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

The Sun & Sjögren’s: How to protect yourself

Posted on Tue, Jun 30, 2015

Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin.

In response to the sun, Sjögren’s patients can experience skin rashesocular sensitivity, pain, and disease flares. Sun sensitivity with Sjögren’s is associated with the autoantibody SSA/or Ro. Below are a few tips to help protect yourself this summer and year-round. 

  • Protect your skin and eyes through use of sunscreen, UV-protective lenses/sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting. Sun-protective clothing is designed to protect your skin from UVA & UVB rays and is more reliable than sunscreen.
  • SSF_Sun_and_Sjogrens_TipsConsider purchasing UV-protective car and home window tinting and films (which come in clear.)
  • Wear sunscreen on areas not covered by sun-protective clothing, such as the neck and ears.
  • Read sunscreen labels and look for the words “broad spectrum,” which protects from both UVA & UVB light. Note that the SPF ratings refer only to UVB rays. 
  • Use plenty of sunscreen with a higher number SPF. Most people only use about 1/3 the recommended amount of sunscreen. This reduces the benefit of the SPF rating.
  • Remember to reapply sunscreen because water, humidity and sweating decrease sunscreen effectiveness.
  • Investigate whether UV-protective clothing and eyewear, window shields, and sunscreens are eligible for reimbursement under your insurance plan or Flexible Health Care Spending Account. 

The SSF would like to thank Mona Z. Mofid, MD, FAAD, for authoring this information that was first published in The Moisture Seekers, SSF's member newsletter, and as an SSF Patient Education Sheet

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Topics: sun and sjogren's, Symptoms, Sjogren's, Dry Skin, Top 5 Tips, Makeup Tips, Chronic Pain, Flare,, Ocular Pain, Skin Rashes

Top 5 Tips for Dry Skin

Posted on Thu, Jun 18, 2015

Dry skin often is overlooked as a major feature of Sjögren’s but deserves greater recognition as a frequent issue for patients. Dry skin can occur as the result of an immune dysfunction and destruction of the structures, which moisturizes and lubricates the skin – a process similar to that which causes dry mouth and dry eye in Sjögren’s

dry_skin1-1These skin structures include the hair and oil glands as well as sweat glands. Once destroyed, these oil and sweat glands cannot be restored. Although most common in fall, winter and early spring, dry skin occurs throughout the year. Areas most often affected are legs, arms and abdomen (especially the beltline/waist).

Your dermatologist can be your best resource and may be able to give you samples of products to try. Here are some basic dry skin survival tips that may help: 

  1. Use gloves when you are using strong soaps or chemicals to clean. One way to get in the habit is to keep a pair of gloves in several areas (i.e. kitchen, bathroom, garage).
  2. Terry robes will dry you gently. Or after the shower, let yourself dry naturally to let the water’s moisture be absorbed by your skin.
  3. Use warm, not hot, water for bathing and use soap sparingly (shampoo might also be drying to the rest of your body in the shower).
  4. After bathing, apply lotion as soon as possible to seal in moisture.
  5. Use a humidifier, especially if you have forced-heat, which is especially drying (For Sjögren’s patients, an optimal range of humidity is between 55% and 60% regardless of the ambient temperature). 

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Topics: Sjogren's, Treatment, Dry Skin, Top 5 Tips, Makeup Tips, coping with sjogren's

Ask the Doctor: What's an Immunosuppressant?

Posted on Sat, May 30, 2015

Q. I keep reading about immunosuppressants as a therapy for Sjögren’s. What is an immunosuppressant?

A. There isn’t a universally accepted definition of an immunosuppressant medication. In general, I think most providers would agree that a medication that has been shown to potentially increase the risk for infections in long- term studies would be considered an immunosuppressant. It is important to note that many, if not most, patients with Sjögren’s do not need or benefit from immunosuppression.

