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

Sjögren’s and Punctal Plugs: Pros and Cons

Punctal plugs have both pros and cons. The pros are that they are a safe method to retain tears on the ocular surface and have value in relieving symptoms when tear production is borderline or if the duration of applied tear substitutes needs to be prolonged. They are helpful as adjunctive treatment in the management of dry eye disease.

The cons are that when applied in the presence of inflammation that can occur as part of dry eye disease, they may aggravate symptoms by allowing the inflamed tear to have prolonged contact with the surface of the eye. Therefore, my recommendation is to treat the underlying inflammation before placing the plugs. Another con is that they can fall out and need frequent replacement. Rarely, the plug can provoke a localized inflammatory reaction in the tissue of the eyelid and produce a granuloma at the opening of the tear drainage puncta.

On balance, punctal plugs are a useful adjunctive treatment for dry eye disease but should be used in conjunction with other therapies to control inflammation.

By Gary Foulks, MD

Sjögren’s, More Than Dry Mouth & Dry Eyes

One of the main difficulties with diagnosing Sjögren’s is that symptoms vary from person to person. Often patients will visit their dentist for dry mouth or excessive tooth decay and then their primary physician for joint pain and fatigue. This makes it difficult for both the patient and physician to put the symptoms together.

As we continue on the road of achieving our breakthrough goal of shortening the time to diagnose Sjögren’s by 50% in 5 years, it is important to first identify the main reasons why people go to the doctor and seek a diagnosis.

In a recent survey of over 4,000 Sjögren’s patients, it was discovered that the four main reasons patients sought a diagnosis (in order) were:

• Dry eyes
• Dry mouth
• Fatigue
• Joint pain

While we know Sjögren’s is much more than just the hallmark symptoms of dry eyes and dry mouth, it is important to note that they are the two top symptoms that caused patients to seek a diagnosis.

What is also important to note is that in the same survey, dry eyes and dry mouth were ranked #1 and #2 for symptoms patients currently still experience after diagnosis:

Common Symptoms Experienced by Patients Post Diagnosis were:

• 92% Dry eyes
• 91% Dry mouth
• 86% Sleep disruption

This is why, it is imperative that we reach out to dentists, dental hygienists, ophthalmogists, optometrists and rheumatologists with information about Sjögren’s and its hallmark symptoms.These are the physicians who are on the front lines and can help speed up a  diagnosis of Sjögren’s.

So remember, the Foundation offers “Dry Eyes,” “Dry Mouth” and “What is Sjögren’s Syndrome?” brochures to all medical offices, free of charge. We hope you will consider taking some of them to your next doctor visit! Sign up to be an Awareness Ambassador or help us spread the word about Sjögren’s by distributing brochures!

Just call our office and request some brochures and we will mail them to you. Or have your doctor’s office contact us or sign-up online for brochures. Visit www.sjogrens.org or call us at 800-475-6473.

Vasculitis in Sjögren’s Syndrome

Vasculitis is considered to be a significant extraglandular manifestation of Sjögren’s syndrome (SS). While a specific type of vasculitis has not been universally associated with SS, several sub-types of vasculitis occur with considerable frequency in SS. These vasculitic sub-types have prognostic and therapeutic implications. This discussion is limited to the association of vasculitis with primary SS. Vasculitis, while not infrequently observed in secondary SS, often occurs via its association with the associated rheumatic disease (i.e. SLE).

More than 50 years ago, classification of vasculitic disorders was based on the caliber of vessels involved, but since that time, investigators discovered the relationship between immunological processes and specific kinds of vasculitis, and this has changed our way of thinking about and defining sub-types of vasculitis. However, terminology can remain in use long after its effectiveness, resulting in variable reports of vasculitis complicating SS.

The majority of vasculitic syndromes described in SS involve small vessels. A list of terms used to describe vasculitic syndromes complicating primary SS is shown in Table 1.

