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

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Sjogren's & The Importance of Saliva

 

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."

Learn Sjogren's Coping Tips From a PatientDownload the SSF Self-Help Booklet

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

Living with Chronic Pain

 

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 that have helped others that you also 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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Ask the Doctor: Diagnosing Men & Children with Sjogren’s

 

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.

Click Here to Receive our Newsletter by Becoming an SSF Member

Proud to be Your New Chairman!

 

I am honored that on July 1, I was introduced as the new Chairman of the Sjögren’s Syndrome Foundation Board of Directors.  My wife, Anne, and I became passionate volunteers for the SSF when Anne was diagnosed with Sjögren’s, and I have seen first-hand what it’s like to live with this devastating chronic disease.

describe the imageThe SSF is an inspiring organization and I am personally excited, as well as honored, to be leading us over the next two years! I hope you will join me, and also consider making a donation, as the SSF embarks on a two-year journey to intensely focus on changing the way Sjögren’s is treated, managed and monitored. We can't do this without you.

The past few years have seen amazing progress in awareness and research for Sjögren's. At the last American College of Rheumatology (ACR) Annual Meeting, the premier scientific and clinical meeting for rheumatologists in the United States, more abstracts and presentations specific to Sjögren's were on the program than ever before. The SSF annual educational luncheon, held for rheumatologists during ACR, was standing room only and we had more rheumatologists visit our exhibit booth requesting complimentary patient brochures for their offices than at any previous ACR meeting. 

Additionally, during ACR, late breaking news was announced that six genes specific for Sjögren’s were identified by SSF-supported research at the Oklahoma Medical Research Foundation. This identification is the first time that genes have been connected solely to Sjögren's and marks the beginning of unraveling the genetic basis for Sjögren’s. This research was a huge breakthrough and could lead to determining a patient’s individual risk of certain complications and developing future treatment.

That is why today I am asking for your support.  The SSF needs your help to expand our efforts to educate healthcare professionals, increase clinical trials for new therapies and to develop better diagnostics. Just imagine what these accomplishments would do for the quality of life of a Sjögren’s patient - a matter very close to my heart.

As a proud husband of a Sjögren’s patient, I see the struggles that my wife experiences each and every day and I want nothing more than for her disease to be nonexistent. The critical work of the SSF brings us HOPE for the future as they lead the charge to improve the lives of all patients.

Thank you in advance for your gift as we strive to keep our momentum alive and impact the future of Sjögren’s.

Sincerely,

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Ken Economou
Chairman, SSF Board of Directors

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The Risk of Retinal Toxicity with Plaquenil

 

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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Sjogren's Vs. Sicca Syndrome

 

Sicca is a word derived from the Latin siccus, meaning “dry.” Dryness of the exocrine glands, particularly the eyes and mouth, is referred to as “sicca syndrome” or “sicca complex” when there is no evidence of autoimmune disease present.  While sicca symptoms occur in the vast majority of Sjögren’s patients, not everyone with these symptoms has Sjögren’s. Because of this, it is important to establish an autoimmune cause for the dryness.  Sometimes other causes may be found, such as radiation therapy to the head, certain medications, or Hepatitis C or HIV infections. If no cause is found, the patient should be followed carefully for possible Sjögren’s because it sometimes takes years for the diagnosis to become clear. 

tms cover 2014 April

Dryness from Sjögren’s may affect any organ in the body that secretes moisture. In addition to changing the quantity and quality of saliva and tears, dryness may manifest in the airways, nasal passages, sinuses, throat, skin, and in women, the vagina. Some Sjögren’s patients initially present with recurrent sinus infections, severe vaginal dryness, chronic dry cough, and so on. All types of specialists, not just eye doctors and dentists, need to keep Sjögren’s in mind as a diagnostic possibility, especially when dryness is severe, persistent, or accompanied by systemic symptoms such as fatigue and widespread muscle and joint pain. Dryness can be quite serious, causing dental disease, eye pain and even visual impairment.  However, these issues should not detract from the often missed point that Sjögren’s is much more than sicca syndrome.  Sjögren’s is a serious systemic autoimmune disease that can affect almost any organ in the body. 

-Sarah Schafer, MD

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

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Dry Eye Lifestyle Dos and Don'ts

 

describe the imageAs anyone with Sjögren’s knows, many things can exacerbate the discomfort of dryness, while there are other factors that can either soothe the dryness or advance a condition of moisture that can prevent it.

