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

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

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

SSF Valentine's Day Giveaway!

Posted on Sun, Feb 14, 2016

 

SSF_Valentines_Day_Giveaway

To celebrate the season of love, the SSF wants to Sjö how much we appreciate you by giving away three complimentary registrations to the 2016 SSF National Patient Conference "The Sjögren’s Journey!" 

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2016. The Foundation will privately email the three winners. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions. 

2016 National Patient Conference
"The Sjögren’s Journey"
April 8-9, 2016

Hilton Seattle Airport & Conference Center 
17620 International Boulevard,
Seattle, Washington
April 8-9, 2016

 
Presentation topics will include:
  • Sjögren's Overview
  • Dry Skin & Dermatological Issues
  • Oral & Ocular Manifestations of Sjögren's
  • Examining Sjögren's - Case by Case
  • Tips for Your Sjögren's Journey
  • Gynecological Issues with Sjögren's
  • An Inside Look at Sjögren's and Gluten-Free Diets
  • Sjögren's - Where are we in Drug Development?

Click Here to View the 2016 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: Sjogren's, National Patient Conference

NIH Hosts Dietary Supplement Database

Posted on Tue, Feb 09, 2016

Did you know that the National Institutes of Health has a database that allows individuals to search the labels of dietary supplements?

SSF_Dietary_SupplementsThe Dietary Supplement Label Database (DSLD) is a joint project of the Office of Dietary Supplements (ODS) and the National Library of Medicine (NLM) of the National Institutes of Health (NIH).

Considering the number of Sjögren’s patients who currently take dietary supplements to aid in the management of the disease, the DSLD could prove to be a very useful tool. An individual can search products, brands and ingredients. This can allow them to review the suggested use of a particular supplement, calories and daily values as well as search other brands and combinations that might be available.

For instance, if a patient is taking fish oil and vitamin D, they could find a combination supplement rather than two separate supplements. This can result in easier maintenance of supplements and cost effectiveness for the patient.

Remember that just because an over-the-counter product is natural, this does not make it safe or appropriate. The SSF recommends that you should always discuss natural remedies with your doctor.

Click here to learn more about Sjögren’s and an Anti-Inflammatory Diet

Click here to learn more about the  NIH Dietary Supplement Database This information was provided by the NIH DSLD web page. 

Topics: Nutrition, Sjogren's, Treatment, coping with sjogren's, Natural Treatments, Anti-Inflammatory Diet

Announcing SSF's 2015/2016 Research Grantees

Posted on Sun, Jan 31, 2016

SSF_Research_2016It is because of your generous support that the SSF is able fund talented researchers and expand the Foundation's research program. We strive to foster research that will have the greatest potential impact on Sjögren's patients, ensuring new therapeutics are developed and a cure is found. 

The SSF research program is designed to reward exceptional research efforts and encourage investigators to continue their focus on Sjögren's throughout their careers. Many of our researchers' work has led to larger grants by other institutes to continue their work and new Sjögren's breakthroughs!  

The Foundation is proud of the work we fund and would like to share with you the five new 2015-2016 SSF Research Grant Recipients and the 2015 SSF Outstanding Abstract Awardee:

Marit Hoeyberg Aure, PhD     
Postdoctoral fellow 
Center for Oral Biology
University of Rochester
Cell lineage analysis in lacrimal gland maintenance and repair
Download Abstract

Alan Nathaniel Baer, MD
Associate Professor of Medicine
Department of Medicine (Rheumatology)
John Hopkins University School of Medicine
Comprehensive analysis of antibodies in Sjögren’s using phage immunoprecipitation sequencing
Download Abstract

Maria C. Edman, PhD
Research Associate
Department of Pharmacology and Pharmaceutical Sciences 
University of Southern California, School of Pharmacy
Tear fluid and serum levels of Cathepsin S and its endogenous inhibitor Cystatin C as biomarkers for Sjögren’s 
Download Abstract