Table 1 Small and Medium Vessel Vasculitic Syndromes Associated with SS

Small vessel

Benign hyperglobulinemic purpura of Waldenstrom

Capillaritis

Cryoglobulinemic vasculitis

Hypergammaglobulinemic purpura (non-inflammatory)

Leukocytoclastic angiitis

Lymphocytic vasculitis

Mononuclear inflammatory vascular disease

Neutrophil inflammatory vascular disease

Palpable purpura

Schaumberg’s disease

Serum sickness vasculitis

Urticarial vasculitis

Venulitis

Medium Vessel

Granulomatous arteritis

Mononeuritis multiplex

Necrotizing vasculitis

Systemic necrotizing vasculitis

Management of vasculitis associated with SS

Hyperglobulinemic purpura may be managed using symptomatic therapy. Avoidance of tight fitting elastic on the lower extremities, elimination of long periods of standing and elevation of one’s legs while sitting are all helpful in reducing elevated hydrostatic pressure. Judicious use of topical corticosteroids (i.e. 1% hydrocortisone and others) may relieve itching as may the newer, non-sedating antihistamines which may be less drying than the traditional antihistamines. Mild to moderate cutaneous vasculitis may respond to a variety of agents including NSAIDs, colchicine, dapsone, hydroxychloroquine and methotrexate. Short courses of oral corticosteroid (prednisone) may be required.

The onset of numbness or other changes in sensation, pain and/or weakness of the extremities may be indicative of a more severe vasculitis involving the peripheral nerves and or muscles. In some cases, medium caliber vessels may be involved and other organs or systems may be affected as well, including the kidney, GI tract and central nervous system. These more severe forms of vasculitis require treatment with moderate to high doses of corticosteroids and immunosuppressive agents such as azathioprine and cyclophosphamide. Intravenous immunoglobulin has been successful in patients with peripheral neuropathy secondary to vasculitis. Rituximab has recently demonstrated efficacy for systemic necrotizing vasculitis and is under investigation for the treatment of extraglandular manifestations of SS. B cell depletion (rituximab therapy) is an attractive option for the management of SS particularly when vasculitis is associated with responsive forms of B cell NHL.

Information on Vasculitis in Sjögren’s Syndrome excerpted from an article by Steven C. Carsons, MD, Winthrop University Hospital, Vol. 28, Issue 2, The Moisture Seekers, published by the Sjögren’s Syndrome Foundation.

Sjögren’s Research: A Promising Future

Applications for the Sjögren’s Syndrome Foundation’s 2012 Research Grants are in, and the news is great!

We are thrilled to announce that the number of applications has nearly doubled from last year and the quality of candidates with exciting and creative proposals exceeds all previous years.

Having so many researches take an interest in starting or continuing their careers in Sjögren’s gives hope to finding more treatment options and a cure, but also signifies the increased value that the medical community is finding in conducting Sjögren’s research.

Thanks to the generosity of our members, supporters and corporate partners, we are able to continue to expand our research program, but we wish we could fund all of the promising applicants.  It is always difficult to turn away a talented researcher due to funds since our hope is to encourage them in pursuing a career in Sjögren’s research.     

These talented applicants are the reason we continue to increase the number of awareness events and fundraising activities to carry out our mission of not only educating and creating awareness of Sjögren’s but also encouraging vital research of this debilitating disease.  

Applications are currently being reviewed by the SSF Research Review Committee, composed of experts in Sjögren’s, and the awardees will be announced later this spring. The challenge this year – is that we are going to have to turn away more applicants than ever before!  Turning away the chance of having a worthwhile Sjögren’s project not researched!

In the meantime, please take a moment to read about the 2011 Research Grantees and their abstracts or view the upcoming SSF Events Calendar to see how you can participate.

We also hope you will consider donating to our research campaign. With more donations for research – we will be able to fund more research this year.  Please help!

Creating a Breakthrough Goal: What would you do, if you knew you couldn't fail?

One common difficulty about living with an invisible illness that the Foundation often hears from Sjogren's patients is not feeling like you are being heard.

With a presentation titled, "Can you hear me now?" Steven Taylor, SSF CEO, Lynn Petruzzi, RN, Board of Directors- Chairman, and Ken Economou, Board of Directors member, presented the Foundation's new breakthrough goal “50 in 5” at the National Health Council’s 25th Annual Voluntary Leadership Conference.

The annual conference that took place early in February is centered on health organizations sharing issues concerned to the patient advocacy community. 

Taylor presented to over 30 CEO’s and volunteers from national voluntary health organizations (such as the American Heart Association, Lance Armstrong Foundation and American Diabetes Association).  Taylor, Petruzzi and Economou were able to share:

• What is Sjögren’s
• Who is the SSF
• Why did the SSF decide to launch a breakthrough goal (BTG)
• How did the SSF pick “50 in 5” as the goal

Taylor, Petruzzi and Economou illustrated the step by step process that the SSF took to develop “50 in 5".  They reviewed how the process began in 2010 with the Board of Directors recognizing the need for a breakthrough goal and the establishment of a task force to determine the new goal.   Once approved, the setting of short and long term priorities needed to make the goal successful began.

