Sjögren’s. From discussions with recent medical school graduates, I have discovered that Sjögren’s continues to be glossed over as a mild disease, mostly about managing dryness. Medical students are rarely taught these basics: Sjögren’s is common, serious and always systemic.

The following ten points help to explain why “Sjögren’s neglect” persists in medicine. By understanding what is behind the problem, you can better advocate for yourself as a patient.

  1. Sjögren’s is a complicated disease. It takes a high index of suspicion to recognize that scattered and mostly invisible symptoms may all be related. Most Sjögren’s patients experience the triad of pain, fatigue and dryness. While only the dryness can be measured, doctors must take patient reports of pain and fatigue seriously in order to see the bigger picture. 
  1. Sicca (dryness) symptoms are often overlooked in the primary care setting. Sicca is often the best clue to diagnosis. Yet many patients do not mention dryness to their providers, thinking it unimportant or unrelated to their other symptoms. Physicians and patients alike may not recognize that burning, gritty eyes or difficulty swallowing food without liquids are dryness symptoms. 
  1. Sjögren’s patients usually look well, even when they are quite ill. There are no blood tests that correlate with the severity of the disease. This makes it easy for providers to write off patients as complaining or malingering.
  1. Misdiagnosis is common. Symptoms often overlap with more familiar conditions such as depression, fibromyalgia, hypothyroidism and irritable bowel syndrome. Menopause often unmasks Sjögren’s symptoms that have been brewing for years. While these conditions may co-occur with Sjögren’s, PCPs often fail to consider the possibility of Sjögren’s as the major culprit.
  1. Delayed diagnosis. The typical Sjögren’s patient has a delay of nearly three years until diagnosis. True delays are even longer: many patients describe decades of symptoms before things got bad enough to seek diagnosis. Clearly this needs to change. PCPs need to be taught how to recognize Sjögren’s and take the first steps to diagnosis.
  1. Diagnosis can be difficult. Better tests are needed. There is no one test or group of tests that diagnoses Sjögren’s early and accurately. Many patients who do not have Sjögren’s antibodies (“seronegative”) are told they do not have Sjögren’s. Yet 30% of Sjögren’s patients are in this seronegative group. These patients typically experience even greater delays in diagnosis, because the confirming minor salivary gland biopsy is not always done, and it may take years to turn positive. Normal blood tests do not rule out Sjögren’s!
  2. Patients with serious organ system complications are often misclassified as other autoimmune diseases. This happens largely due to the ongoing misperception of Sjögren’s as a mild disease. These patients may never get properly diagnosed, perpetuating the “Sjögren’s is mild” mythology.
  1. Research neglect. Clinical studies of Sjögren’s lag far behind other connective tissue diseases. While this is changing, this lack of research keeps Sjögren’s under the radar of awareness as an important health issue.  
  1. Until 2016, no standard of care existed for Sjögren’s management. Doctors tend to be highly motivated to practice medicine within the standard of practice in their community. The recently published clinical practice guidelines (CPGs) will be a good first step in providing consistent treatment standards for rheumatologists, ophthalmologists and dentists.
  1. Rheumatologists are not always up to date on Sjögren’s management. There are still some rheumatologists- the very specialists who treat Sjögren’s- who do not consider Sjögren’s to be serious enough to warrant treatment. There are too many present day stories of patients with debilitating fatigue and pain who are refused treatment because the rheumatologist told them that “their Sjögren’s was not bad enough.” Hopefully the CPGs will provide incentive for these rheumatologists to treat Sjögren’s patients sooner. Most Sjögren’s experts with extensive clinical experience believe that treatment slows progression and prevents serious complications.  

As a Sjögren’s patient, what can you do?

  1. Make sure you are being followed by a rheumatologist, ophthalmologist and dentist who are familiar with Sjögren’s and its complications. Take a copy of the new clinical practice guidelines to your next appointment.