Markus Hardt, PhD
Assistant Member of the Staff
Department of Applied Oral Sciences
The Forsyth Institute
Identification of proteolytic profiles diagnostic of Sjögren’s
Download Abstract 

Petros Papagerakis, DDS, PhD
Assistant Professor of Dentistry
Orthodontics & Pediatric Dentistry
Clinical Significance of Circadian Rhythms Disruption in Sjögren’s Pathogenesis
Download Abstract 


 

The SSF Outstanding Abstract Award is designed for the Foundation to recognize excellence in research by new and/or young investigators who present outstanding abstracts on Sjögren’s research at professional meetings.SSF_Blog_Research_picture-1.jpg

Awardeed at the 2015 American College of Rheumatology Scientific Meeting

Erlin A. Haacke, MD
University Medical Center Groningen (UMCG), The Netherlands

Abstract: Salivary Gland FcRL4+ B-Cells Are a Potential Source of Progenitor Cells for MALT Lymphoma in Primary Sjögren's Syndrome   Download Abstract

Click here to learn more about the SSF Research Program

Topics: Sjogren's, Research

What the SSF Means to Me

Posted on Mon, Dec 28, 2015

 by, Elizabeth Chase 
 
Elizabeth_Chase_2The Sjögren’s Foundation (SSF) has really been an incredible resource for me. I was diagnosed 5 years ago at age 24 and felt very confused. I had heard of Lupus as my best friend has it, but had no clue about any other autoimmune diseases. When I first searched the word Sjögren’s, the foundation came up. I immediately consumed everything they had to offer and became a member. I then found the Boston support group, and started fundraising for them online. 

When I attended my first SSF National Patient Conference in 2013 I met my life line - the Foundation's Under 40 with Sjögren’s Group Support Group. They are my go-to for everyday questions and are a great support system. Thanks to the Foundation, I have been able to share information about Sjögren’s with my doctors and family. Recently, I've participated in an SSF Walkabout, organized my parents retirement parties as Sjögren’s fundraisers and helped kick off the Boston Sip for Sjögren’s event!

I'm very grateful for the support I have found with the Foundation and the information and resources it has provided me with. This is why I support the SSF! 

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member
 
ssf_logoThe SSF was founded by a patient, for patients and the Foundation will never lose that focus. It is because of your generous support that the SSF continues to soar to new heights on our journey to transform a future of hope for all Sjögren’s patients!

So on behalf of the SSF and our volunteer Board of Directors, I want to thank each of you for sharing your story, attending our events, volunteering your time and donating to our programs. Without you, we would not be able to share the amazing successes that we were able to achieve in 2015 and build on this momentum in the New Year. 
 
Wishing you and your family a Healthy and Happy New Year!
 
Sincerely,
Steve_Sig
 Steven Taylor
Chief Executive Officer 
Donate to Research
 
We encourage you to comment below & share what the SSF means to you. 

Topics: Depression, Sjogren's, coping with sjogren's, National Patient Conference

All About Clinical Trials & Sjögren’s

Posted on Mon, Dec 14, 2015

ssfA clinical trial is important because it contributes to the advancement of science. It provides the participants an opportunity to receive potential benefit from a drug, medical device or procedure or even a lifestyle change such as diet or exercise. In a clinical trial, a new medication or product may be compared to one that is currently available. A new medication may be compared to a placebo that has no active ingredients sometimes called a sugar pill. When this new application (medication or product) is studied it may not be known as to whether or not it will help. For that matter whether or not it may be harmful or not make any difference at all.

The investigators that conduct the trials attempt to determine if the medication or product works or is effective. They also attempt to determine if there will be adverse effects associated with the therapeutic intervention. In other words, is it safe for human use? With this knowledge, a determination can be made as to how the use of the product may affect the disease state for which it is being studied.

Clinical trials are designed by investigators who have special interests in particular disease states. The hope is to add medical knowledge relating to the treatment, diagnosis and prevention of diseases.