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For certain patients, however, they can be very helpful. The most common immunosuppressant medications used for Sjögren’s include methotrexate, azathioprine (Imuran), mycophenolate (Cellcept), cyclophosphomide (Cytoxan), and biologic agents, such as rituximab (Rituxan). These are also used for many other related autoimmune diseases, and the effect of each medication on the immune system varies from blocking inflammation pathways to directly affecting white blood cells.

There is a common goal for all immunosuppressants: to put the disease into remission, or at the very least reduce the severity or frequency of symptoms and allow patients to avoid steroids. As with all medical treatments, the hope is that the benefits outweigh the risks. If not, then the dose is typically decreased or the medication is stopped completely. With the exception of certain cases, immunosuppressives are generally used to help provide symptomatic relief and not necessarily to prevent something bad from happening. So if an immunosuppressive is tried but doesn’t help after an adequate amount of time, it is usually stopped.

Hydroxychloroquine (Plaquenil®), a medication often taken by Sjögren’s patients, is not generally considered an “immunosuppressant.” While it does change or “modulate” the immune system in various ways, it does not lead to an increased risk of infections and does not require lab monitoring.

by Joseph Lutt, MD

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

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Topics: Plaquenil, Symptoms, Sjogren's, Treatment, Imuran, Immunosuppressant, Rituxan, Cytoxan, Cellcept

10 Lessons From A Great Teacher

Posted on Fri, May 15, 2015

by Alida Brill 

Most of us have memories of a teacher who influenced our lives. I certainly do.  But my greatest teacher has been chronic inflammatory autoimmune disease. Obviously, I use the word great here not as in “wonderful” but as in “of extraordinary importance and weight.”

Support_SSFA few years ago a young woman approached me after a talk I gave about living with chronic disease for my entire life (well, from twelve forward, so close enough). She wanted to know precisely what I meant when I said: At the end of it all, it really hasn’t been all bad.

Understandably, she wanted to know what wasn’t all bad about always being unwell.  She had been recently diagnosed with Lupus and saw the life she had known and valued disappearing. She was overwhelmed by the unknown and confused by conflicting medical opinions about treatment options. I said a few things, likely not useful, but her question stuck with me.  Precisely what do I mean when I say that?

During virtually all of last year I was sidelined from doing almost anything as I went from one autoimmune crisis to the next.  The only thing I could do consistently was to let my mind spin out of control, which often took me to destructive destinations.  That young woman kept appearing in my daydreams.  If I were to offer anything useful to others who live on this planet of chronic illness, I had better come up with something to back up the platitude. At first I thought the deeper meaning was that I pay more attention to the things that count in life, and less to those that don’t.  But many of us do that, whether we’re ill or not.  I spent some time thinking about how to fashion a life of illness into a life of lessons.  Here is how illness itself became a great teacher to me, and the ten lessons I took from it. 

1. How to Hold Your Tongue

People often say ridiculous things, especially to the sick.  I’ve heard my share, and I’ll bet most of you have as well. Sometimes it’s hurtful -- sometimes strangely amusing.  I’ve learned not to take up every verbal challenge, not to inform others how wrong they are.   There are those who are filled with bewildering misinformation but persistently engage in arrogant advice giving. I have dropped acquaintances or friends who could not find their way to compassion or understanding. Most of the time, I decide a solid friendship is worth preserving. I can usually separate thoughtlessness from cruelty. I also learned that the childhood rhyme: sticks and stones can break my bones, my words will never hurt me is a lie. Words can wound. Chronic disease has taught me to hold my tongue, still I use this phrase frequently (without hostility): Ouch! What you just said really hurt.

2. How to Be With Yourself

… And not by yourself.   When we women walk into most restaurants on our own (other than diners or fast food chains) we’re usually asked: “Will you be dining alone tonight?” Or, the even more grating: “Only one tonight?” I often dine solo for many reasons, but I’m not alone: I’m with myself.  It is crucial for those of us with chronic disease to cultivate strong friendships – with ourselves. To be with yourself in your own company is essential to a feeling of independence and empowerment. There are times when a flare doesn’t make me that great a companion – except to myself!  Loneliness is not healthy, but solitude can refuel your soul.

