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

Acupuncture for Dry Eye

Posted on Mon, Jul 15, 2019

acupuncture July is Dry Eye Awareness Month!  We hope you enjoy this blog post aimed to promote dry eye awareness and education.

The “Living with Sjögren’s” patient survey, conducted by Harris Poll on behalf of the Sjögren’s Syndrome Foundation, SSF, showed that 92% of Sjögren’s patients suffer from dry eye. Chronic dry eye has two main causes: decreased secretion of tears by the lacrimal (tear-producing) glands and loss of tears due to excess evaporation. Both can lead to ocular surface discomfort, often described as feeling of dryness, burning, a sandy/gritting sensation, itchiness, visual fatigue, sensitivity to light and blurred vision. In Sjögren’s, a person’s white blood cells mistakenly invade moisture-producing glands and affects the entire body, including the lacrimal glands, causing inflammation and reducing secretion, which causes dry eye to be one primary symptoms of the disease.

Chronic dry eye does not typically get better on its own, and often times it will get worse. Acupuncture is a very safe treatment, and apart from occasional bruising, its side effects typically include improved sleep quality, relaxation of tense muscles, and a sense of wellbeing.

Question_and_AnswerCan acupuncture increase moisture with dry eyes?

The beauty of acupuncture is that it does not build a dependency and in fact builds independence by helping to rebuild and restore function to various body systems.

A study published in the Chinese Journal of Practical Ophthalmology “found that patients receiving acupuncture plus lubricant eye drops had a 76.92% improvement in rate of dry eye symptoms. Patients receiving only lubricant eye drops had a 53.85% improvement. Tear film stability improved significantly with acupuncture. Patients receiving acupuncture plus eye drops had a tear film break-up time of 4.03 seconds compared with 2.11 seconds for the eye drop only group.” This means that acupuncture resulted in increased tear production and slower tear evaporation, so tears last longer.

Another study, published in Ophthalmology Times, found that acupuncture “significantly improved patients’ subjective assessment of dry eye symptoms, was associated with significant reduction in use of artificial tears at six months, and its benefits lasted for 9-12 months.”

Having an autoimmune disease, like Sjögren’s, can be stressful and overwhelming at times, often leading to poor sleep quality. All of these work against creating and maintaining healthy levels of serotonin, which is fundamental to healthy tear production.

Receiving regular acupuncture helps maintain healthy serotonin levels, as well as to decrease inflammation, increase circulation, and stimulate the nervous system to focus on a specific region, such as the eyes.

What does this mean for Sjögren’s patients?

It means that although you have Sjögren’s and may always have to work to maintain a reasonable number of tears, a combination of diet, stress management, and acupuncture may be able to minimize and help keep your symptoms at bay.

Dr. Townsend, adjunct professor at the University of Houston College of Optometry, says that “the potential patient benefits of acupuncture suggests that, at the very least, we should consider contacting an acupuncturist and explore working together as a possibility.”

Acupuncture has become so popular in the past few years that everyone is adding it to their list of services. Look for a National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM®) board certified acupuncturist who has a minimum of four years of formal training and countless hours of clinical experience to ensure the best possible experience.

by Chris Leininger, DACM (c), Dipl. Ac. & ABT (NCCAOM), L.Ac., Founder and Director of Pure Health Acupuncture, LLC in Brazil, IN.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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

Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Natural Treatments, Acupuncture Treatment

Did You Miss the 2019 Sjögren's Conference?

Posted on Sat, Jun 29, 2019

2019 NPC CDIf you missed the SSF 2019 National Patient Conference, you can now get all the vital information you need in an audio format!

Seven of our most popular talks from the Sjögren's National Patient Conference held in Woburn, Massachusetts, are available for purchase. Each talk is 30-40 minutes long and comes with the handouts used by the presenter so you can follow along.