  2. Understand that PCPs are unlikely to be well educated about Sjögren’s, due to the many reasons listed above. However, if they are caring for you, it is their job to learn about Sjögren’s. I encourage you to refer your physicians and their office team to the SSF and sjogrens.org. The SSF will provide medical professionals with free materials to help them diagnose and manage Sjögren’s.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

Click Here to Receive our Newsletter  by Becoming an SSF Member

REFERENCES:

  1. Helmick CG, Felson DT, Lawrence RC, et al. National Arthritis Data Workgroup. Estimates of prevalence of arthritis and other rheumatic conditions in the United States, Part I. Arthritis Rheum. 2008;58:15-25
  2. http://seer.cancer.gov/statfacts/html/breast.htm
  3. Brito-Zeron P, Ramos-Casals M, et al. Predicting adverse outcomes in primary Sjögren’s syndrome: identification of prognostic factors. Rheumatology 2007;46:1359-136
  4. Brito-Zeron, P, Ramos-Casals M. Systemic Sjögren’s: More than a sicca disease. http://www.the-rheumatologist.org/article/systemic-sjogrens-more-than-a-sicca-disease

 

Topics: Diagnosing Sjogren's, Sjogren's, Treatment, coping with sjogren's, Clinical Practice Guidelines

How to Talk With Your Family about Sjögren’s

Posted on Thu, Dec 15, 2016

There is a growing body of evidence that rich social support networks are important to overall health, immune function and healing. They improve quality of life and facilitate coping with chronic illness. Conversely, negative social interactions create a stress response that have the opposite effect. Support from family members and close friends can be one of the most important resources for you to draw on when dealing with Sjögren’s. Skillful communication about your illness is key to nourishing the relationships that matter the most to you. This article only attempts to skim the surface of this complex topic. 155698-350x233-talking-with-doctor.jpg

Three characteristics of Sjögren’s create particular communication challenges.

1. Untimely: Sjögren’s is typically diagnosed in the prime of life (40s and 50s), when family responsibilities and careers are in full swing.

While some are lucky enough to have mild symptoms, the majority of patients experience flu-like fatigue, pain and brain fog that demand a new, strict energy budget. Jobs may be lost or hours cut. Frequent medical and dental visits and costly products such as artificial tears strain both schedules and finances. Family dynamics are rearranged by the illness, causing stress, especially if there is little support or strong disagreement about how to meet the new challenge. Single people who become ill may feel particularly vulnerable and alone, wondering how will they ever manage.

2. Uncertain: Early on, many patients have a hard time accepting that this disease will be a lifelong challenge. The sense of loss and fear of long term illness can be profound for both patients and loved ones.

Symptoms may wax and wane for no obvious reason, although they rarely disappear. This can add to confusion and denial. The initial focus of patients and family members is often “how can we x this?” Denial can make adjustment to a new normal even more protracted. Sometimes denial persists for years, until it becomes clear that medications and other interventions cannot bring back “life as usual.”

3. Invisible: Sjögren’s patients tend to look well most of the time, even when feeling quite ill.

The outward appearance of normalcy can make it hard for others to appreciate the severity of your illness. This is made worse when doctors don’t address symptoms such as fatigue and pain that make it a struggle to get through the day. Even though Sjögren’s is quite common, most doctors are not trained to recognize even typical systemic symptoms, and tend to focus on dryness. Some medical websites reinforce this incorrect notion that Sjögren’s is mostly about dryness, rather than a serious systemic disease. When presented with this inaccurate portrayal of the disease, family members and patients become understandably confused. Healthcare providers frequently minimize life-changing symptoms or even become dismissive, leaving the patient feeling powerless or invisible. When family members also fail to understand the devastating impact that Sjögren’s can have, the emotional turmoil can be overwhelming.

As a result of widespread misinformation, patients find themselves needing to become “experts” in their disease. Backed with up-to-date knowledge, it is possible to advocate for care and educate health care providers when needed. An excellent, reliable source of information can be found at the Sjögren’s Syndrome Foundation (SSF) website, www.sjogrens.org. Be sure to read or reread the “About Sjögren’s” section, especially the FAQ. Encourage family members to read it too. It’s really good. It might seem overwhelming and a bit disheartening that you need to learn so much about Sjögren’s, especially early after diagnosis. However, educating yourself will provide essential tools for communication with family, friends and doctors.