Here are things you can do on a day-to-day basis that can alleviate your symptoms and help you feel and look better.

The Dos:

  • Do Exercise
    Regular exercise unquestionably does all sorts of good things for us. The main medical benefit is perhaps the power to decrease inflammation, which it does through the release of endorphins. For that reason, exercise contributes to the health of the ocular surface. Regular exercise- at least 20 minutes of exercise that increases your heart rate 5x a week- is highly recommended for dry eye sufferers.

  • Do Take Showers
    A hot bath can be a relaxing indulgence, but the steam tends to rise away from you. It's much better to be upright in a shower, with the steam coming at you constantly. Moreover, whether you intend it or not, water from the shower head or bouncing off your body, splatters into your eyes and literally cleans them out.

  • Do Catch some Zzzzzzs
    I cannot emphasize enough how important getting as much sleep as possible is  to mitigating the discomfort of dry eye. A deep sleep, replenishes the tear film and soothes the ocular surface.

  • Do Drink Water
    You should drink 6-8 glasses of water a day. That's water- plain and simple- not sodas, sugary juices or artificially flavored drinks. Water is needed by all of the body's organs- by the skin, the kidneys, the liver, the heart and the eyes as well.

  • Do Keep up with Friends & Family
    There is increasing evidence that social interaction is as good for us as exercise, a good night's sleep or eating natural food. It is also a fact that the smile you wear while you're happy with friends can actually reduce the exposure of the ocular surface.

The Don'ts:

  • Don't get Stressed
    Stress can affect many other factors that have a direct impact on dry eye: sleep, your blink rate, and even what you eat. All of that leads to the kind of inflammation that can exacerbate a range of ailments, including a dry eye disorder. There are many different kinds of stress and there are many ways to manage it. Find the way that works for you, and learn as best you can to keep stress at a minimum.

  • Don't work your eyes too long
    Perhaps the most important thing to avoid if you suffer from dry eye is a long stretch of consecutive visual tasking. Whether it's working at a computer, watching television or reading- break up the time you spend doing it.

  • Don't Smoke, Drink Alcohol or Caffeine
    Smoke, alcohol and caffeine all dehydrate the body, including the eyes. Be aware of what these activities are doing to your dry eye, and try to reduce the frequency or eliminate all three if you can.

This information is provided by Robert Latkany, MD
Author of "The Dry Eye Remedy" and Founder & Director of the Dry Eye Clinic at the New York Eye & Ear Infirmary

Thank you to our Dry Eye Awareness Month Partner:

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Dry Eye Awareness Month: Ask the Doctor Q&A

 

July is Dry Eye Awareness Month! The Sjögren’s Syndrome Foundation partners with various companies during July to help educate the public about dry eye symptoms, treatment options, and the possible cause being Sjögren’s. We hope you enjoy our July blogs aimed to promote dry eye awareness and education.   

Q) Many eye drops claim to have disappearing preservatives. Are these the equal of preservative- free drops, or should they still be used like eye drops with standard preservatives?

describe the imageA) The development of “disappearing preservatives”  has allowed eye drops to be formulated in multi-use  dropper bottles for convenience without the risk of surface damage that can occur with the more potent and persistent  preservatives. The mechanism by which such new preservatives “disappear” is usually due to chemical changes in the preservative that occur upon exposure to air or the tear film. The most common such chemical reaction is oxidation of the preservative, turning it into an inactive molecule. It must be remembered, nevertheless, that the inactive molecule can be something to which sensitive patients may react. It is worthwhile, therefore, that the patient be alert to any intolerance of such medication which can occur as irritation, discomfort or red eyes. The “disappearing preservative” eye drops can be used up to four times a day in most cases without difficulty and some patients can use them even more frequently than drops with regular preservatives. It should be remembered that other eye drops, particularly those used to treat glaucoma, can contain preservatives as well and, therefore, it is important for patients to keep track of how many drops are being instilled in the eye during the day.

Truly preservative-free eye drops contain no such preservative chemicals but, therefore, require special packaging that limits the amount of the solution in the dropper to usually only one or two drops. The challenges of the smaller packaging can be a nuisance, but if the patient is sensitive to even the “disappearing preservative” this nuisance can be worth the better tolerance to the lubricant.

