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Sjögren’s Top 5: What Your Rheumatologist Should be Monitoring For

Posted on Tue, Oct 31, 2017


Daniel Wallace.pngPatients with Sjögren’s usually see their autoimmune treating physician several times a year. Mostly, they are rheumatologists, but can also be primary physicians, internists or subspecialists such as interested pulmonary or hematology doctors. In addition to taking a history, performing a physical examination, or drawing blood tests, are there things that should be specifically looked at or monitored for? This article reviews the top five items.

1. Is there evidence for extraglandular Sjögren’s?

Some people with extraglandular Sjögren’s may have interstitial lung disease, renal tubular acidosis, swollen lymph glands, or inflammatory scarring of the bile ducts (biliary cirrhosis). Being identified with extraglandular Sjögren’s usually warrants systemic immune suppressive therapy with agents such as azathioprine, methotrexate, cyclophosphamide or rituximab. The treating physician should use their tools to screen for the spread of Sjögren’s to new areas with imaging or laboratory testing, which allows one to be proactive and treat the disease early.

2. Screening for lymphoma

Over a 15-20 year period of observation, 8-15% of Sjögren’s patients develop a lymphoma. Screening for symptoms of early lymphoma include asking a patient about swollen glands, fevers, weight loss and new onset of fatigue. A physical examination can detect lymph nodes, evidence for a “wasted” appearance, or an enlarged spleen. I perform a serum protein electrophoresis (a $30 blood test) on my Sjögren’s patients every 6 months. Often, early lymphomas can be detected with the development of an extra protein on this determination, which is known as a “MGUS” or monoclonal gammopathy of uncertain significance. Most Sjögren’s associated lymphomas are of a specific variety known as “MALT” that, if identified early, responds well to treatment.

3. Looking for overlapping Sjögren’s

Sjögren’s patients can have features of other autoimmune conditions such as rheumatoid arthritis, inflammatory myositis, biliary cirrhosis, scleroderma, Hashimoto’s thyroiditis or lupus, while still being “mostly” Sjögren’s. These features may warrant certain anti-inflammatory interventions. This would include corticosteroids for inflamed muscles, drugs that promote more oxygen to dilate the vessels of the hands for individuals with Raynaud’s (often seen with scleroderma or lupus), approaches that halt the development of erosions (bone destruction) with rheumatoid arthritis (e.g., anti-TNFs), ursodiol for biliary cirrhosis, antimalarials for subacute cutaneous lupus rashes in anti-SSA positive patients or thyroid. Identification of a secondary autoimmune overlap can often explain symptoms that may be profound but are not a part of Sjögren’s.

4. Don’t unnecessarily treat Sjögren’s for symptoms that are not related

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Sjögren’s patients may have high blood pressure, depression and diabetes, as does 25% of the United States. Medications given for these conditions can make dry eye or dry mouth symptoms more severe. Treating such patients with anti-inflammatory medications or diuretics (water pills) is not advisable. Before altering one’s Sjögren’s medications or their environment, the physician should strive to rule out co-morbidities or co-existing circumstances that may seemingly worsen Sjögren’s symptoms. 

5. Screening for head and neck emergencies or ares associated with non-extraglandular Sjögren’s

Patients with Sjögren’s whose disease is confined to the salivary glands, eye, head and neck areas occasionally develop complications, which may mandate emergent treatment. These include acute inflammation of the parotid gland (parotitis, or Mikulicz’s syndrome, with either a stone or focus of inflammation, treated with corticosteroids), corneal ulcerations, blocked salivary ducts (affecting the mouth), and dental caries or abscesses. Most Sjögren’s patients see a dentist 2-3 times a year to get their teeth cleaned, and are often frequent return visitors to their otolaryngologist (ENT doctor). 

In summary, screening for the five features reviewed above, can prevent or promote early treatment of the overwhelming complications with Sjögren’s.

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

Click Here to Receive our Newsletter  by Becoming an SSF Member 

Topics: Depression, Treatment, coping with sjogren's, Raynauds, Rituxan, Lupus, Lymphoma, Methotrexate

Headaches and Sjögren’s

Posted on Thu, Aug 31, 2017

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Sjögren’s is a systemic autoimmune disease often characterized by dryness of the eyes and mouth and accompanied by chronic fatigue and musculoskeletal pain. Over half of Sjögren’s patients experience systemic symptoms, some of which can involve the nervous system. One of the most common symptoms involving the nervous system is headache. Headaches are a common complaint in healthy people who do not have an autoimmune disease. Some of the most common types of headaches include tension type headaches, migraines (with and without aura), and cluster headaches. Headaches are common in Sjögren’s, estimated to occur in roughly 50 to 75% of patients.

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Many Sjögren’s patients may wonder whether or not their underlying autoimmune disease is causing the headaches. Although the answer to this question is largely unknown, some research comparing Sjögren’s patients with healthy controls show that tension-type headaches and migraine headaches, the most common headache subtypes found in Sjögren’s, are more common in those with Sjögren’s than in the general population. Other data demonstrate headaches are more severe in those with Sjögren’s than in those of the general population with depression as a significant influence on headache severity.

Sjögren’s patients may also develop a rare and particularly severe type of headache caused by inflammation of the outer lining of the brain (the leptomeninges) called aseptic meningitis. Although meningitis in general is typically caused by infectious agents like viruses and bacteria, in aseptic meningitis, the inflammation is not caused by infection but rather by other causes such as a reaction to a medication or autoimmune activity. In addition to headaches, aseptic meningitis may also be associated with fever, neck stiffness, and other neurologic symptoms such as double vision. 