Communication with family members

Spouses/partners and other family members suffer grief and loss too. It is important to acknowledge this. Open the discussion early. Ask about their fears regarding the impact of your illness and the uncertainly it creates. Be prepared to revisit this conversation several times. Both you and your significant others will go through loss and grief, although the timing and process is different for each individual.

In spite of your best efforts toward clear, empathic communication with your family, some people may respond with judgment and blame. This often comes as a painful surprise, especially at a time when support feels most needed. Relationship upheaval is typical for people with serious illness. It is important not to blame yourself for the illness, but to develop good self-care with an attitude of deep kindness toward yourself. Attempt to keep lines of positive communication open, but set boundaries to protect yourself from negativity.

While unsupportive family members may eventually shift their stance, the approach of trying to educate them repeatedly after several unsuccessful attempts will only result in unnecessary pain. Just having one or two people in your life who truly “get it” can be enough. Recognize that some people may be good at practical support, but unavailable emotionally. The reverse may also occur.

Practical support tips

Practical support, especially from family members, can go a long way in helping you manage your health. Most Sjögren’s patients can participate in a number of activities, especially when family members take over tasks that are particularly challenging for you to do. It takes some trial and error to learn what you can do without compromising your health. Being a good observer of your unique patterns will help you plan the types of activities and pacing that works for you. Even with careful planning, the unpredictable nature of Sjögren’s will sometimes knock you down when you don’t expect it. It is always good to have a backup plan ready- and soup in your freezer!

Many people are happy to help, but might not ask or could assume you are doing ne if you have a partner or other adults in the home. It can be difficult to ask for help, especially if you are the “can do” type of person. It is good to remember that providing support can be beneficial to both givers and recipients. Sometimes support arrives from people you don’t expect to come through, while those you think of as close friends or family may not provide support.

Examples of useful responses and communication tools

  ♦ If you are unsure of a person’s awareness or interest, you can ask: “I’m not sure how much you know about Sjögren’s- do you want to know more about what’s really going on with me?

  ♦ When someone asks if they can help, try to be ready with a specific request such as stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be: “Can I get back to you? I could really use help but I am feeling too overwhelmed to think about it right now.”

  ♦ State your limitations and needs, clearly and without apology. If you are too tired to cook, shop or clean, state that and request specific help from household members. For example: “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.”

  ♦ Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers etc. This may be motivated by a true desire to help, or it can be a way to distance themselves from your experience. Some possible responses: “Thanks for your concern, I am working closely with my doctor on this,” or “I appreciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.”

  ♦ Dealing with insensitive and judgmental comments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments, by asking: “Let me understand. Are you saying (repeat hurtful comment)?” The person may back pedal or give their comment more thought. This does not always work. Here are examples of responses to real life comments:

  ♦ “If you just stopped taking all those medications, you would be fine.”

  ♦ Response: “What I’m hearing you say is you think Sjögren’s is not serious enough to require medication.”

  ♦ “If you would exercise/lose weight/eat paleo etc. you would be fine.”

  ♦ Response: “Do you think if I (fill in the blank) my Sjögren’s will go away?”

  ♦ To a more subtle comment insinuating you are not trying hard enough: “I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjögren’s symptoms.”

  ♦ If responses like this do not work, set boundaries: “It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.”

It can be especially difficult when someone close to you clearly does not understand your illness or support your efforts to take care of yourself. Relationships that were difficult to begin with may become even more painful. Some relationships do not survive the stress of chronic illness. Family members have a limited capacity for emotional or practical support. If you don’t feel supported by those closest to you, being creative about organizing your life, getting support from others, and setting excellent boundaries may be your best strategy. If you are dealing with a close relationship that seems to be faltering, it can be helpful to seek professional support from someone knowledgeable about chronic disease.

