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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

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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, Serum Tears, Clinical Practice Guidelines for Ocular Management, Clinical Practice Guidelines

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

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

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.

Click Here to Receive our Newsletter  by Becoming an SSF Member

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 all of the  SSF Patient Education Sheets

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

Ask the Expert: Plaquenil and Sjögren’s

Posted on Mon, May 23, 2016

Question_and_Answer-1.jpgWhat is Plaquenil and what are its benefits for Sjögren’s patients?

Plaquenil (hydroxychloroquine) is a medication that has been used for many years to help musculoskeletal symptoms and fatigue in patients with autoimmune conditions such as rheumatoid arthritis, lupus and Sjögren’s. While there is good clinical evidence demonstrating the drug’s efficacy in rheumatoid arthritis and lupus, there are very few studies looking at hydroxychloroquine as a treatment for Sjögren’s. The studies that do exist show mixed results (some show benefit and some show no benefit) in whether or not the drug is effective in helping with pain, fatigue, dry eyes or dry mouth.

Nonetheless, despite the lack of clinical studies, rheumatologists feel that hydroxychloroquine may have a potential beneficial effect in helping patients with symptoms of fatigue and achiness, which are common complaints in patients with Sjögren’s.

TMS.pngHow the drug works is unclear, but recent research has pointed to an inhibitory effect on toll-like receptors that are proteins involved with inflammation. The good news is that hydroxychloroquine targets the immune system without causing an increase in the risk of infection or cancer that can be seen with other immunosuppressant medications. The typical dose for hydroxychloroquine is 200-400mg per day and is based on a person’s body weight (or if you are overweight, your ideal body weight). While hydroxychloroquine is considered a relatively safe medication, like all medications there are potential risks. These include body rashes that often will itch. The rash typically occurs in the first 6 weeks and is usually mild. In general, the rash will resolve within 2 weeks after stopping the drug. A more severe rash affecting larger areas of the body may occur but is not common. If this type of rash occurs, other medications such as anti-histamines and steroids may be required to help with symptoms.

Over time, hydroxychloroquine may uncommonly have an adverse effect on the retina that can lead to permanent visual damage if not picked up early. In order to protect the eyes, a baseline exam is recommended be- fore starting the drug if you are color blind, have prior retinal problems or have never had a dilated exam (checking color vision is one way the doctor monitors for early damage) or within the first 6-12 months if you have a history of healthy eyes and a recent retinal examination. After the baseline exam, it is recommended that patients get a dilated exam at the minimum of once per year. Retinal problems are more likely to occur after 5 years of use. Newer technologies are available (OCT-optical coherence tomography) that can pick up early changes. If early changes are found on exam, it would be uncommon to have progression of eye toxicity or visual changes.

Other potential side effects include but are not limited to nausea, changes in mood, muscle weakness, skin pigmentation and anemia. While the drug may be used during pregnancy, the potential benefits and risks should be discussed with your doctor.

In summary, if you have Sjögren’s, hydroxychloroquine may be an option to help your symptoms. Because there are other more effective therapies available to treat dry eyes and dry mouth, it is typically prescribed to help musculoskeletal pain and fatigue. Be patient, as the drug may take up to 6 months to see a beneficial effect.

by Scott Zashin, MD Internist & Rheumatologist in Dallas, TX

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Plaquenil, Dry Eyes, Sjogren's, Fatigue, Treatment, coping with sjogren's, Immunosuppressant, Ask the Expert

April is Sjögren’s Awareness Month

Posted on Thu, Mar 17, 2016

April 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 live with its numerous daily manifestations.

AprilisSjogrensAwarenessMonthSjögren's is often referred to as an invisible disease, one that, while patients may experience severe discomfort, people don’t physically see as debilitating. This can be extremely isolating for patients and also leads to the great misunderstanding about the seriousness of the disease.

The SSF wants to help close the gap between the reality of living with Sjögren’s and the perception that many non-patients may have with our This is Sjögren's! April campaign.

To help others visualize and understand what it is like to suffer from Sjögren’s, the Foundation will post a different phrase on social media everyday throughout the month of April that reflects what it’s like to live with the disease.  Each phrase will give a small glimpse into what it’s like to live with Sjögren’s and by the end of April we hope these 30 phrases will show the complexity and seriousness of the disease. 