 

Available Audio Talks from the 2019 National Patient Conference:

  • The Complexities of Sjögren’s: An Overview, by Theresa Lawrence Ford, MD
  • Oral Manifestations of Sjögren’s, by Vidya Sankar, DMD, MHS
  • Fatigue and Sjögren’s, by Donald E. Thomas, Jr., MD
  • Understanding Blood Changes and Lab Results, by Alan N. Baer, MD
  • Ocular Manifestations of Sjögren’s, by Esen K. Akpek, MD
  • Nutrition, Wellness and Autoimmune Disease, by Lauri Lang, RDN, LDN
  • How Sjögren’s Can Impact the Central Nervous System, by Edward A Maitz, PhD

Click here to view audio downloads  from SSF National Patient Conferences 

Click here to view audio CDs  from SSF National Patient Conferences 

(You must be logged in to purchase at the Member Price. Double check that you are receiving the correct price before finalizing your purchase.) 

These audio presentations are an excellent way to have a permanent resource with some of the most vital information available to Sjögren's patients. Purchase just the talks you want to hear or purchase the whole set! 

Click here to order one of our available 2019 talks or you can order by calling our office toll-free at 1-800-475-6473.

Topics: Nutrition, Dry Mouth, Dry Eyes, Symptoms, National Patient Conference, #ThisIsSjögrens, Sjögren’s, Central Nervous System

Ask the Expert: Sjögren’s and Fibromyalgia

Posted on Wed, May 31, 2017

Sjogren's Body 2017.png

"I have been diagnosed with Sjögren’s and fibromyalgia. How do I know what symptoms are because of my Sjögren’s and which are from the fibromyalgia? 

Should I change how I treat a symptom based on which disease caused it?"

There are many symptoms of Sjögren’s and fibromyalgia that overlap, and many people suffer from both conditions simultaneously, so this is a very good question. For example, both disorders can cause symptoms of dry eyes. If the dry eyes is due to Sjögren’s the person’s eyes will actually be dry, and artificial tears or medications to increase tearing can help. That same symptom seen in fibromyalgia is not due to the eye really being dry, but instead the nerves throughout the body being more sensitive, and feeling dryness when there is none.

Pain is another symptom that both disorders can cause. If it is from Sjögren’s the pain will typically be in the joints, whereas if it is due to fibromyalgia it can be anywhere, and will especially involve the trunk, muscles, etc.

Fatigue is a characteristic of both disorders as well, but it is difficult to differentiate the fatigue of Sjögren’s from that of fibromyalgia, except by “the company it keeps.” By this I mean that if you have overall symptoms of fibromyalgia (pain in many areas, sleep problems, sensitivity to brightness of lights, noises, odors, etc), then the fatigue you are experiencing is likely more due to the fibromyalgia, whereas if there are no other symptoms of fibromyalgia and you primarily are experiencing symptoms of Sjögren’s, then the fatigue is more likely due to the Sjögren’s. 

by Daniel Clauw, MD, Michigan

 

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

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



 

Topics: Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Chronic Pain, Ask the Expert, Fibromyalgia

Ask the Expert: How will the recently published SSF Ocular Clinical Practice Guidelines for Sjögren’s affect you

Posted on Fri, Nov 11, 2016

Question_and_Answer-1.jpg"How will the recently published Clinical Practice Guidelines (CPG) for Ocular Management affect my next visit to my eye care professional?"

The recently published SSF Clinical Practice Guidelines for Ocular Management of Sjögren’s were developed to provide evidence-based recommendations for physicians and eye-care providers to advise a logical sequence of treatment options for dry eye. One aspect of the recommendations was to describe methods of grading the severity of dry eye disease and basing therapy on severity and the patient’s response to previous therapy. The guidelines also put into perspective some of the recently developed techniques for diagnosing dry eye and monitoring therapy.

Many of the measures described in the report have been used by practitioners in previous therapy of dry eye, but some of the newer options may not yet have been incorporated into all eye care practices and the described system of grading severity may be new to some practices. Therefore, the effect of the published guidelines may have different implications to different patients.