When presenting how the goal itself was established, Taylor stressed that the starting point was asking the question, “What would do you, if you knew you could not fail?”  Two years later, the SSF proudly announced a loud and clear goal of “50 in 5” to change the face of Sjögren’s.

The more we share about Sjögren’s, the more we will be heard. Don't forget to take time and share about Sjögren’s with the people in your life.  Together we can make Sjögren's  a household name- "50 in 5" here we come!

Download the Sjögren’s Syndrome Self-Help Booklet

This is the third edition of this helpful publication, upgraded to include the latest tips, suggestions and ideas for everyday life.

The Foundation understands the challenges of living with Sjogren's and that is why we continue to focus on providing resources that will help patients live with their disease.

We have over 75 support groups in the United States, offer 3 patient conferences a year and continue to support life-changing research!

    Tips include:

• Dry Eyes & Mouth
• Surgery                           
• Peripheral Neuropathy
• Wellness & Diet
• And much more!

                                                             

We LOVE our Friends!

Happy Valentine’s Day!

Today, the SSF wants to Sjö you our appreciation by offering everyone the member price on all orders placed by calling the office at 1-800-475-6473.

Take a moment to look over our resource sheets of books and Cds offered through the SSF store.

Click Here to view some of the SSF resources available for purchase.

A Great Kick-off for an Aggressive Goal!

Last week’s launch of the 5-Year Breakthrough Goal was a huge success!

In our first post we mentioned ways that you could help and many of you have already signed up to become an Awareness Ambassadors or help in one of our upcoming awareness events. 

In addition to informing members and friends of the Sjögren’s Syndrome Foundation, the SSF sent out a national press release that was picked up by 130 news outlets, reaching over 15 million viewers.  

Click Here to read the SSF press release.

Now we want to hear from you!

Let us know some of your ideas about how we can increase awareness of Sjogren's. 

SSF Launches 5- Year Breakthrough Goal!

After months of behind the scenes planning, the Sjögren’s Syndrome Foundation proudly announced the new 5- year breakthrough goal in the January issue of The Moisture Seekers. Our goal:

 “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

With an aggressive timeline of goals to accomplish ahead, we have created this blog to invite you to be a part of this journey with us.

We want to keep you informed of the progress we make, the hurdles we meet and how we overcome them on our way to shorting the time of diagnosis by 2012. Most importantly, we will let you know ways where you and your community can help! We will also be posting general support information for patients and their families, including updates about new resources, educational programs, coping information from physicians and much more.

As many of you know, the average time from the onset of symptoms to a diagnosis is over 5 years and we all agree that this is too long!  It will take an army to achieve our goal, but just imagine if we all band together to create a change.

Creating a future where physicians can start helping patients earlier, improve their quality of life and provide them with proper management and treatment guidelines. Imagine a future where Sjögren’s is taken more seriously by the medical community and general public, helping all patients.

 To find out more about our 5 year breakthrough goal, read the three main action items below:

1. Increasing public awareness
   Increasing awareness among the general public is not new to the SSF; however, with our new breakthrough goal, we will be focusing on more targeted communications, building relationships with the media and utilizing our Awareness Ambassadors (volunteers who help the SSF distribute awareness materials in their communities) to distribute educational information.
   
   
2. Increasing involvement from our friends and partners
   Increasing involvement from our friends and partners is going to be critical for us to achieve this breakthrough goal.  We need to partner with our various stakeholders (pharmaceutical partners, corporate partners and friends/family) to help us spread the word about Sjögren’s.  We will be asking them all to step up and help us fundraise as well as raise awareness.  With their help, we will be making a concerted effort at media outreach, healthcare professional awareness and education as well as increasing our resources for patients.  “Every partner and friend can assist in some way, and we will be calling upon everyone to step up and help us,” said Steven Taylor.
   
   
3. Increasing education and awareness among healthcare professionals
   Increasing education and awareness among healthcare professionals is something that current patients know is urgently needed.  Trying to get physicians and dentists to understand Sjögren’s is a major challenge, and the SSF is determined to focus on this very problem.  By increasing our visibility at professional conferences, by speaking at professional associations and by visiting one-on-one with physicians – we plan to start to change the face of Sjögren’s in the medical community.  “We are determined to have Sjögren’s at the top of their mind when they hear a patient complaining of our hallmark symptoms of dry mouth, dry eye, fatigue or joint pain,” said Lynn Petruzzi, SSF Board Chairperson.

 

con·quer (Verb)

Overcome and take control of (a place or people) by use of military force. Successfully overcome (a problem or weakness).

 

Together, we can conquer Sjögren’s!