Most importantly, know that the news here is not all bad. Many people do step up to the plate, although they may need prompting. Be patient if they are trying to understand; it takes time to adjust and to learn about Sjögren’s. 

by Sarah Schafer, MD and Sjögren’s Patient
Special acknowledgment to Teri Rumpf, PhD and Julia Oleinik, RN for their contributions to this article

This information was first printed in The Moisture Seeker, SSF's member newsletter

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

Topics: Depression, Sjogren's, Treatment, coping with sjogren's, Advocacy

Ask the Expert: How will the recently published SSF Ocular Clinical Practice Guidelines for Sjögren’s affect you

Posted on Fri, Nov 11, 2016

Question_and_Answer-1.jpg"How will the recently published Clinical Practice Guidelines (CPG) for Ocular Management affect my next visit to my eye care professional?"

The recently published SSF Clinical Practice Guidelines for Ocular Management of Sjögren’s were developed to provide evidence-based recommendations for physicians and eye-care providers to advise a logical sequence of treatment options for dry eye. One aspect of the recommendations was to describe methods of grading the severity of dry eye disease and basing therapy on severity and the patient’s response to previous therapy. The guidelines also put into perspective some of the recently developed techniques for diagnosing dry eye and monitoring therapy.

Many of the measures described in the report have been used by practitioners in previous therapy of dry eye, but some of the newer options may not yet have been incorporated into all eye care practices and the described system of grading severity may be new to some practices. Therefore, the effect of the published guidelines may have different implications to different patients.

Your physician or eye care provider may discuss some of the newer options for diagnosis and grading of severity in particular cases. This will probably be true for the testing of tear osmolarity and testing for presence of the inflammation marker MMP-9, as those new tests are of assistance in grading severity of dry eye and recommending treatment options, as well as monitoring the effect of some treatments. Some of the recommendations for such testing may depend upon availability of the in-office tests and whether the symptoms or signs of dry eye have changed in particular patients. The provider may advise additional testing or a change in therapy, but not all patients will require such testing or altered treatment.

The treatment options recommended by a patient’s care provider will depend upon the severity of dry eye disease and the response to previous therapy as well as any existing contraindications to particular treatment options. It also is important to remember that these are recommended guidelines and not mandatory standards of care for all patients with dry eye. The clinical evaluation and overall assessment of each individual patient determines appropriate management as well as the cost/benefit balance for any given patient.

Click here to view the U.S. Clinical Practice Guidelines  for Ocular Management in Sjögren’s  

by Gary N. Foulks, MD
Co-Chair of the Ocular Working Group for the Sjögren’s Syndrome Foundation Clinical Practice Guidelines Committee
 

This information was first printed in The Moisture Seeker, SSF's member newsletter.

Click here to learn more about the SSF Sjögren’s Clinical Practice Guidelines initiative   

Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Ask the Expert, Clinical Practice Guidelines for Ocular Management, Clinical Practice Guidelines

Managing Sjögren’s Vasculitis

Posted on Sun, Oct 30, 2016

Ask the Expert:
“How can I manage my vasculitis so that it doesn’t become too severe?”

Vasculitis usually manifests with purplish skin lesions on the legs and sometimes the trunk. It is usually associated with high levels of gammaglobulin in the serum. The skin may become easily irritated and even break down in areas where numerous lesions develop. The skin around the ankles is most susceptible. Skin break-down and ulcerations may form.

Although severe vasculitis from Sjögren’s may require hydroxychloroquine (Plaquenil), oral corticosteroids and immunosuppressive medications, milder forms can be managed with simple conservative measures.

TMS October 2016.pngSkin breakdown occurs with greater frequency when there is fluid accumulation around the ankles so measures that minimize edema (excess fluid accumulation) in the legs can be helpful. Such measures include elevation of the legs and the use of support hose. When sitting, your legs should be propped up on a chair and not left dangling for too long. Support hose to control edema should be of the above-knee variety. Hose that bunch up below the knee may actually act like a tourniquet and impede blood flow in the legs making edema worse.

Mild trauma to the skin of the legs can also favor skin ulceration so wearing pants may provide an extra layer of protection. Edema can also be controlled with diuretics. Some patients with vasculitis may benefit from low dose aspirin to keep the blood vessels open.