Your physician or eye care provider may discuss some of the newer options for diagnosis and grading of severity in particular cases. This will probably be true for the testing of tear osmolarity and testing for presence of the inflammation marker MMP-9, as those new tests are of assistance in grading severity of dry eye and recommending treatment options, as well as monitoring the effect of some treatments. Some of the recommendations for such testing may depend upon availability of the in-office tests and whether the symptoms or signs of dry eye have changed in particular patients. The provider may advise additional testing or a change in therapy, but not all patients will require such testing or altered treatment.

The treatment options recommended by a patient’s care provider will depend upon the severity of dry eye disease and the response to previous therapy as well as any existing contraindications to particular treatment options. It also is important to remember that these are recommended guidelines and not mandatory standards of care for all patients with dry eye. The clinical evaluation and overall assessment of each individual patient determines appropriate management as well as the cost/benefit balance for any given patient.

Click here to view the U.S. Clinical Practice Guidelines  for Ocular Management in Sjögren’s  

by Gary N. Foulks, MD
Co-Chair of the Ocular Working Group for the Sjögren’s Syndrome Foundation Clinical Practice Guidelines Committee
 

This information was first printed in The Moisture Seeker, SSF's member newsletter.

Click here to learn more about the SSF Sjögren’s Clinical Practice Guidelines initiative   

Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Ask the Expert, Serum Tears, Clinical Practice Guidelines for Ocular Management, Clinical Practice Guidelines

Proud to be Your New Chairman!

Posted on Mon, Sep 26, 2016

Cohen20portrait20201420-120-20Copy.jpg

I am honored to be the new Chair of the Sjögren’s Syndrome Foundation’s (SSF) National Board of Directors. Having served on the Board for the past five years, I have seen first-hand the incredible work being done by the SSF and the impact the Foundation has made on the lives of those living with Sjögren's.

As a practicing optometrist for thirty years, I have had the pleasure of holding leadership positions in numerous community and professional eye care organizations. With all this experience, I can confidently say that there is something truly different about the SSF. The CEO, Steven Taylor, has built an organization in which the volunteer board and the professional staff work together in an efficient and cooperative way. He has engaged hundreds of volunteers from across the country to help increase awareness, raise funds, lead events and promote the work of the SSF. He has established a Board that is made up of a combination of patients, family members of patients, doctors, along with others who have an interest in the disease. The SSF staff never treats their work as a job, but rather as a calling to make a difference in the lives of those struggling with this devastating disease.

The SSF works in many areas to ensure that no stone goes unturned and that every program and project is evaluated with the patient in mind! The SSF has a strong advocacy and research arm that is working with pharmaceutical companies to develop a therapeutic for Sjögren’s. Recently, the SSF held an introductory meeting with the FDA to help launch an ongoing dialogue about clinical trials for new therapeutics in Sjögren’s. In addition to this work, the SSF also has brought together professional leaders in all areas of care to produce and publish the first-ever Sjögren’s clinical practice guidelines that doctors can now use as a roadmap for how to appropriately care for Sjögren’s patients. And our strong focus on educating patients and their families can be seen by our annual national patient conference and our more than 65 patient support groups in the United States.

As Board Chair, I am honored to be representing all Sjögren’s patients. I am truly proud to be a part of this outstanding organization and hope you’ll join with me by supporting the SSF. TOGETHER, we can continue our momentum and improve the quality of life for all those who suffer with Sjögren’s!

SSF_Board.png


Click Here to  Become an SSF Member

Topics: Dry Eyes, Sjogren's, Advocacy, Research, Clinical Trials

Clinical Practice Guidelines for Ocular Management in Sjögren’s

Posted on Wed, Jul 20, 2016

July is Dry Eye Awareness Month! During July, the Sjögren’s Syndrome Foundation works 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 education and encourage you to share this post.

The Sjögren’s Syndrome Foundation (SSF) has developed the first-ever U.S. Clinical Practice Guidelines for Ocular Management in Sjögren’s to ensure quality and consistency of care for the assessment and management of patients.