An example:
“I live in constant uncertainty when planning my day because I don't know if or when fatigue will hit me. This is Sjögren's.” 

You are the voice of Foundation and we want to hear from 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 help others to better understand Sjögren’s! 

What is Sjögren’s?

Sjögren’s (“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, neuropathies and lymphomas. 

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children 

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

Cold Weather & Raynaud’s Phenomenon

Posted on Thu, Mar 03, 2016

Raynaud’s phenomenon describes a condition where the digits of the hands as well as the feet undergo a change in color often accompanied by pain, numbness and/or tingling.

Raynaud’s is often classified as either primary (Raynaud’s disease) or secondary (Raynaud’s phenomenon). Primary Raynaud’s occurs in the absence of any other associated disorder whereas secondary Raynaud’s occurs in the setting of autoimmune connective tissue disorders (CTD), most often systemic lupus erythematosus (SLE) and scleroderma although it can be associated with any CTD including Sjögren’s. Primary Raynaud’s occurs most often in women between the ages of 15-30. There is often a family history of Raynaud’s. Raynaud’s is caused by constriction of small blood vessels in the fingers, toes and occasionally other sites including the tip of the nose and the ears. This is also known as vasospasm.

RaynaudsRaynaud’s most often occurs in discrete episodes triggered most often by exposure to the cold but also by emotion (fear, anger, excitement) and by certain pharmacologic agents including nicotine and certain medications. Raynaud’s is most often reversible; when the inciting stimulus is removed, the episode resolves. Clinicians classically refer to Raynaud’s episodes as “tri-phasic”. This means that the color change proceeds in 3 distinct phases – white, which represents pallor of the digits when blood flow is reduced secondary to the vasospasm; blue/purple, when the blood pools in the veins, and red, where blood flow is temporarily enhanced at the conclusion of the episode. In addition to the association with autoimmune CTD, secondary Raynaud’s can rarely be associated with sludging of blood in capillaries caused by high protein levels seen in hematologic disorders as well as by vascular diseases such as atherosclerosis. Thus, when evaluating a patient presenting with possible Raynaud’s, the clinician needs to distinguish primary from secondary Raynaud’s. This mainly involves determining whether or not the patient has an autoimmune CTD by clinical exam and lab testing. In addition, a simple test where the capillaries of the nail beds of the fingers are examined using a hand held illuminated magnifying lens is often performed. The finding of irregular, dilated nailbed capillaries is strongly suggestive of an underlying CTD.

Since the vast majority of Raynaud’s episodes are triggered by cold exposure, mitigating the effects of reduced temperatures is a very important component of Raynaud’s management. It is important to realize that a significant portion of Raynaud’s pathogenesis is a reflex involving sympathetic nervous system control of blood vessel contraction. Thus, once the cold-induced reflex occurs, the episode will progress. Therefore prevention of this cold-induced reflex is extremely important especially in colder climates or as cold weather approaches. Patients are advised to dress warmly especially regarding the extremities. Mittens are felt to be superior to gloves since they encourage contact warmth between the digits. Gloves/mittens designed for skiers contain chemical or electric heating elements and may be helpful for certain patients. Emphasis should be placed on donning cold-weather gear prior to leaving the home. It is felt that lowering of core body temperature plays a role in triggering Raynaud’s episodes. Therefore, cold-weather clothing should minimize heat loss and include hats, scarves woolen face masks, and the use of layers.

Since Raynaud’s episodes are reversible, return to a warm environment usually results in resolution of the episode. If a digit remains painful or is persistently pale or blue, then immediate medical attention should be sought. When episodes are frequent or prolonged, pharmacologic therapy should be used. Medications used to treat Raynaud’s include those that dilate blood vessels and such as drugs used to treat hypertension (calcium channel blockers, ACE inhibitors and angiotensin receptor blockers). Pulmonary hypertension medications including sildenafil (Viagra; Revatio) can also be helpful.

by Steven E. Carsons, M.D.

Click here to view tips on how to manage your Raynaud's symptoms from the SSF Patient Education Sheet 

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

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