3. How to Need Without Becoming Needy

I’ve been unwell for so long I could write an entire book about how people have left me.  Chronic illness wears friends down, repels spouses and lovers, exhausts friendships and fragments intimacy.  But this doesn’t mean we’re not entitled to ask for help.  Be brave enough to say you need some assistance and strong enough to accept it if the person can’t or won’t come up with it. You are not a failure. You are not pathetic. There are people who can and will assist us.  Keep your needs in perspective and in balance.

4. How to Forgive

First, forgive yourself. With chronic disease, we are not always reliable.  We make plans and then cancel.  We try to do a good job at work, as a parent, as a spouse, but it doesn’t always stack up to an A+. Don’t berate yourself.  We’ve done the best we could and we can keep trying to improve. Keep in mind that days ahead may not be as awful as the ones where we couldn’t go through with a project or a commitment. 

Second, forgive others who let us down. Promises are words of good intentions.  Sometimes they are not fulfilled, but everyone deserves a second, third, and perhaps even a fourth chance.  Remember that even the well and able-bodied can become overwhelmed.

5. How to Listen

Illness has taught me to listen carefully to physicians as they are speaking rather than anticipating what they are going to say next. A wise doctor told me: All facts are friendly. He didn’t mean that all medical facts were pleasant or joyful, but that information is power.  You can’t make a decision about what to do, or not do, or what to ask of another doctor if you’ve not bothered to take in what has been already given to you. There are times when we want to interrupt doctors; we have so many questions and they have such limited time.  But letting doctors have their say too is the best first step to establishing patient-doctor dialogue.  Don’t make assumptions until you’ve had time to digest and consider.

6. How to Challenge Authority

Doctors have high status in our culture.  Even if you’re a person with a distinguished title or career, the power of doctors trumps most of us.  Sometimes a doctor is wrong about what’s best for you, or what you can manage at a particular time. There’s a way to challenge a medical authority without blowing up the relationship.  This is best done after you’ve had some time to formulate questions and your concerns.  Doctor-patient relationships are similar to all other important ones and anger and accusation virtually never take us to a healthy place.

7. How to Try Again           

… And again.  I’m not sure there’s a better teacher of resilience than chronic disease.  I have often wanted to give up, to spend my time whining, to shift my gear into the “stall and wallow mode”.  But I haven’t because life is out there asking us to challenge it -- and our diseases -- urging us to get up and get going to progress in our own fashion. Face the reality of your disease but just as strongly acknowledge you are still equipped to keep attempting the all but impossible.  In the words of Samuel Beckett: Try Again. Fail Again.  Fail Better. 

8. How to Hope

Well or unwell, if we don’t have hope we’re doomed.  Discouragement and chronic disease are best friends to each other. I’ve become almost euphoric at the prospect of a new drug or a respite from flares, and then fallen quickly into a ditch of despair when the drug doesn’t work or when it makes me sicker, or when the containment of disease is short.  For those who have spiritual faith, the job might be easier, because faith is said to fuel hope.  But you don’t have to profess a particular religious belief in order to hope. Hope means the belief in a better moment, a better cycle, a better result. 

Hope is the glue of survival.

9. How to Endure Loss

I have endured loss by embracing it.  It’s not for everyone, but I think it’s worth a try.  Face the reality of what’s gone and can’t be retrieved – a relationship, a job or career, financial security, an independent lifestyle – for many of us it’s a long list.  Remember all that was given to you when you had these things or persons in your life. Find a place within your awareness where they can still reside, undisturbed.  But at the same time do not long for a return of what can’t be reclaimed.  Find new things to claim and new ways to enrich your life.  When my mother was very old (over 90) she could no longer walk in her garden, but she could see it from her window and would recall the days when she worked in it. Undoubtedly she missed those days, but kept her garden by finding a new way of being with it.