The SSF Clinical Practice Guidelines for Ocular Management in Sjögren’s established that, in a given patient, the clinician must determine whether the dry eye is due to inadequate production of tears, excess evaporation, or a combination of both mechanisms. The success of a treatment option depends upon proper recognition and approach to therapy.

Click here to view the SSF Clinical Practice Guidelines for Ocular Management in Sjögren’s and its recommendations.

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The SSF Sjögren’s Clinical Practice Guidelines initiative is funded fully by the SSF with no corporate or pharmaceutical industry support. The SSF would like to thank our committee chairmen and members of the ocular working group for volunteering their time and expertise to develop these guidelines. We would also like to thank all SSF members and our generous supporters for helping to make the dream of Sjögren’s Clinical Practice Guidelines start to become a reality! 

Click here to view the U.S. Clinical Practice Guidelines  for Ocular Management in Sjögren’s   

Topics: Sicca, Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Punctal Plugs, Clinical Practice Guidelines for Ocular Management, Clinical Practice Guidelines

Dry Eye Awareness Month: Serum Tears & Sjögren’s

Posted on Fri, Jul 01, 2016

July is Dry Eye Awareness Month! The Sjögren’s Syndrome Foundation partners with various organizations 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) I have heard a lot about some Sjögren’s patients finding relief from Serum Tears. What are they, how are they made and will it help me with my dry eye?

SSF_Dry_Eye.jpgA) Topical autologous serum used to treat ocular surface damage from dry eye disease is usually reserved for the most severe cases that have not responded to other treatments, particularly intensive lubricant and anti-inflammatory therapy. Autologous describes the fact that it is taken from the patient themselves; serum describes the component of the blood that is used to prepare the drop. It was first reported to improve dry eye symptoms and signs in 1984, but there are now a number of reports supporting its beneficial effect in Sjögren’s disease. Most often prepared as a 20% topical solution, autologous serum must be prepared by removing blood from the patient’s vein and spinning down the clotted cells to isolate the liquid serum which is then diluted in artificial tears solution into small vials. It is not specifically approved by the FDA. Autologous serum contains fibronectin, vitamin A, cytokines, and growth factors, as well as anti-inflammatory substances, such as interleukin receptor antagonists and inhibitors of matrix metalloproteinases. It is not clear which of these components is most helpful, but significant improvement in symptoms, tear break up time, and surface staining have been reported.

The disadvantages of the use of autologous serum include the issue that it must be prepared by the eye care practitioner under well controlled conditions or by a compounding pharmacy, as well as the need to refrigerate the drops. There is a potential risk of infection if contamination of the solution occurs. The stability of frozen autologous serum has been verified for up to 3 months.

Typically, the serum is applied topically four times daily, and this can be done in conjunction with other therapy including topical lubricants, topical cyclosporine, or oral tear stimulants. The serum does not work well with contact lens wear.

This option may not work for every Sjögren’s patient and thus one will need to find an ophthalmologist or optometrist that is familiar with Serum Tears to accurately gauge the benefits.

-Gary Foulks, MD, FACS

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Ask the Expert, Serum Tears

Ask the Expert: Plaquenil and Sjögren’s

Posted on Mon, May 23, 2016

Question_and_Answer-1.jpgWhat is Plaquenil and what are its benefits for Sjögren’s patients?

Plaquenil (hydroxychloroquine) is a medication that has been used for many years to help musculoskeletal symptoms and fatigue in patients with autoimmune conditions such as rheumatoid arthritis, lupus and Sjögren’s. While there is good clinical evidence demonstrating the drug’s efficacy in rheumatoid arthritis and lupus, there are very few studies looking at hydroxychloroquine as a treatment for Sjögren’s. The studies that do exist show mixed results (some show benefit and some show no benefit) in whether or not the drug is effective in helping with pain, fatigue, dry eyes or dry mouth.

