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

Valentine's Day Giveaway!

Posted on Wed, Feb 14, 2018

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To celebrate the season of love this Valentine's Day, the SSF wants to Sjö how much we appreciate you by giving away three complimentary registrations to the 2018 SSF National Patient Conference! 

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2018. The Foundation will privately email the three winners on Tuesday, February 20, 2018. 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. 

2018 National Patient Conference 
April 13-14, 2018
Hyatt Regency Aurora- Denver Conference Center
13200 East 14th Place Aurora, Colorado 

Presentation topics will include: 

• Sjögren’s Overview
• Joint Pain and Sjögren’s
• Oral Manifestations of Sjögren’s
• Lymphoma: Risk, Treatment and Prognosis
• Ocular Manifestations of Sjögren’s
• Transforming the Future of Sjögren’s Panel 
• 
And More To Be Announced

Click Here to View the 2018 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: National Patient Conference, Sjögren’s

New Sjögren’s Clinical Trial Locations

Posted on Thu, Jan 18, 2018

Steven_Town_Hall.pngEveryday research is being conducted to unveil new medications, therapies and diagnostic tools for Sjögren’s and its symptoms.  By participating in a clinical trial, you will be helping to potentially uncover breakthroughs that will help Sjögren’s patients worldwide. 

Clinical trials are designed to add to medical knowledge and most importantly, the results of these trials can make a difference in the care and treatment of Sjögren’s patients for generations to come. New clinical trials are investigating possible future treatment options and the SSF is fully committed to the development of new therapeutics that will treat the entire disease, not just one symptom.

These Sjögren’s trials are starting to actively recruit patients and sites open all the time. I encourage you to click on the link below to visit our listing of clinical trial locations and contact the clinical trial study coordinator to learn more.

Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Click here to learn more about  current Sjögren’s clinical trials! 

Topics: Treatment, Clinical Trials, Sjögren’s

The Pros & Cons of using Fluoride for a Sjögren’s patient

Posted on Fri, Jan 05, 2018

“The recent SSF Clinical Practice Guidelines for Caries Prevention mentioned fluoride treatment but I’ve heard it’s a neurotoxin and can have negative health effects. What are the pros and cons of using fluoride as a patient?”

avaWuDDS.jpgThere are nuances to the statement that “fluoride is a neurotoxin,” which should be clarified. The statement should read, “fluoride is possibly a neurotoxin in the developing brain.” This statement is based on statistical studies using children living in non-industrialized areas with drinking water containing naturally occurring very, very, very high levels of fluoride. In fact, the fluoride levels were up to 10 to 16 times that which is allowed in drinking water in the United States. These studies suggested that the lower IQ’s found in these children were the result of neurotoxicity in the developing brain from ingesting high levels of fluoride. The average loss of IQ was approximately 6.75 points with a standard deviation of 15 points. Thus the average loss of IQ was actually within the measurement of error of IQ testing. It was generally acknowledged that each of these studies had deciencies including not mentioning if there were other contaminants in the ingested water (i.e., lead, arsenic, iodine, or other chemicals), which could also affect the developing brain. It is important to remember that most ingested substances can be TOXIC if ingested in excessive quantities over a specified amount of time.

My statistics professor would also stress, “correlation does not imply causation.” Just because drinking water with very high fluoride levels is correlated with a drop in IQ, it does not mean that drinking the heavily fluoridated water actually caused the shift in IQ and thus neurotoxicity. There are many examples, but consider the case of hormone replacement therapy (HRT) being shown to be correlated with a decrease in coronary artery disease (CAD). Further trials showed that HRT actually increased CAD! Reanalysis of the data suggested that it was actually a healthier diet and lifestyle that was reducing the CAD, not HRT. Whether fluoride actually causes neurotoxicity as measured by IQ has not been well defined.

