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

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 Moisture Seeker, SSF's patient
newsletter for members.

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

Learning to Thrive with Sjogren’s

Posted on Wed, Apr 01, 2015

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30 Words for Sjögrens Awareness 

April is Sjögren’s Awareness Month and you are the voice of the Sjögren’s Syndrome Foundation. That is why this April we will be using your words to help raise awareness of the disease. Last week we asked: "If you are living with this disease or know someone who is, what one word represents 'Sjögren’s' to you?"

For the next 30 days, we will be posting one word every day that describes what the disease means to those affected by it, along with a fact or tip that relates to the word.

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Awareness comes in many different forms, which is why we hope you will share our posts on your social media pages and help make Sjögren’s a household name!

#Day1: Complex. Sjögren’s is not a “cookie cutter” disease & affects patients differently. Many patients experience dry eyes, dry mouth, fatigue and joint pain, but Sjögren’s also causes dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. And while some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning.

We encourage you learn more about the various symptoms of Sjögren’s by clicking here.  #30Words4Sjögrens #SjögrensAwarenessMonth #Learning2Thrive 

Click here to view our daily campaign on Facebook!

30WordsApril

Topics: Symptoms, April Awareness Month

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

Peripheral Neuropathy and Sjogren's

Posted on Thu, Nov 20, 2014

There are many different types of neuropathies in Sjögren’s. These neuropathies can have different causes and may require different diagnostic techniques & therapeutic strategies. Unlike other autoimmune disorders, in which the neuropathies predominantly cause weakness, the neuropathies in Sjögren’s primarily affect sensation and can cause severe pain.

Recognition of unique patterns & causes of neuropathies in Sjögren’s is important in arriving at appropriate therapies.

Top 10 Peripheral Neuropathy & Sjögren’s Facts:

1. Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjögren’s do not come on suddenly, reduction of neuropathic pain can take a while.  

2. Initial and predominant neuropathies in Sjögren’s can occur anywhere in the feet, thighs, hands, arms, torso and/or face.

3. Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.

4. While the class of tricyclic anti-depressants (TCAs) often constitutes a first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjögren’s patients.

5. Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.

6. Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of three millimeters and not requiring any stitches), can help in the diagnosis.

7. A relatively rare neuropathy can cause significant weakness in Sjögren’s patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called “mononeuritis multiplex” occurs because the blood-flow through vessels which nourishes nerves is suddenly compromised.

8. In general, immunosuppressive medications are almost always warranted to treat “mononeuritis multiplex” neuropathy. In contrast, the role of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.

9. Sjögren’s patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.

10. Neuropathic pain can be alleviated and assuaged, although there may initially be a “trial-and-error” process with different and perhaps multiple agents.

The information from this post, provided by rheumatologist and neurologist Dr. Birnbaum, was first published in The Moisture Seekers, SSF's member newsletter.

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Additional Resources:

Topics: Symptoms, Sjogren's, Joint Pain, Treatment, Top 5 Tips, Chronic Pain, Peripheral Neuropathy

Sjogren's & The Importance of Saliva

Posted on Tue, Oct 28, 2014

Dryness from Sjögren’s may affect any organ in the body that secretes moisture, because the body’s immune system is mistakenly attacking its own moisture-producing glands. Almost every Sjögren’s patient experiences some degree of dry mouth, which is caused by a decrease in both the quantity and quality of saliva.

Saliva plays an immensely important role in the oral cavity, which is why proper dry mouth care and attention is critical for a person’s overall oral health. If dry mouth persists for months or years, the decreased salivation can lead to many oral complications such as severe and progressive tooth decay, oral infections (particularly fungal), difficulty swallowing, or a combinations of these. Dr. Rhodus explains more below about the importance of saliva:

Saliva

"A human being normally produces approximately 1.5 liters of saliva per day. There is a typical diurnal circadian rhythm in the production of that saliva with one peak in the mid-morning followed by a relative decrease until the second peak occurs around early evening.