10. How to Embrace the Unknowable Future

Here we’re not different from anyone else.  Nobody can predict the future. As an unwell woman, I’ve been particularly anxious about my future.  Where will my disease choose to go next?  What will be my further limitations?  What if the drugs don’t work at all?  What if I run out of resources? And on and on and on.  But we’re all in this lifeboat together. Particularly as we get older the worries increase about how to navigate illness.  If we’ve been sick from childhood, we feel prematurely old.  It’s good to step back and take in the moment of living as it is, and to understand that we can only find our way to the next moment in our life and then the next, and the next. We can’t figure it all out at once.

Would I choose this life again? No. I think about the many who suffer, and I hope there will soon be cures and real remedies for us all.  Autoimmune disease, in all its manifestations, is an area of medicine for which I want more attention, more research dollars, more independent drug trials, and more splendid young doctors (especially women).                                                                                                            ©2014 Alida Brill

 This article was first published in The Moisture Seekers, SSF's member newsletter.

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Alida Brill is a writer in New York City.  She has atypical Granulomatosis with Polyangiitis (formerly known as Wegener’s). Her last book, Dancing At the River’s Edge:  A Patient and her Doctor Negotiate Life With Chronic Illness, (Schaffner Press) is a dual-memoir written with her long-time doctor, Michael Lockshin, M.D. She is an activist and advocate for girls and women with autoimmune disease. She is currently at work on a new book, Dear Princess Grace, Dear Betty: The Memoir of a Romantic Feminist, scheduled for publication by Schaffner Press in Winter 2016. 

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

30 Words for Sjogren’s Awareness

Posted on Thu, Mar 26, 2015

AprilisSjogrensAwarenessMonthApril is Sjögren’s Awareness Month

The Sjögren’s Syndrome Foundation works to educate the public about this complicated and debilitating disease, and how it affects those who live with its daily manifestations. This April, we will use 30 words to help raise awareness of Sjögren’s.

Everyday in April we will post a word of the day that reflects about what is Sjögren’s, to help increase awareness and education of this invisible illness.

You are the voice of Foundation and if you are living with this disease or know someone who is, what is one word that represents “Sjögren’s” to you? Please share your word by commenting below. Thank you for your support and together we will make Sjögren’s a household name!

What is Sjögren’s?
As many as four million Americans are living with Sjögren’s, a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Although the hallmark symptoms of Sjögren’s are dry eyes, dry mouth, fatigue & joint pain, it is a systemic disease and affects the entire body.

Topics: Sjogren's, Sjögren’s Awareness Month,

What is a Sjogren's Flare?

Posted on Thu, Mar 12, 2015

What is it? How is it treated? Can you avoid it? 

Medical dictionaries define “flare” as a sudden exacerbation of a disease. A flare is different from the day-to- day variation of symptoms that patients with chronic diseases experience and is characterized as a large and rapid increase in a patient’s usual symptoms. I like to define a flare as a sudden and significant increase in the activity of a disease. This definition allows us to use quantitative measures of disease activity to compare levels of disease activity from one point in time (e.g. baseline) to another (e.g. flare). 

2015_SSF_Body_ImageSeveral measures of disease activity have been developed for Sjögren’s. The two most promising are the European League Against Rheumatism Sjögren’s Syndrome Disease Activity Index (ESSDAI) and the European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index (ESSPRI). The first is a tool that measures disease activity from the physician’s perspective in the many organs and systems affected by Sjögren’s.

The second measures disease activity from the patient’s perspective and includes a patient’s global assessment of disease and individual measures of dryness, pain, and fatigue. These surveys have been developed to consistently evaluate disease activity in research settings such as clinical trials. Nevertheless, they could be used in clinical practice as guidelines for evaluating disease activity in the office or clinic. The ESSPRI is a simple tool that could be used in the clinic, much like the use of the Health Assessment Questionnaire (HAQ) in patients with rheumatoid arthritis and other rheumatic diseases.

