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

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.

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

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

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

Meet the Sjögren's Syndrome Foundation!

Posted on Tue, Jun 21, 2016

SSF_2015.jpgWho is the Sjögren’s Syndrome Foundation?

The Sjögren's Syndrome Foundation (SSF) is proud to be the only national non-profit organization focused on increasing research, education and awareness for Sjögren's. Founded in 1983 by Elaine Harris, a frustrated patient, the SSF’s mission was simple: help patients cope with their Sjögren's, increase awareness, and support research efforts. 

Today, under the leadership of Steven Taylor, SSF CEO, our mission has remained the same while we have grown into a multi-faceted organization that has expanded its outreach, increased its funding for research, education, and awareness of this debilitating disease. In addition, the Foundation is an internationally recognized organization shaping the industry in terms of research, education, patient care, advocacy and new therapies. 

As the SSF continues to expand, our commitment to patients will never change; they are the reason we were founded and the reason we continue to operate today. 

Elaine_Harris.png Elaine Harris, SSF Founder, at the 2016 New York City Sip for Sjögren’s Event

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, an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities.

Men_with_SS.jpg   This_is_Sjogrens.-1.jpg

Click here to learn more about the  Sjögren’s Syndrome Foundation

Topics: Sjogren's, Advocacy, Men with Sjogren's,

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 yers 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. 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

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

This is Sjögren’s!

Posted on Fri, Apr 01, 2016

AprilisSjogrensAwarenessMonthToday begins Sjögren’s Awareness Month and for the next 30 days we will use your words to help raise awareness of this debilitating and complex disease.

You are the voice of the Sjögren’s Syndrome Foundation, which is why last month we asked you to share with us one phrase that represents what it is like to live with Sjögren’s. Everyday in April we will post a different one of your phrases on social media that reflects living with this invisible disease.

Each phrase will give a small glimpse into the life of Sjögren’s patients and by the end of April, we hope these 30 phrases will help others better visualize and understand the disease. 

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Remember that by talking with one person at a time, one community at a time, one physician at a time and one company at a time – together we will reach our goal and conquer Sjögren’s!  

This is Sjögren’s!

#Day1: I look healthy on the outside, however my disease is attacking my internal organs and destroying me from the inside out. #ThisIsSjögrens #SjögrensAwarenessMonth #TheSjögrensJourney

This_is_Sjogrens.-1

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

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: Symptoms, Sjogren's, Advocacy, April Awareness Month

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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