It is important to note that the Sjögren’s Syndrome Foundation (SSF) recommendation for caries prevention suggests the use of a topical fluoride. A topical application of fluoride results in little to no measurable fluoride in the blood. The fluoride is not directly ingested. Consequently, it would not be possible for a topical fluoride, applied as directed, to result in consistently high levels of fluoride within the body to cause toxicity. In addition, the majority of Sjögren’s individuals are considered to have mature brains. That means they are not susceptible to any potentially neurotoxic effects resulting in a loss of IQ points. There are no cons to the use of topical fluoride in an individual who is highly susceptible to caries because of low salivary flow. The pro to the use of topical fluoride is that it can inhibit and even reverse the dental caries process. Fluoride works. And this statement is supported by close to a century of research and scrutiny.

by Ava Wu, DDS School of Dentistry Clinical Professor, University of California San Francis

Click here to view the SSF Clinical Practice Guidelines for Oral Management in 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: Tooth Decay, Clinical Practice Guidelines, Sjögren’s, Floride

Give the Gift of Hope!

Posted on Fri, Dec 29, 2017

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We at the Sjögren's Syndrome Foundation (SSF) are extremely proud of all that was accomplished in this past year and it is because of your generous support that we are able to achieve these accomplishments. Join us and take great pride in knowing that your support plays a vital part in making a difference in the fight against Sjögren's and provides hope to those living with this disease. 

The SSF strives every day to provide hope to patients and their families through our many initiatives. Hope moves us forward and helps transport us to a more promising place. A place where Sjögren’s becomes a household name, where physicians and healthcare providers know about Sjögren’s, and where there are treatments available for this devastating and life-altering disease.

As we approach the end of the year and more importantly, the season of hope, we reflect on what was a dynamic year in Sjögren’s and envision the many advancements and achievements that still lie ahead. We hope you will consider donating today and your tax-deductible year-end gift will help the SSF as we continue our work in the new year. 

Thank you for believing in us and our mission. Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Make a Donation Now

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We encourage you to share this with family and friends so they too can help by having the opportunity to support the SSF. Thank you!

Topics: Advocacy, 50in5: Breakthrough Goal, April Awareness Month, #ThisIsSjögrens

Methotrexate and its benefit for Sjögren’s patients

Posted on Wed, Dec 27, 2017

Question_and_Answer.jpgAsk the doctor: What is Methotrexate and what is its benefit for a Sjögren’s patient?

Methotrexate is an extremely important therapy for Sjögren’s and many other rheumatic and inflammatory diseases. Its predecessor, aminopterin was introduced in 1948 as a cancer treatment. By the early 1950’s small studies of aminopterin in patients with rheumatoid arthritis (RA), psoriasis and psoriatic arthritis demonstrated efficacy but the drug was slow to capture the interest of rheumatologists, perhaps because of the landmark discovery of cortisone, also in 1948, one of the first “miracle drugs.”

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In 1962 methotrexate, a modified version of aminopterin, was introduced. Both inhibited the enzyme folic acid reductase, but methotrexate was easier to produce, making it easier to meet the growing demand for its use in cancer treatment. Small, successful clinical trials of methotrexate for RA, psoriasis and psoriatic arthritis followed its introduction and the case for its use in these disorders slowly built. By the 1970’s methotrexate had become a mainstay in treatment of severe psoriasis and psoriatic arthritis treatment, and then in the 1980’s it was adopted as standard management for RA after large-scale clinical trials demonstrated compelling efficacy and reasonably good safety.

Comprehensive guidelines for treatment of Sjögren’s were recently published in Arthritis Care and Research. Methotrexate is prominently featured in these guidelines for the management of inflammatory musculoskeletal pain in Sjögren’s patients. It should be noted that the arthritis in Sjögren’s may be indistinguishable from that of RA and in some patients the overlap of these two dis- orders is considerable. Patients whose arthritis is poorly controlled with non-steroidal anti-inflammatory drugs (NSAIDs), low doses of steroids and Plaquenil (hydroxychloroquine) are often managed with methotrexate.