Of course these conservative measures should also be applied in instances when immunosuppressive therapy is needed. Consult with your doctor if diuretic therapy or low dose aspirin is right for you.

by Herbert S. B. Baraf, MD, FACP, MACR

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Plaquenil, Sjogren's, Treatment, Dry Skin, Immunosuppressant, Ask the Expert, Hydroxychloroquine, Vasculitis

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

Back to School, Back to Sjögren’s Basics

Posted on Mon, Sep 12, 2016

BackToSchoolBackToBasics.jpg

This fall, as students around the country begin to head back to school and get ready for a new year, the Sjögren’s Syndrome Foundation (SSF) is using this time to write about “back to basics” in terms of managing your Sjögren’s health. In this blog post, we have focused on the fundamentals that can often be forgotten in the busy day-to-day life.

Your medical team:

As most of you know, rheumatologists have the primary responsibility for managing Sjögren’s and usually are the lead of your “medical team.” That is why, when seeing a new physician or any of your many specialists, it is important to establish clear guidelines regarding your medical management, which means clarifying what things that doctor will be managing versus what your rheumatologists and/or primary care physician will oversee. All of these healthcare providers make up your “medical team.” However, it is crucial that your lead physician has all of the information regarding your diagnoses, treatment plans and prescriptions that your entire medical team is providing. This will help the lead physician better manage your case.

It is important to find a doctor who is both a good partner in treating your disease, as well as a good listener. While we know this can be very difficult, it is needed to make sure you are getting the attention your disease requires.

What medications to ask your doctor about:

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. Currently, a number of different medications are available that might be used to manage symptoms. However, at the present time there is no single medication that has been conclusively proven to slow the progression of Sjögren’s or cure the disease.

Success in using disease-modifying agents to treat closely related disorders like systemic lupus and/or rheumatoid arthritis has led physicians to utilize some of these treatments in Sjögren’s as well. The two most popular choices at present include Plaquenil® (hydroxychloroquine)® (hydroxychloroquine) and intravenous rituximab. The decision to prescribe these specific medications is made on a case-by-case basis after careful consideration of potential risks and benefits.

In addition, many patients also are prescribed corticosteroids as well as prescription products to treat their various symptoms including but not limited to dry eyes, dry mouth, gastrointestinal and joint pain symptoms. As the SSF continues to release Sjögren’s Clinical Practice Guidline Sheets, be sure to ask you physician about the recommend treatment options listed. 

The SSF is dedicated to research into studies that help us better understand the full benefit of these treatments as well as working with companies to help develop new therapeutics that can treat the disease as a whole. The SSF is excited about the current pipeline for treatments that are being investigated by companies, and we continue to be at the forefront at working with and encouraging these companies to move forward.

What to take to a doctor’s appointment:

You should be prepared for a new doctor’s appointment and know your specific objectives for that visit. If this is your first visit to a doctor, it is essential to give them a copy of all your medical records. They will not have time to read it over there during your appointment, but they can keep it on file to review after your first visit.

It is also key to show your physician that you want to be an active participant in your care. Make sure to tell them about all of your daily care. Bringing with you a typed list of medications with dosage (including over-the-counter products and supplements) can be helpful.

In addition, keeping a symptoms journal or diet journal can be beneficial to recognize new or worsening symptoms along with foods that can trigger a are. Click here for the “Tracking Your Sjögren’s Symptoms” worksheet.

And finally, if you have questions for that healthcare provider, bring a list and hand it to them to review. This will help expedite their answers and make sure you get as many answers as possible in one appointment. The healthcare provider can sometimes quickly review a list of questions and tell you which ones are most important to be concerned about and which questions he/she can address at another appointment. Not only will you leave with more answers but your healthcare provider will appreciate your organization.

Find support:

As a Sjögren’s patient, you face the challenge every day of coping with this debilitating disease. Though there are an estimated four million Americans living with Sjögren’s, being diagnosed with an invisible illness can be isolating, which is why it is important to find support and credible information.

Signing up to receive The Moisture Seekers newsletter by becoming a member of the Foundation is your first step! Please share the articles in the newsletter that you find helpful with not only your physician, but family and friends to start a dialog about what you are going through.