Saliva flow normally is decreased at night. Saliva is produced by several glands: the submandibular glands (which lie bilaterally just under the posterior jaw) produce most of the quantity of saliva (45%) and it is a mixed fluid with both mucous (thick, stringy fluid) and water but containing most of the proteins; the paired parotid glands (which are in the mid-face just in front of the ears) produce primarily serous (or watery) fluid and accounts for about 35% of the total quantity; the sublingual glands (again in a pair just beneath the anterior tongue) are much smaller and contribute only about 10% of the total volume; and finally there are hundreds of small minor salivary glands in the lips, palate and throat which contribute a relatively small, but important portion of natural salivary flow.

The normal quantity of saliva naturally provides necessary oral lubrication and moisture to assure comfort and function for the individual, but saliva does much more than that. At least equally as important as this volume of saliva, if not more so, is the composition of saliva, which is rich in constituents which have potent digestive, coating, protective, antimicrobial, antiacid, lubricative and homeostatic properties. Saliva is much more than water. In fact, saliva contains approximately 60 important, protective constituents including: immunoglobulins,electrolytes, buffers, antimicrobial enzymes, digestive enzymes and many others, all of which make saliva an essential contributor to the health and homeostasis of the oral cavity. This is the reason that water or artificial salivas are a poor substitute; none of them have the rich composition of ones own natural saliva."

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This post is the introduction from "The Importance of Silvia" article written by Nelson L. Rhodus, DMD, MPH, FICD, that was first published in The Moisture Seekers, SSF's member newsletterSSF members can click here to read the full article on the members section of the website.

Topics: Sinuses, Sicca, Dry Mouth, Symptoms, Sjogren's, Saliva, Burning mouth

Living with Chronic Pain

Posted on Thu, Oct 16, 2014

describe the imageIt is not unusual for some illnesses involving chronic pain to take years to find an accurate diagnosis. Patients may see a dozen or more doctors while seeking help, answers and relief. Some may have multiple medical appointments in the span of just one week. They may see different specialists for different symptoms, as if body parts function independently of one another. The patient may be on many medications, coping with side effects that can be brutal, and too many of these services focus on what the patient cannot do with little or no attention paid to what they can do. The very process can leave the patient feeling more helpless, more depressed, more fatigued, more stressed. How frustrating must it be to have the very things you do to get better and regain control of your life make you worse?

If you or someone you know is one of these patients, here are some tried-and-true ideas you may find helpful:

  • First, do not settle for bad medicine. Acknowledging that these cases do not fit well into today’s quick medical model, if you do not feel heard or helped, find another doctor. If that doctor does not meet your needs, find another doctor. Bear in mind that cheapest in the short run may end up being the most expensive long term if you are not getting good results. There are many good, skilled and caring doctors, but it may take some time to find the right one for you. The physician who is willing to be your partner and your educator and treat you with dignity and respect is the right choice for you.
     
  • Be your own advocate. No one knows your body better than you. No one knows your pain better than you. No one knows what makes you happy better than you. You are the expert on you.
     
  • Resist buying into the idea that our medical system is so broken good treatment is not available. I will never debate the idea that the system is broken. I will debate the idea that good treatments are not available. It may require defining and redefining what constitutes “good treatment” as you figure out what works best for you, but you will know it when you find it.
     
  • Just because a treatment may be considered “holistic” does not mean it does not have value. Just because something is approved by your insurance company does not mean it does have value. Neither comes with any guarantee and both should be met with healthy skepticism. Leaving any positive option out of the mix is a missed opportunity.
     
  • Remember to pay as much attention to your mental health as you do your physical health. The mind-body connection is real and plays a major role in combating any illness.
     
  • Consider limiting the number of medical appointments you have in one week, if at all possible. Too much focus on what ails you can bring down the best mood and invite in the boogeyman at 3am with dark thoughts that never helped anyone. Too many appointments also can eat up time that would have been available for a yoga class, a trip to the gym, or lunch with a good friend. Balance is important.
     
  • I know you’ve heard this one before: You are what you eat. A deprivation diet is not necessary or helpful or sustainable, but a healthy diet filled with a rainbow of foods that are good for all of us are even more important for those with special needs. Consider including a qualified nutritionist in your treatment team. Click here to view SSF suggested nutritional resource available for purchase, "The Immune System Recovery Plan"
     
  • Take a relationship inventory. If you have people around you who drag you down, who think they know what is best for you better than you and your doctors, or who may even question the reality of your illness, it’s time to clean house. The drain of toxic people and toxic relationships sucks away energy better used in creating your best possible life.
     
