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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 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

30 Ways You Can Increase Sjogren’s Awareness this April!

 

217061 196364960401609 6479975 nYou are the voice of the Sjögren’s Syndrome Foundation and the reason for its existence.  April is Sjögren’s Awareness Month and we want to help by giving you 30 ways to increase awareness through a different Sjögren’s fact or tip every day on our Facebook and Twitter pages. 

Awareness comes in many forms and we encourage you to follow us for the next 30 days and look for opportunities to talk about Sjögren’s and the SSF in your life.  You can help make Sjögren’s a household name!

#TipTuesday: Talking about your disease can help reduce the anxiety associated with a chronic illness, but the SSF knows how difficult that can be when friends, family and some physicians can’t even pronounce Sjögren’s (SHOWgrins).  With an estimated 4 million Americans living with Sjögren’s, do the people in your life know how to pronounce it?

Please share this with your family and friends to help raise awareness of Sjögren’s this April! 

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An Advocacy Victory!

 


The Sjögren’s Syndrome Foundation (SSF) is proud to be a member of the National Coalition of Autoimmune Patient Groups (NCAPG) and join with similar organizations to represent the voice of our members and all Sjögren’s patients.

This past Friday, the SSF stepped up to support the American Autoimmune Related Diseases Association (AARDA) and other coalitions that petitioned the Centers for Medicare & Medicaid Services (CMS) proposal to discontinue the inclusion of all immunosuppressants as a required drug category under Medicare Part D formularies.The SSF submitted its own comments as well to the CMS about the proposal.

Today we are happy to announce that the Administration will not finalize at this time ANY of the changes it had proposed to the Six Protected Classes policy in its Part D proposed rule issued in January of this year!

As a nonprofit organization representing the 4 million Americans who suffer from Sjögren’s, the second most common rheumatic/autoimmune disease, the SSF believes it is crucial that access to life-saving and life-altering care not to be impeded in any way.

Because Sjögren’s patients often present as complex cases, with no two patients being exactly alike and tend to have multiple autoimmune disorders that contribute to the complexity of management and treatment, patients and their physicians together need to be free to decide which therapies are best suited for each patient specifically. Though the SSF appreciated the fact that CMS wanted to improve quality and costs for patient care, we believe the best way to do so is to ensure critical access to care and let the protected class status remain for immunosuppressants in Medicare Part D.

The SSF wants to thank all of our members as your support allows us advocate on behalf of all patients! We are excited that our combined efforts paid off and millions of Medicare beneficiaries will continue to have greater health care options and access to their vital medications.

Click Here to view the Medicare Proposed Changes

Click Here to view a copy of the CMS Letter to Senator Kay Hagan on the Proposed Medicare Advantage and Part D Rule

Donate to Support SSF Education\u0026amp\u003B Awareness Programs

We LOVE our Friends!

 

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Today, the SSF wants to Sjö how much we appreciate you and your support by giving away complimentary registrations to three people for the 2014 SSF National Patient Conference "Solving the Sjögren’s Puzzle" April 25-26, 2014 at the Hyatt Regency O’Hare, (Rosemont, Illinois).

 

Congratulations to our winners: Carlie, Evon & Ray!

The winners have all been notified personally by the SSF and thank you all for the support!


Entering is easy! 

To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2014. The Foundation will privately email the three winners on Tuesday, February 18, 2014. 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.

Presentation Topics Include:

        • Overview of Sjögren's Syndrome 
        • Pulmonary Issues and Sjögren’s
        • Dry Eye / Dry Mouth and Sjögren’s 
        • What is in the Clinical Trial Pipeline?
        • Gastrointestinal Issues and Sjögren’s
        • Clinical Practice Guidelines Overview
        • Nutrition, Wellness and Autoimmune Disease
        • Overlapping Major Connective Tissue Diseases
PHOTO   Mary McDonough   Auntiemaryblack3 2

We are delighted to have Mary McDonough as our 2014 Keynote Speaker – you won’t want to miss this informative and moving presentation!

  View the 2014 SSF National Patient Conference Brochure

What is Sjögren’s Syndrome?

 

Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands, significantly decreasing the quantity and quality of saliva and tearsThe disease was first identified by a Swedish physician, Henrik Sjögren, in 1933.

Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren’s may cause dysfunction of other organs, affecting the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the nervous system. Patients also have a higher risk of developing lymphoma. 

Today, as many as four million Americans are living with this disease. Learn more about Sjögren's and the Sjögren’s Syndrome Foundation in this short video:

Watch Steven Taylor, SSF CEO, talk more about the Foundation and the work being done to fulfill our mission of helping patients cope with their Sjögren's, increase awareness, and support research, in this ten question interview:

The SSF exists only because of its members and supporters.

By adding your voice to the fight against Sjögren’s and becoming a member, you are helping to strengthen our organization. When bound together, these voices help the SSF when we advocate for new treatments, new coverage for health insurance and when talking to companies about supporting the SSF.

With each member, the SSF voice will get stronger and we will finally make Sjögren’s a household name. 

Please join with us!

Click Here to Become an SSF Member

Patients Sharing with Patients: Tips to Cope with the Winter Blues

 

Weather can affect everyone differently, and some people prefer colder temperatures. Although when living with certain chronic illnesses, like Sjögren's, winter weather can have a negative effect on a person's symptoms, such as joint stiffness or dry skin, and also on a person's mood. 

Learning to live with Sjögren's is learning what your body's new normal is- this includes taking care of both your physical and emotional symptoms.  

Recently the Foundation has received a lot of questions about this topic and since some of the best tips the Foundation knows have come from patients, we want to hear from you!

winter blues party
  • What cold weather problems do you find the most difficult when managing your Sjögren's and how do you deal with them effectively?
     
  • When the winter blues hit, how do you manage to say positive when also coping with Sjögren's?
     
  • What advice would you give to a fellow patient dealing with the depression?
     

Just as one tip may work well for one patient but not another, you will need to discover what tips and coping strategies work best for your body. That is why tips and suggestions of all kinds are welcome and encouraged as a way to help fellow Sjögren’s patients.

Please comment below and share with us what you would suggest.

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