In general, clinical studies are important because they are designed to add to medical knowledge. Importantly, the results of these trials can make a difference in the care of future patients including possible family members. 

If you are interested in participating in a clinical trial, I recommend that you first talk to your healthcare professional. If their resources are limited, use the Internet and go to www.clinicaltrials.gov to start. There are many websites available. If you are eligible to participate in a clinical trial you may be one of the first to benefit from a new treatment. There are many trials ongoing in multiple disease states. 

Additional sites include:

  • The NIH Clinical Research Trials and You website provides general information on participating in clinical research, with a focus on NIH-funded research.
  • MedlinePlus is a Web-based health information service of the National Library of Medicine. The
  • FDA is responsible for ensuring the safety and effectiveness of drugs, vaccines, and other medical products. Read more about clinical trials and the drug development process on the FDA’s website. 

Good luck!

by Theresa Lawrence Ford, MD CEO & Medical Director of North Georgia Rheumatology Group, PC SSF Clinical Trials Consortium (CTC) Committee Chair

SSF Clinical Trials Consortium

The mission of the SSF Clinical Trials Consortium (CTC) is: To increase the availability and accessibility of therapies for treating Sjögren’s by:

1. Supporting and promoting objectives that facilitate the design of clinical trials through the development of:

  • Biomarkers
  • Novel diagnostics
  • Internationally-accepted classification criteria
  • Internationally-accepted outcome measures

2. Increasing industry partnerships with the SSF

3. Engaging in dialogue with government agencies that oversee therapy approval (FDA, EMA) to develop guidelines for new drug/product approval, speed approval of new therapies for Sjögren's and ultimately ensure corporate interest in drug development

As a member of the SSF, you will receive an email or mailing notifying you about any clinical trials in your area that the Foundation is aware of.

  Click Here to  Become an SSF Member

Topics: Sjogren's, Treatment, Clinical Trials

Ask the Expert: Sjögren’s & Lymphoma

Posted on Fri, Oct 30, 2015

Question_and_Answer "I know as a patient with Sjögren’s I am at a higher risk for Lymphoma, is there anything my dentist could be on the lookout for to help catch it early?"

 This is true; patients with Sjögren’s have an increased risk for developing lymphoma. Most commonly, the lymphoma associated with Sjögren’s is low-grade non-Hodgkin’s B-cell in nature. Visiting a dentist regularly, at least twice a year, is essential, as early detection may affect treatment.

What does lymphoma in the mouth look like?

  • The tumors associated with non-Hodgkin’s lymphoma usually present as non-tender, slow growing masses that may arise in several areas of the body including the neck or the oral cavity. In the mouth, lymphoma presents as a diffuse, non-tender swelling that may be described as boggy. Occurring with higher frequently in the gingiva, posterior (closer to the throat) hard palate and buccal vestibule (the area between the gums, teeth and cheek), these masses are often red or blue-purple in color.

So what does this mean?

As stated earlier, visiting a dentist regularly and routinely is extremely important for early detection. Additionally, when visiting your dentist, make sure to tell him/her of your history of Sjögren’s. It is important that your dentist conducts a thorough and comprehensive head and neck examination, which includes palpating the cervical lymph nodes (lymph nodes in your neck) as well as lifting the tongue and assessing the lateral borders (teeth sides of the tongue), the hard palate, floor of the mouth, buccal vestibules, soft palate, gingiva and the remaining soft tissues in the oral cavity.

Is there anything I can look out for?

Yes. It is important to visit your physician if you notice a swelling in your neck that persists for more than two weeks. You should also visit your dentist if you notice a swelling in your mouth that remains for more than two weeks. As a rule of thumb, if you notice any lesions in your mouth that remain for more than two weeks, it is recommended that you visit your dentist.

by Lauren Levi, DMD, Dental Oncologist 

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

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

Topics: Diagnosing Sjogren's, Dry Mouth, Sjogren's, Treatment, Swelling in the neck, Lymphoma, Sweling in the mouth

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