-Gary N. Foulks, MD

Thank you to our Dry Eye Awareness Month Partner:

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Top 10 Tips for Combating Gastroesophageal Reflux

 

describe the imageWhile the exact reasons are unknown, many patients with Sjögren’s suffer from gastroesophageal reflux disease (GERD). This can cause a wide variety of symptoms that can be mistaken for other conditions. Symptoms may include persistent heartburn and/or regurgitation of acid, stomach pain, hoarseness or voice change, throat pain, sore throat, difficulty swallowing, sensation of having a lump in the throat, frequent throat clearing and chronic cough (especially at night time or upon awakening).

Tips for combating gastroesophageal reflux in the throat:

1. Avoid lying flat during sleep. Elevate the head of your bed using blocks or by placing a styrofoam wedge under the mattress. Do not rely on pillows as these may only raise the head but not the esophagus.

2. Don’t gorge yourself at mealtime. Eat smaller more frequent meals and one large meal.

3. Avoid bedtime snacks and eat meals at least three-four hours before lying down.

4. Lose any excess weight.

5. Avoid spicy, acidic or fatty foods including citrus fruits or juices, tomato-based products, peppermint, chocolate, and alcohol.

6. Limit your intake of caffeine including coffee, tea and colas.

7. Stop smoking.

8. Don’t exercise within one-two hours after eating.

9. Promote saliva flow by chewing gum, sucking on lozenges or taking prescription medications
such as pilocarpine (Salagen®) and cevimeline (Evoxac®). This can help neutralize stomach acid and reduce symptoms. Check the SSF's Product Directory (free of charge to all SSF members) to see the products available.

10. Consult your doctor if you have heartburn or take antacids more than three times per week. A variety of OTC and prescription medications can help but should only be taken with medical supervision.

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The SSF thanks Soo Kim Abboud, MD for authoring this Reflux and Your Throat Patient Education Sheet. Dr. Abboud is an Assistant Professor with the Department of Otolaryngology, Head and Neck Surgery, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania.

Tips for Muscle and Joint Pain in Sjögren’s

 
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Joint and muscle pain in Sjogren’s syndrome may result from a variety of causes including inflammation, fibromyalgia, age-related osteoarthritis, vitamin D deficiency, hypothyroidism etc.

Work with your rheumatologist to identify the specific cause(s) of your pain and find the best treatment regimen for you. Maintain a positive attitude and be an active partner in the management of your pain.
The tips below will also help:

  • Become knowledgeable about your medications
  • Get a good night’s sleep
    • Maintain a regular sleep schedule.
    • Set aside an hour before bedtime for relaxation. Listen to soothing music.
  • Consider taking a warm bath before going to bed
    • Make your bedroom as quiet and comfortable as possible.
    • Avoid caffeine and alcohol late in the day.
    • Avoid long naps during the day.
  • Exercise regularly with the goals of improving your overall fitness and keeping your joints moving, the muscles around your joints strong and your bones strong and healthy
    • A physical therapist, occupational therapist, or your health-care provider can prescribe an exercise regimen appropriate for your joint or muscle problem.
    • Start with a few exercises and slowly add more.
    • Make your exercise program enjoyable. Do it with your spouse or a friend. Include recreational activities, such as dancing, walkingand miniature golf.
    • Try different forms of exercise, such as Tai chi, yoga and water aerobics.
  • Balance rest and activity
    • Pace yourself during the day, alternating heavy and light activities and taking short breaks to rest.
  • Control your weight
  • Protect your joints and muscles
    • Use proper methods for bending, lifting, and reaching.
    • Use assisting devices, such as jar openers, reach extenders and kitchen and garden tools with large rubber grips that put less stress on affected joints.
  • Use various therapeutic modalities that can relieve joint and muscle pain
    • Use heat (heating pads, warm shower or bath, paraffin wax) to relax your muscles and relieve joint stiffness.
    • Use cold packs to numb sore joints and muscles and reduce inflammation and swelling of a joint
    • Consider massage therapy.
    • Practice relaxation techniques, such as guided imagery, prayer and self-hypnosis. 
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Thank you Alan Baer, MD for these tips. Dr. Baer is an Associate Professor of Medicine, Director, Jerome L. Green Sjogren’s Center, Johns Hopkins University School of Medicine
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