Secondly, think about what works best for you in regards to how you can learn and gather information. Patients find different ways to learn how to live with Sjögren’s and here is a listing of just a few:

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Topics: Depression, Sjogren's, Treatment, coping with sjogren's, Immunosuppressant, Rituxan

Tips for Managing Gastrointestinal (GI) Symptoms

Posted on Mon, Aug 22, 2016

The gastrointestinal (GI) tract is an internal mucosal surface, rich in immune system cells/antibodies and nerves, whose main function is to digest food and absorb nutrients for optimal health. Enjoying food and sharing meals is an important part of every society, but for many with Sjögren’s, it is a major challenge.

90% of those with Sjögren’s and Scleroderma have GI complaints. Findings include focal infiltration of predominantly T-helper lymphocytes with or without glandular atrophy and nerve dysfunction.SSSF_Nutrition.dms For persistent GI problems in those with Sjögren’s, a Neurogastroenterology or GI Motility Center may be an option.

Here are some tips for managing GI symptoms in Sjögren’s: 

  • Eat smaller amounts more frequently. Chew as well as possible.
  • Swallowing problems may be related to esophagus muscle inflammation (myositis), dryness, or nerve dysfunction. Soft foods, olive oil, and coconut water might help.
  • GERD is more common and due to decreased Lower Esophageal Sphincter tone (60% vs 20% normal). Avoid reclining after a meal; various anti-acids are available. See tips for reflux in the SSF Patient Education Sheet, “Reflux and Your Throat,” found on the SSF website at www.sjogrens.org.
  • Gastroparesis (delayed gastric emptying) occurs in Sjögren’s (30-70%), and, similar to Diabetes, causes upper abdominal pain/fullness/nausea. Gastric parietal cells can be destroyed leading to B12 deficiency. H pylori bacterial infection, if present, can be treated.
  • Small intestine immune attack (Celiac) or bacterial overgrowth can result in abdominal pain, cramping, bloating. Try a wheat/gluten free diet, or other food group elimination diets. Most nutrients are absorbed here. MALT (mucosal associated lymphoma) can occur.
  • The large intestine is where liquid is reabsorbed. Constipation and diarrhea can occur with Sjögren’s. Increase vegetables. Try magnesium supplement for constipation.
  • The pancreas, which releases digestive enzymes, can have low-level inflammation (20-40%) in Sjögren’s. Pancreatic enzyme trial is an option.
  • Liver – Autoimmune cholangitis (PBC, hallmark mitochondrial Ab) or Hepatitis (smooth muscle Ab) can occur in Sjögren’s. Hepatitis C virus should always be excluded.
The SSF thanks Nancy Carteron, MD, FACR, Clinical Faculty University California San Francisco, with special thanks to Mimi Lin, MD, Center for Neurogastroenterology & Motility, California Pacific Medical Center, San Francisco, California, for authoring these tips from the SSF Patient Education Sheet, GI Tips.

 Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

Topics: Diet, Nutrition, Symptoms, Sjogren's, Treatment, Top 5 Tips, Gastroesophageal Reflux, Gastrointestinal (GI) tract

Clinical Practice Guidelines for Ocular Management in Sjögren’s

Posted on Wed, Jul 20, 2016

July is Dry Eye Awareness Month! During July, the Sjögren’s Syndrome Foundation works to help educate the public about dry eye symptoms, treatment options, and the possible cause being Sjögren’s. We hope you enjoy our July blogs aimed to promote dry eye education and encourage you to share this post.

The Sjögren’s Syndrome Foundation (SSF) has developed the first-ever U.S. Clinical Practice Guidelines for Ocular Management in Sjögren’s to ensure quality and consistency of care for the assessment and management of patients.

The SSF Clinical Practice Guidelines for Ocular Management in Sjögren’s established that, in a given patient, the clinician must determine whether the dry eye is due to inadequate production of tears, excess evaporation, or a combination of both mechanisms. The success of a treatment option depends upon proper recognition and approach to therapy.

Click here to view the SSF Clinical Practice Guidelines for Ocular Management in Sjögren’s and its recommendations.