Methotrexate is usually taken just once a week in tab- let form. Some patients take it as a weekly injection. The dose is usually steadily increased during the first two or three months of treatment until a maintenance dose is reached. Patients notice a gradual and meaningful reduction of joint swelling, pain and stiffness as the drug takes hold. Improvement may be noticed as early as 6 weeks; the full effect tends to be appreciated at three months. Systemic complaints such as fatigue, weakness and anemia may all improve on treatment.

Side effects of methotrexate are varied. It is a drug that must be monitored closely by a patient’s physician. Common complaints consist of mouth sores, stomach upset, loss of appetite, fatigue or headache. Some patients notice mild hair loss, more of a thinning, usually more noticeable to the patient than to friends or family. Some patients develop a cough or low grade fever. Rarely, a pneumonia-like syndrome can complicate treatment.

Methotrexate can be irritating to the liver. Patients taking methotrexate should avoid drinking alcohol and need to have liver function tests performed by their physician on a regular basis. The bone marrow can be suppressed by methotrexate and blood counts need to be checked regularly as well. Use of the B vitamin folic acid is recommended for all patients taking methotrexate to reduce the risk of side effects.

Patients on methotrexate need to stay in close communication with their physician and should promptly inform their doctor about a cough, fever, mouth sores or loss of appetite.

Despite all of the concerns about side effects from methotrexate, this drug has been quite well tolerated by most patients. Most importantly, methotrexate is a very effective and life-altering therapy for many patients.

by Herbert S. B. Baraf, MD, FACP, MACR Clinical Professor of Medicine, George Washington University

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

Comment below and let us know what questions you would like answered in upcoming issues of The Moisture Seekers.

Topics: Symptoms, Treatment, Methotrexate

Guest Blog: A Mother's Journey "Rise Up"

Posted on Tue, Dec 12, 2017

It’s difficult to describe in words the many emotions or the day to day challenges of being the parent of a child living with a chronic autoimmune disease.  Life for us was forever changed when our daughter was diagnosed with Sjögren’s. Yes, I know.  I had the same reaction.  Say that again?  How is it pronounced?  Can you spell it? And then, the next logical question, can you fix it?  The answer was no.

Tigers.jpgInitially, we felt a sense of relief at least being able to identify the bully that has been picking on our daughter and be able to call it by name – Sjögren’s.  We even walked out of the doctor’s office feeling hopeful the severe episodes that led to the diagnosis were just "one-offs" and moving forward with the prescribed disease-modifying drug would somehow return things to normal.  I suppose some would call this the denial period. We could not have been more wrong.  

Then there is the feeling of isolation.  A strange thing happens as time passes. The silence becomes deafening. I explain to myself that friends and family just don’t know what to say, so they say nothing.  Perhaps they think it causes us pain to talk about it. Or maybe they tire of hearing things just aren’t okay.  I really don’t know. My heart still longs to hear: "We are sorry you are going through this." "You are doing a good job." "You are doing your best." "This must be hard." Anything kind…anything at all. No matter how much time has passed, some spoken acknowledgment would rescue me from the deserted island we sometimes feel we are on. 

And while all of those feelings still ebb and flow and toss and tumble us, an inner strength has emerged, rooted in the deep love and respect we have for our child. It’s how we put on a reassuring face, whisper encouraging words, admire our little girl’s strength and determination and push for answers. 

We started doing research. We tried to "hack" what may have caused this and why our child?  And still there are no answers and no solace in the research.  Gradually, we realized that there is a new normal.  And what was, will no longer be.  We mourned.  We mourned the loss of what was a carefree and energetic child.  We mourned our helplessness and the powerlessness we felt that we don’t have the answers and we can’t fix what is wrong.  We wish and wish that we could take our child’s place.  She has her whole life ahead of her.  Why can’t we take her place? I’d gladly take my daughter’s pain so that she could return to a "normal" childhood, one that wasn’t filled with medications, doctor’s appointments, waiting rooms, labs, chronic pain, fatigue, disappointments and fear. I don’t think we will ever reach the acceptance stage.