  • Whatever you love doing, do it - and then, do it again!

This article by Darlene Cross, MS, MFT, was first printed in the March 2013 issue of The Moisture Seeker, SSF's patient newsletter for SSF members.

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Topics: Diet, Symptoms, Sjogren's, Fatigue, Treatment, coping with sjogren's, Chronic Pain

Ask the Doctor: Diagnosing Men & Children with Sjogren’s

Posted on Tue, Sep 30, 2014

Is there any speculation as to what’s driving this big upswing in the diagnosis of men and children with Sjögren’s?

My gut feeling is that it has to do with the improvements in awareness and medical and dental education in recent years. AJ newThe Sjögren’s Syndrome Foundation (SSF) has spent years trying to train the physicians and nurse practitioners about how prevalent and serious the disease is. We finally have a celebrity who unfortunately was diagnosed with Sjögren’s and although nobody likes to see somebody become ill, it has done a lot to help the entire public realize how serious it is, particularly the idea that people look a lot better than they feel and that it may take years to diagnose it unless you take the symptoms seriously.

I can tell you at the University of Pennsylvania, where I work, the oldest medical school in the United States, we only started giving our first Sjögren’s lecture to the first year medical students about four years ago. And that was only after years of me fighting with the curriculum committee to get it included in the rheumatology course for the first year students. So, we’ve made a lot of progress and I think that’s an example of the benefits of all this work.
-Frederick B. Vivino, MD, MS, FACR

This "Question & Answers" article was first printed in the The Moisture Seeker, SSF's patient newsletter for members.

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Topics: Diagnosing Sjogren's, Symptoms, Sjogren's, 50in5: Breakthrough Goal, Men with Sjogren's, Children with Sjogren's

The Risk of Retinal Toxicity with Plaquenil

Posted on Fri, Aug 29, 2014

Plaquenil, hydroxychloroquine (HCQ), is an anti-malarial medication that has been proven to be useful in the treatment of patients with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and other inflammatory and autoimmune diseases. In Sjögren’s, Plaquenil is used to treat many symptoms of Sjögren’s including fatigue, joint symptoms of arthritis and arthralgias (joint pain), dry mouth and dry eyes. Similar to its use in systemic lupus erythematosus, many clinicians feel that it is useful in reducing general Sjögren’s “disease activity.”

sidebar treatmentsOne of the reasons that physicians feel comfortable in prescribing Plaquenil is its low risk to benefit ratio. This means that the side effects of Plaquenil are mild and infrequent compared with its potential benefits. As with any medication, allergic reactions including skin rashes and non-allergic reactions can occur. The side effect that is of greatest concern is retinal toxicity.

Retinal toxicity of Plaquenil may manifest itself with subtle disturbances of the retinal pigment epithelium which may eventually lead to complete destruction of the macula in the form of bull’s-eye maculopathy.

Several risk factors may increase the likelihood of retinal toxicity from Plaquenil such as, age of greater than 60 years, daily dose more than 6.5 mg/kg; use of the drug more than 5 years, obesity, preexisting retinal disease and, renal or liver failure. Early detection of the maculopathy is of critical importance to discontinue Plaquenil in order to stop or slow retinal damage. Unfortunately, clinically evident early structural changes can be subtle and usually preceded by abnormalities in functional tests such as visual field examination, multifocal electroretinography (mfERG), fundus autofluorescence (FA) imaging, and optical coherence tomography.

Recent findings suggest that Plaquenil toxicity can develop among patients that are taking the drug at a daily dose lower than the suggested “safe” dose and/or have been on Plaquenil for shorter than five years. Unfortunately, cessation of Plaquenil intake may not be a remedy since not infrequently, patients will develop objective evidence of progression despite discontinuation of the drug. Thus, the possibility of toxicity should not be disregarded and close monitoring of the ocular findings is required.

As a precaution, patients treated with Plaquenil are advised to get a baseline eye exam prior to starting the drug and then annually thereafter

This information provided by Neil I. Stahl, MD & Tongalp H. Tezel, MD was first printed in the The Moisture Seeker, SSF's patient newsletter for members.

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

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