CPG_Ocular.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 ocular 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 Ocular Management in Sjögren’s   

Topics: Sicca, Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Punctal Plugs, Clinical Practice Guidelines for Ocular Management, Clinical Practice Guidelines

Dry Eye Awareness Month: Serum Tears & Sjögren’s

Posted on Fri, Jul 01, 2016

July is Dry Eye Awareness Month! The Sjögren’s Syndrome Foundation partners with various organizations during July to help educate the public about dry eye symptoms, treatment options, and the possible cause being Sjögren’s. We hope you enjoy our July blogs aimed to promote dry eye awareness and education.   

Q) I have heard a lot about some Sjögren’s patients finding relief from Serum Tears. What are they, how are they made and will it help me with my dry eye?

SSF_Dry_Eye.jpgA) Topical autologous serum used to treat ocular surface damage from dry eye disease is usually reserved for the most severe cases that have not responded to other treatments, particularly intensive lubricant and anti-inflammatory therapy. Autologous describes the fact that it is taken from the patient themselves; serum describes the component of the blood that is used to prepare the drop. It was first reported to improve dry eye symptoms and signs in 1984, but there are now a number of reports supporting its beneficial effect in Sjögren’s disease. Most often prepared as a 20% topical solution, autologous serum must be prepared by removing blood from the patient’s vein and spinning down the clotted cells to isolate the liquid serum which is then diluted in artificial tears solution into small vials. It is not specifically approved by the FDA. Autologous serum contains fibronectin, vitamin A, cytokines, and growth factors, as well as anti-inflammatory substances, such as interleukin receptor antagonists and inhibitors of matrix metalloproteinases. It is not clear which of these components is most helpful, but significant improvement in symptoms, tear break up time, and surface staining have been reported.

The disadvantages of the use of autologous serum include the issue that it must be prepared by the eye care practitioner under well controlled conditions or by a compounding pharmacy, as well as the need to refrigerate the drops. There is a potential risk of infection if contamination of the solution occurs. The stability of frozen autologous serum has been verified for up to 3 months.

Typically, the serum is applied topically four times daily, and this can be done in conjunction with other therapy including topical lubricants, topical cyclosporine, or oral tear stimulants. The serum does not work well with contact lens wear.

This option may not work for every Sjögren’s patient and thus one will need to find an ophthalmologist or optometrist that is familiar with Serum Tears to accurately gauge the benefits.

-Gary Foulks, MD, FACS

This information was first printed in The Moisture Seeker, SSF's patient 
newsletter for members.

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Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Ask the Expert, Serum Tears

Sjögren’s Patient Education Sheets

Posted on Fri, Jun 03, 2016

Patient_Education_Sheets.pngSjögren’s patient education sheets are one way the Foundation continues to provide the most up-to-date information to patients and healthcare professionals.

Patient education sheets are one-page flyers written by healthcare providers on various symptoms of Sjögren’s to help provide a better understanding and coping techniques.

New education sheets are added to the Foundation’s website every quarter. Click here to view all of the SSF patient education sheets. Topics include:

  • Airline Travel Tips 
  • Anti-Inflammatory Diet 
  • Brain Fog 
  • Brittle Nails Tips 
  • Burning Mouth 
  • Chronic Pain Tips 
  • Dental Insurance Appeal Letter 
  • Dental Insurance Reimbursement Tips 
  • Dental Tips 
  • Disability Benefits: Tips on Obtaining Them from the Social Security Administration 
  • Dry Nose and Sinuses  
  • Dry Skin
  • Dry Eye Treatments
  • Dry Mouth Treatments
  • Eating Tips for Dry Mouth Patients
  • Fatigue Fighters
  • Health Insurance Tips – Part 1&2
  • Interstitial Cystitis or Bladder Pain Syndrome 
  • Muscle and Joint Pain
  • Neuro Tips
  • Oral Candidiasis (Thrush) in Sjögren’s
  • Raynaud’s Syndrome
  • Reflux and Your Throat
  • Rheumatoid Arthritis
  • Salivary Glands Massage
  • Sex and Sjögren’s
  • Sleep Tips
  • Surgery, Hospitals and Medications
  • Sun and Sjögren’s
  • Tracking Your Symptoms: Work Sheet

Click here to view the  SSF Patient Education Sheets

Topics: Sjogren's, Treatment, coping with sjogren's

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