Nonetheless, despite the lack of clinical studies, rheumatologists feel that hydroxychloroquine may have a potential beneficial effect in helping patients with symptoms of fatigue and achiness, which are common complaints in patients with Sjögren’s.

TMS.pngHow the drug works is unclear, but recent research has pointed to an inhibitory effect on toll-like receptors that are proteins involved with inflammation. The good news is that hydroxychloroquine targets the immune system without causing an increase in the risk of infection or cancer that can be seen with other immunosuppressant medications. The typical dose for hydroxychloroquine is 200-400mg per day and is based on a person’s body weight (or if you are overweight, your ideal body weight). While hydroxychloroquine is considered a relatively safe medication, like all medications there are potential risks. These include body rashes that often will itch. The rash typically occurs in the first 6 weeks and is usually mild. In general, the rash will resolve within 2 weeks after stopping the drug. A more severe rash affecting larger areas of the body may occur but is not common. If this type of rash occurs, other medications such as anti-histamines and steroids may be required to help with symptoms.

Over time, hydroxychloroquine may uncommonly have an adverse effect on the retina that can lead to permanent visual damage if not picked up early. In order to protect the eyes, a baseline exam is recommended be- fore starting the drug if you are color blind, have prior retinal problems or have never had a dilated exam (checking color vision is one way the doctor monitors for early damage) or within the first 6-12 months if you have a history of healthy eyes and a recent retinal examination. After the baseline exam, it is recommended that patients get a dilated exam at the minimum of once per year. Retinal problems are more likely to occur after 5 years of use. Newer technologies are available (OCT-optical coherence tomography) that can pick up early changes. If early changes are found on exam, it would be uncommon to have progression of eye toxicity or visual changes.

Other potential side effects include but are not limited to nausea, changes in mood, muscle weakness, skin pigmentation and anemia. While the drug may be used during pregnancy, the potential benefits and risks should be discussed with your doctor.

In summary, if you have Sjögren’s, hydroxychloroquine may be an option to help your symptoms. Because there are other more effective therapies available to treat dry eyes and dry mouth, it is typically prescribed to help musculoskeletal pain and fatigue. Be patient, as the drug may take up to 6 months to see a beneficial effect.

by Scott Zashin, MD Internist & Rheumatologist in Dallas, TX

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Plaquenil, Dry Eyes, Sjogren's, Fatigue, Treatment, coping with sjogren's, Immunosuppressant, Ask the Expert

Ask the Eye Doctor: Why do my dry eyes hurt in the morning?

Posted on Wed, Sep 30, 2015

Q) Why do dry eyes feel awful in the morning when I first wake up, especially if I don’t use an eye lubricant at night?

Dr. Stephen Cohen

A) There are certain conditions that can get worse during the night with the eye in a closed state. For example, if you have blepharitis, which is caused by a common skin bacteria called “staph epidermidis,” the waste products of the staph are very irritating. But with your eye closed that staph toxin is lying there all night. If I have a patient who wakes up with really irritated eyes, one of the first things I want to look at is untreated blepharitis.

Another possible cause is called “recurrent corneal erosion.” Think about pulling a scab off all the time. It starts to heal and you pull the scab off. If the surface of the eye gets irritated through dryness and adherence to the back of the lid, or through an injury, that tissue needs to heal. The good news is it heals very quickly. The bad news is it hurts a lot as I’m sure you’ve found. So it heals quickly but it doesn’t necessarily anchor itself. That thin, outer layer of the cornea doesn’t anchor itself to the eye very fast, so you run the risk of re- irritating your eye even after you are feeling better. And when you do that over-and-over, it is called “recurrent corneal erosion.” You are basically tearing off the outer layer of the front of your eye. Classic sign is you wake up, you open your eyes and it hurts. Using ointments at night helps. Using an antibiotic ointment would help if you have blepharitis as well because it would treat that and give your eye a little more coating.