When patients say they are experiencing a flare, they usually mean that they are experiencing a marked increase in their Sjögren’s symptoms such as dryness of their eyes and/ or mouth, joint and muscle pain, and fatigue. Other symptoms might include swollen glands, skin rashes, or numbness and weakness in extremities. Physicians must make sure that these symptoms and signs are in fact a flare of the Sjögren’s and are not caused by other conditions that are not associated with Sjögren’s. These include infection, anemia, thyroid disease, drug side effects and fibromyalgia syndrome, to mention a few. 

Since there is no specific treatment for Sjögren’s at present, treatment is symptomatic and dependent upon which organ system is involved. There are several things you can do to lessen the likelihood of getting a flare. Keep taking the medications prescribed for you on a regular, daily basis. Eat a healthy diet, exercise regularly and get restorative sleep. Try to minimize physical and emotional stress and develop good coping mechanisms when stress is unavoidable. Hydroxychloroquine has been shown to lower disease activity in systemic lupus erythematosus and may be similarly helpful in Sjögren’s. Your physician also might recommend other medications to improve your symptoms.

-Neil I. Stahl, MD, FACR

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diet, Sjogren's, Joint Pain, Fatigue, Treatment, coping with sjogren's, Flare,

Top 10 Tips for Burning Mouth from Oral Candidiasis (Thrush)

Posted on Tue, Jan 20, 2015

SSF_Color_LogoOral candidiasis, or thrush, is a common problem in dry mouth patients.

Thrush can cause oral burning and pain. The appearance of thrush in a dry mouth patient is often atypical and appears as red and irritated instead of the typical white cottage-cheesy. The tongue may show grooves, and the corners of the lips appear red and crusty (called angular cheilitis).

Here are 10 tips that can help manage & treat oral thrush:

  1. Practice excellent oral hygiene and change your toothbrush frequently when oral candidiasis is active.

  2. Talk to your dentist or rheumatologist about taking Evoxac® (cevimilene) or Salagen® (pilocarpine) to increase salivary flow.

  3. Don’t use mouthwashes containing alcohol.

  4. Limit sugar and foods that contain yeast, such as wine, beer and bread. And increase your intake of acidophilus through unsweetened yogurts with live lactobacillus acidophilus or capsules.

  5. Avoid caffeine and alcohol, both of which can increase dryness.

  6. Sip water frequently and rinse after eating or drinking if you can’t brush.

  7. If you smoke, STOP!

  8. Clean dental prostheses every day with an anti-fungal preparation and avoid wearing them at night.

  9. Talk to your dentist about prescription therapies available to help with oral candidiasis. Sometimes a combination of treatments is necessary if the problem is severe.

  10. For maintenance once thrush is under control, discuss with your dentist frequent use of a magic mouthwash with diphenhydramine, nystatin and Maalox. A chlorhexidine gluconate rinse can also be helpful (and if you wear dentures, it’s good for cleaning those too).
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Check the Sjögren's Syndrome Foundation's Product Directory (free of charge to all SSF members) to see the many products available for dry mouth.

This information was taken from the SSF Patient Education Sheet: Oral Candidiasis (Thrush) authored by Nelson L. Rhodus, DMD, MPH, FICD. Dr. Rhodus is Professor and Director, Division of Oral Medicine, School of Dentistry Adjunct Professor, Department of Otolaryngology, School of Medicine, University of Minnesota, Minneapolis, Minnesota. Click Here to view the full SSF Patient Education Sheet: Oral Candidiasis (Thrush)

Topics: Dry Mouth, Symptoms, Sjogren's, Treatment, Thrush, Burning mouth, Oral Candidiasis (Thrush)

5 Tips for Dry and Brittle Nails

Posted on Thu, Jan 08, 2015

Sjögren's is a systemic disease, affecting the entire body. While the disease's four hallmark symptoms are dry mouth, dry eyes, fatigue and joint pain, symptoms vary from person to person.