Where are we now? Sjögren’s is a complex disease that significantly impacts our lives. She experiences nerve pain for months on end that would render many adults unable to function, yet she perseveres and pushes on while we continue to partner with physicians to ease it.  Our ‘normal’ now consists of a morning routine to help our daughter get of out of bed each morning.  We deploy heating pads, massage and medication to help her painful joints regain something approaching normal motion.  We talk about what she can and cannot do that day so that she can manage her pain or her crippling fatigue.  Sometimes it’s a school day. Sometimes it’s not – often times, it’s not. Already, four months into the school year, she has missed a month of school for illnesses or doctor’s appointments. Remarkably, she is still an excellent student and has not fallen behind. 

We encounter top physicians who admit they are just now learning about Sjögren’s and confide that the treatments they are recommending have no science or research behind them.  We, as parents, are forced to make decisions about medications with serious sides effects for which there are no long term studies. We weigh everything and ultimately decide that we would do anything to make her more comfortable, enjoy her day-to-day and do as much of what all the other kids are doing without hesitation. We try to remain optimistic that the medications are helping and slowing the progression of the disease and its numerous more serious complications. Essentially, we are guessing and performing trial and error to figure out what will work.

Funny how your expectations can shift.  We now wish for her to be happy above having good health. I continually voice my commitment to my daughter. I won’t stop advocating and I won’t stop searching for a treatment that works or for a cure. That’s why you see me on social media being as persistent as I am. I owe this to her. If I don’t fight for our little warrior, who will?

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This was originally posted on, Sharon Tiger Talks, where Sharon raised over $3,000 for the SSF on #GivingTuesday.Body .jpg 

Topics: Children with Sjogren's, #ThisIsSjögrens

Sjögren’s & Kidney Disease

Posted on Wed, Nov 29, 2017

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

SSF TMS.pngAbout 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

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

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

 

Topics: Symptoms, Treatment, Immunosuppressant, #ThisIsSjögrens, Kidney Disease, Urine, Sjögren’s

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

RESEARCH UPDATE: New Breakthrough from SSF Grantees

Posted on Thu, Sep 07, 2017

 "Findings yield new clues to puzzling autoimmune disease"

OMRF.jpgOklahoma Medical Research Foundation (OMRF) scientist and former SSF research grant recipient, Kathy Sivils, Ph.D., and her colleagues have identified a strong association between a variant in a gene called OAS1 and susceptibility to Sjögren’s. This variant may provide valuable insight into the genetic basis of Sjögren’s, as well as other autoimmune conditions with similar triggers.

This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researchers led by scientists at OMRF, including two former SSF Research Grantees: Dr. Kathy Sivils and Dr. Christopher Lessard.

“There was very little evidence for a connection to autoimmune disease prior to our study. Firmly establishing this new association with Sjögren’s then led us to look at the gene’s function in more detail,” said OMRF scientist, co-leader of the project and former SSF research grant recipient, Christopher Lessard, Ph.D.

“If we can get out ahead of the disease, it might help lessen the severe damage that can occur in salivary glands and other organs,” Dr. Sivils said. “Early diagnosis and proper treatment are crucial, and discoveries like this one may give researchers and healthcare professionals more to work with as they look for clues to this perplexing disease.”

Although this is only one step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions, and treatments at the disease’s genetic level.

“On behalf of Sjögren’s patients, the Sjögren’s Syndrome Foundation (SSF) applauds OMRF for its commitment to finding the many unanswered questions about the disease,” said SSF CEO Steven Taylor. “Drs. Sivils and Lessard, along with their OMRF colleagues, continue to leave their mark in advancing Sjögren’s research, and patients worldwide will benefit from their hard work.”

It’s because of your generous support that the SSF is able to award grants to talented investigators, like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research. The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice GuidelinesClinical Trials Consortium and our 5-Year Breakthrough GoalWe hope you will consider donating to the SSF Research Program and help us transform the future of Sjögren’s for all patients and their families. 

Click here to read the full press release from OMRF

Donate to Research

Topics: Sjogren's, Advocacy, Research

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

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