In general, treatment for routine headaches is the same in those with Sjögren’s as it is for anyone else including medications such as acetaminophen or ibuprofen. Treatment for aseptic meningitis may also involve glucocorticoids such as prednisone. For those Sjögren’s who suffer from headaches, it is important to discuss this symptom with the primary care practitioner and rheumatologist to see if further evaluation is warranted.

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Depression, Symptoms, Sjogren's, Treatment, coping with sjogren's, Headaches

April is Sjögren’s Awareness Month!

Posted on Sat, Apr 01, 2017

SSF This Is Sjogren's.pngApril is Sjögren’s Awareness Month! To portray the entire patient experience, in our This Is Sjögren’s Awareness Campaign, the Sjögren’s Syndrome Foundation (SSF) is drawing facts and figures from our recent “Living with Sjögren’s survey findings. This survey, which was conducted by Harris Poll on behalf of the SSF, gave the Foundation amazing data about how patients’ lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being. 

The independent nationwide survey, designed by Harris Poll along with the SSF and a volunteer committee of patients and healthcare providers, was mailed to Foundation members in the spring of 2016. Nearly 3,000 adults shared their experiences with the disease and its physical, financial and emotional effects on their lives.

With the support of our members, this survey was developed to help the SSF:

  • Educate regulatory agencies and pharmaceutical companies about a need for a therapeutic drug for Sjögren’s
  • Support the need for additional SSF Clinical Practice Guidelines (CPGs) for how to treat and manage Sjögren’s
  • Provide researchers with information about the variety and severity of experiences patients have with Sjögren’s
  • Create greater awareness of this disease among consumers and healthcare professionals

Every day the SSF is sharing a fact from these survey findings or other information about the disease on our social media accounts to show: This is Sjögren’s (#ThisIsSjögrens)! While the daily post give a small glimpse into Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease. SSF_17114.03-4-2.png

How Can You Get Involved:

We encourage you to use April Awareness month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s with your family and friends. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you! We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients. Together, we will transform the future of Sjögren’s!

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Click here to view our daily  April Awareness campaign on Facebook!

 

Topics: coping with sjogren's, Advocacy, Men with Sjogren's,, Children with Sjogren's,, April Awareness Month, #ThisIsSjögrens

Sjögren's Awareness Month is Almost Here!

Posted on Mon, Mar 20, 2017


ATT00002.pngApril is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it.

Sjögren's is often described as an invisible illness because many of the disease’s debilitating symptoms cannot be physically seen. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with Sjögren's. 

This April, the SSF is going to build upon our This Is Sjögren’s campaign from last year! Our goal is to help others visualize the disease from a patient’s perspective, and close the gap between the reality of Sjögren’s and the perception that many non-patients have with Sjögren’s! 

To better portray the entire patient experience, in our #ThisIsSjögrens 2017 April Awareness campaign, the SSF will be drawing facts and figures from our recent national patient survey. This survey, which was conducted last year, has given the SSF amazing data about how our patients lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being!  

Each day, throughout April, the Foundation will post a different #ThisIsSjögrens factoid or patient phrase on social media – so stay tuned! And while the daily post will give a small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease.

Let Your Voice Be Heard!

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As the voice of the SSF, we want to hear form you! Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will transform the future of Sjögren’s.                                             

Example: Sjögren’s means choosing a medication that will help with my fatigue and joint pain but knowing it will make my eyes drier and more painful. #ThisIsSjögrens!

Topics: coping with sjogren's, Advocacy, April Awareness Month

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

Back to School, Back to Sjögren’s Basics

Posted on Mon, Sep 12, 2016

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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:

Click Here to Receive our Newsletter  by Becoming an SSF Member

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

Living with Chronic Illness: Intimacy & Sjögren’s

Posted on Mon, Aug 01, 2016


handholding_SSF.jpgLiving with a chronic illness, like Sjögren’s, can have physical and emotional affects on a woman's sexuality. However, even with the presence of Sjögren’s, women and their partners can enjoy sexual activity and maintain a state of sexual well being. Be open with your partner about your needs and work together for satisfying intimacy.

Below are the three main reasons of how Sjögren’s can affect a woman's sexuality and tips to help.

Vaginal dryness. Women with Sjögren’s often experience severe vaginal dryness.

  • Vaginal moisturizers are available for daily use and lubricants can be used during intercourse.
  • Vaginal estrogen (hormones) may be right for some women.

Pain. Pelvic pain and pain during intercourse, can have many causes, including Sjögren’s, pudendal neuropathy, and interstitial cystitis. 

  • See your health care provider for an evaluation of why you have pelvic pain. There may not be an “easy” answer, but in many cases a possible cause can be identified and treated.
  • Treating vaginal dryness may improve some pelvic pain. 

Fatigue & mood symptoms. Fatigue, chronic pain and depression can contribute to the daily challenge of living with a chronic illness and affect sexual desire and function.

  • Tell your health care provider if you are feeling depressed. Treating depression may help to improve problems with sexual function.
  • Take care of your Sjögren’s and make time for yourself and things you enjoy. 

This information is from the SSF Patient Education Sheet: Sex and Sjögren’s by Anne E. Burke, MD, MPH

 Thank you to our Conquering Sjögren’s blog sponsor SYLK®.

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Click here to learn more about SYLK®, an FDA-cleared moisturizing lubricant.  

Topics: Depression, Sjogren's, Fatigue, coping with sjogren's, Vaginal Dryness, Pelvic pain, Interstitial cystitis

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.

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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

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