Although no clear association between Sjögren’s and nail disorders has been reported, Sjögren's patients frequently complain of this problem. Many different dermatologic conditions including some autoimmune disorders, infections, dryness and certain medications can affect nails.

Brittle nails are characterized by hardness, peeling, crumbling, fissures, excess longitudinal ridges or lack of flexibility of the finger and toe nails. This sometimes causes pain and interferes with normal daily activities.

Here are some tips to help:

  1. Keep the nails short. This prevents the nails from catching on things or acting as a lever and causing further damage.
  2. Protect the nails when performing wet work (like washing dishes) by using rubber gloves and cotton glove liners.
  3. Avoid excess contact with water or chemicals (including nail polish remover) which can cause dryness.
  4. Use moisturizer on your nails multiple times per day and reapply the moisturizer after your hands come in contact with water. You can use the same moisturizer used for your dry skin.
  5. Steer clear of cosmetic products such as artificial nails and nail wraps which can cause damage.

Talk to your Dermatologist:

Nails pic 2  * If your dermatologist approves, try a course of biotin for your have brittle nails.
 
  * If you're diagnosed with a fungal infection of your nails, your dermatologist can discuss a variety of treatment options which are available.

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The SSF thanks Adam I. Rubin, MD for authoring these tips. Dr. Rubin is Director of the Nail Practice & Assistant Professor of Dermatology, Perleman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.

Topics: Symptoms, Sjogren's, Treatment, Dry Skin, Top 5 Tips, Dry Nails, Makeup Tips

Looking to the Future: Sjögren's & the SSF in 2015

Posted on Mon, Dec 29, 2014

describe the imageDear Friend,

Thank you for your continued support of the Sjögren's Syndrome Foundation (SSF) and our work to better the lives of those who suffer from Sjögren’s. 

We are excited about the progress we continue to make and the recent advancements in Sjögren's research and awareness speaks to the continuous efforts of the SSF, our Board of Directors, Medical and Scientific Advisors, Awareness Ambassadors and the hundreds of volunteers throughout the country. But the greatest impact is being made by YOU! It is your support that has made our achievements over the past year possible. We are truly grateful for your part in our growth and success.

The SSF continues to work hard to impact the lives of those with Sjögren's and in the upcoming year, the SSF plans to: 

  • Encourage pharmaceutical companies to develop new therapeutics for Sjögren’s
  • Assist in getting new Sjögren’s drugs to market by working with the FDA
  • Encourage, support and fund innovative Sjögren’s research
  • Continue our work on the SSF Clinical Patient Guidelines for Sjögren’s 
  • Support the development and use of new diagnostics for Sjögren’s
  • Expand our focus in educating all healthcare providers about the severity of Sjögren’s and its numerous manifestations
  • Further support patients, family and caregivers

Each year, we continue to fight to maintain our hard-won achievements and will make even greater strides forward in the upcoming year. I hope you will renew your support with a year-end gift to the SSF, and give what you can to support our efforts to create a better future for all patients living with this debilitating disease.

Wishing you and your family a wonderful holiday season!

Donate to Research

Sincerely,

describe the image
Steven Taylor,
SSF Chief Executive Officer

 

Topics: Sjogren's, Research, 50in5: Breakthrough Goal

Ask the SSF Staff: Treating Primary vs. Secondary Sjögren’s

Posted on Wed, Dec 10, 2014

describe the imagedescribe the image Should I treat my Sjögren’s differently if I have primary vs secondary Sjögren’s? 

Thedescribe the image terms "Primary and "Secondary" were first used in the 1960s and were devised by researchers who wanted to distinguish between those Sjögren’s patients whose disease was not "complicated" by other major rheumatic or autoimmune disorders. When carrying out research, the investigators wanted to make sure they were looking at purely Sjögren’s  patients and not looking at outcomes for patients who had, for example, both Sjögren’s  and rheumatoid arthritis (RA). They thought that could confuse clinical trials looking at how well a specific therapy worked.  As such things usually happen, though, the terms began to carry over to general clinical diagnosis and medical discussions and thought patterns, and that's where everything became complicated and not helpful for patients and not even helpful for the clinicians treating them. It didn't always make a major difference for the research, either.