Dry Eye Tip!
If you have severe dry eyes and trouble opening your eyes in the morning because your lid is sticking, try to keep your eyes closed when you wake up and use the heels of your hands to gently massage your lids. What this will do is break any of those adhesions that may be there and it stimulates a little tear production so that you can actually open up your eye safely. But if you wake up and open up your eyes right away, you run the risk of – ouch – pulling that adhesion off, again, like pulling a scab off of a wound.

-Stephen Cohen, OD from his talk on Dry Eye at the SSF National Patient Conference

Click Here to View Audio CDs from Past  SSF National Patient Conferences

Topics: Dry Eyes, Sjogren's, Joint Pain, Fatigue, Treatment, Blepharitis

Natural Herbs & Spices That Alleviate Dry Eye Symptoms

Posted on Fri, Aug 28, 2015

spices-1Could alleviating dry eye pain be as simple as spicing up your life a little bit? (No, don’t cue Victoria Beckham- we mean that in a literal sense!) There are plenty of natural herbs and spices that are full of dry eye fighting antioxidants. In fact, you might even find dry eye relief in your own spice cabinet! Intrigued yet? We thought so. Behold, some of the best natural herbs and spices to help prevent your peepers from drying out:

Turmeric
This wonder spice was a hit with our dry eye prone friends. Sometimes known as curcumin, turmeric is an Asian spice that is protective against a number of diseases (including dry eye!). However, there’s a catch: turmeric is not always easily absorbed. Experiment with this natural anti-inflammatory anyway- it may help reduce oxidative stress. (P.S. One of our Facebook friends shared her go-to hot beverage for dry eyes a few months back. Try Janice’s recipe: Warm up some almond milk, sprinkle a tsp of turmeric, ½ tsp cinnamon and 1/8 tsp cloves. Finish with a dollop of raw honey. Whisk together and voila, an inventive {and delicious} way to incorporate turmeric into your diet!)

Paprika
Paprika has an extremely high concentration of vitamin A, which is great for warding off dry eye symptoms. Other good news about paprika, it’s an extremely versatile ingredient- and just about everyone has it sitting in the spice cabinet. Try using paprika next time you cook. It’s awesome for boosting flavor- and nutrition! Get a dose of paprika by sprinkling it on potato salads, fish, chicken and eggs. 

Bilberry
You may have already heard that bilberry, a shrub closely related to the blueberry, is great for overall eye health and retinal diseases like macular degeneration. Well, it’s also particularly beneficial for dry, itchy eyes. Extracts from the bilberry fruit help to improve blood circulation, oxygen supply and tear gland function. Additionally, bilberries contain vitamin P and citrin, both of which help to decrease swelling and inflammation in the body; a common dry eye trigger. Experiment with bilberry supplements or tea made from bilberry leaves. However, be careful not to over indulge. Ingest no more than 220 mg of bilberry per day.

Mint
Next time you’re tempted to rub those itchy, stinging eyes, try a spearmint eyewash instead. Simply boil about 10-12 leaves of spearmint in some water. Wait until the solution cools (at least 20 minutes!) and then use a clean face cloth to apply the wash to your eyes. Menthol, the active ingredient in mint, actually stimulates tear production and will leave your eyes feeling energized and refreshed. Plus, it smells amazing! Win-win.

Chamomile
Chamomile is known for its cooling and anti-inflammatory properties. It soothes tired eyes and can help restore moisture. Another bonus? Drinking chamomile tea makes you feel sleepy and prepares you for rest, so it’s the perfect drink to sip on after a long day.

So, there you have it; options for natural dry eye relief. Of course, the above mentioned are merely a few of the wondrous herbs and spices that can alleviate dry eye pain.  Other potential dry eye fighters include thyme, fennel, marigold and calendula.

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This article is a reprint from AllAboutDryEye.com, which is sponsored by TearLab Corporation and first shown by the SSF in “The Moisture Seekers,” SSF’s patient newsletter.

Topics: Sicca, Dry Eyes, Sjogren's, Treatment

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