So, first, what do the terms mean? "Primary" has been defined as a Sjögren’s patient who does not have another major rheumatic and/or autoimmune disease and "Secondary" as a Sjögren’s patient who does. But as you can imagine, it's not always simple or easily apparent. If a patient has another major rheumatic, autoimmune disease such as lupus, RA, scleroderma or the autoimmune disease multiple sclerosis, they would have traditionally been categorized as have "Secondary Sjögren’s." The term "Secondary" has not been applied to the prevalent autoimmune thyroid diseases, however, which are common in Sjögren’s, and so the terms are somewhat tricky.

Also, investigators have confronted a dilemma when a patient has had Sjögren’s for many years and been labeled as "Primary" and then is diagnosed with another major rheumatic and/or autoimmune disease and automatically being re-labeled as "Secondary Sjögren’s."  And to complicate matters more, some clinicians have now started saying their patient has "Primary Sjögren’s” and "Secondary lupus"(for example) while others undiagnosed the patient from having "Primary Sjögren’s” and changed the diagnosis to "Secondary Sjögren’s." How confusing!

Does it really matter? NO - It certainly doesn't matter to the patient or the clinician treating a patient. It doesn't alter treatment, since treatment for these diseases is based largely on the clinical manifestations and symptoms. All patients should be treated on a case-by-case basis. 

Does the label mean your disease is more or less severe? ABSOLUTELY NOT.  If someone has labeled you as having "Secondary Sjögren’s," it does not mean that your Sjögren’s is less severe or secondary in importance to the other condition. It also doesn't mean that symptoms that were labeled as Sjögren’s symptoms previously are now symptoms of the other disease. Autoimmune diseases often overlap, and sometimes it's difficult to tell if a symptom is Sjögren’s or, say, lupus. In fact, Sjögren’s is the most frequent disorder that occurs in conjunction with other autoimmune and rheumatic diseases, so, again, your signs and symptoms must guide the treatment.

Does the label make a difference as to whether patients are monitored for specific complications or not? NO. Again, your management and treatment should depend on your manifestations of autoimmune disease. You might be labeled as having lupus AND Sjögren’s or rheumatoid arthritis AND Sjögren’s, and then your symptoms and diseases should be managed according to your specific case and with complications specific to each in mind.  

Traditionally, it has mattered to an investigator running clinical trials, but even that is now being called into question. First, diagnosis and pigeon-holing these diseases is not always easy or an exact science. Second, investigators didn't mind if patients with RA or lupus who entered clinical trials also had Sjögren’s  and thought it did not muddy the results of trying a new therapeutic. Why? Because, again, like clinical treatment, the trials were primarily targeted toward clinical manifestations - for example, joint pain, which can occur in several rheumatic diseases including Sjögren’s. While a few manifestations might be distinctive of one disease versus another, such as the joint damage that occurs only in rheumatoid arthritis, the results still were based on the manifestation.

The Sjögren’s Syndrome Foundation is trying to move the medical and scientific community away from these terms, because they usually are NOT helpful or necessary. In fact, they are most often used out of habit, and while we recognize that habits can be hard to change and it can take a long time for a majority to start using different terminology, the SSF is on a mission to accomplish this. Simply put, someone either has Sjögren’s or does not have Sjögren’s. Having another identifiable disease doesn't change the fact that the patient has Sjögren’s, and a somewhat arbitrary decision about which additional diseases and conditions might change a patient between "Primary" and "Secondary" no longer makes sense.
 
-Katherine Hammitt, SSF Vice President of Research

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diagnosing Sjogren's, Sicca, Sjogren's, Joint Pain, Treatment, Advocacy, Primary v Secondary Sjogrens

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