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Industry Watch

 

Evoxac® (cevimeline)

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Ranbaxy Pharmaceuticals, Inc. (RPI) has launched a generic version of cevimeline, the trade name for which is Evoxac®. The genericwill be marketed in the U.S. under an agreement with Daiichi Sankyo, Inc. RPI is based in Jacksonville, Florida. Cevimeline activates the M3 receptors of the parasympathetic nervous system and leads to increased saliva production. It was FDAapproved in January 2000 for dry mouth, which marked the second therapeutic that has been FDA-approved for a major complication of Sjögren’s.

Actemra® (tocilizumab)

Actemra® (tocilizumab) was approved in October 2012 by the FDA for use in rheumatoid arthritis and clinical trials will be launched in Sjoören’s this year. Actemra® is made by Genentech, a member of the Roche group. An interleukin-6 (IL-6) receptor inhibitor, the drug already was approved for use in systemic juvenile idiopathic arthritis. Jacques-Eric Gottenberg,
MD, of Strasbourg, France launched a study this year to investigate the efficacy of Actemra® in Sjögren’s patients.

Rituxan® (rituximab)

The most recent company to work on developing a generic version of Rituxan® (rituximab) has run into delays. The South Korean-based company Samsung Electronics has temporarily ceased clinical development of its biosimilar drug. Earlier, Teva Pharmaceutical of Israel also halted development of a biosimilar for the same blockbuster drug. While exact reasons were not provided in either case, experts are on record as saying that the development of a biosimilar appears to be a trickier prospect than expected. Loss of patent protections are looming in both Europe and the U.S. for Rituxan®, which is a B cell-targeted biologic (specifically a chimeric anti-CD20 monoclonal antibody) produced in partnership by Biogen Idec and Genentech/Roche. It is FDA-approved for use in non-Hodgkin’s lymphoma, RA and most recently for Wegener’s granulomatosis and is currently undergoing clinical trials in Sjögren’s.

 

***This was first printed in the Fall 2012 Sjögren's Quarterly, the SSF medical and scientific newsletter that is distributed free-of-charge to thousands of healthcare providers in rheumatology, ophthalmology, optometry, dentistry and research.

Click Here for an SQ sign up form that you can take to your doctor and make sure they're informed about the latest Sjögren's information!

March 30th is National Doctor's Day

 

This year, show your doctors your appreciation by helping them stay updated on the latest Sjögren's information!
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Purchase "The Sjögren's Book, Fourth Edition" for a physician (or physicians) in your life and the SSF will mail the book directly to them with a special card letting them know that it was purchased by you in honor of National Doctor's Day!

With this purchase, the SSF will give your physician a complimentary subscription to our professional newsletter, Sjögren's Quarterly, as well as brochures for their office.

With Sjögren's Awareness Month right around the corner in April, what
better way to show your doctor appreciation than informing their entire
staff about Sjögren's and raising awareness in your community!

Click Here for the SSF National Doctor's Day- I Appreciate My Doctor Order Form

Cost= $32.00

How to order:

  • Call 1-800-475-6473
  • Fax the form to 301-530-4415
  • Mail the form to the SSF Office: 6707 Democracy Blvd., STE 325 Bethesda, MD 20817


Our Top 5 Tips for Raynaud's Syndrome

 

Raynaud’s Syndrome occurs in approximately 15-30% of patients with Sjögren’s.

Raynaud’s Syndrome (sometimes called Raynaud’s phenomenon) is defined as repeated episodes of color changes in the fingers and/or toes with exposure to cold temperatures or during episodes of emotional stress. The color changes are due to a spasm of the blood vessels that feed the fingers and toes. The digits typically turn very white, then can take on a bluish color with prolonged exposure to the cold, and finally can turn very red as blood flow resumes.

Sjogren's Syndrome Foundation's Top 5 Tips to control your Raynaud's Syndrome:raynauds phenom

  1. If you have access to water when a flare starts, run warm water over your fingers and toes until skin color returns to normal.

  2. Do not smoke — this constricts the blood vessels that feed the hands and feet.

  3. Moisturize your hands and feet every day to prevent your skin from cracking.

  4. When your hands or feet start to feel cold, wiggle your fingers and toes, move your arms and legs around to get blood flowing, or put your hands under your armpits to warm them up.

  5. Talk to your doctor about your symptoms. Several medications can be used to help the vessels stay dilated, including a class of blood pressure medications called calcium channel blockers. Some medicines, such as beta blockers used for high blood pressure, may make Raynaud’s worse.

These Tips are from the SSF Patient Education Sheet: Raynaud's Syndrome- Click here to view the full sheet

Click Here to see all of the SSF Patient Education Sheets

  Click Here to Become an SSF Member

Shannon Boxx Steps Up for Sjogren's Awareness

 

The Sjögren's Syndrome Foundation is thrilled to welcome Shannon Boxx as the 2013 Honorary Walkabout Chairperson!

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Shannon Boxx, member of the U.S. National Women’s Soccer Team and Olympic gold medalist, has been an inspiring Sjögren’s advocate since she announced she has Sjögren’s this past year and was connected to the Foundation by Athletes for Hope.  Shannon is now taking Sjögren’s awareness to communities around the United States by stepping up as the SSF Honorary Walkabout Chairperson!

Click here to learn more about SSF Walkabouts and an event calendar

If there is already a Walkabout in your area and you would like to learn more about it or if you are motivated and want to start an event in your area- please contact Ben Basloe at 301-530-4420 x207 or by email at bbasloe@sjogrens.org to learn how you can get involved!

Want to learn more about Shannon's journey with Sjögren's? Listen to her interview with American Airlines and US Airways about being diagnosed with Sjögren's and why raising awareness is so important to her by clicking here.

We hope you will join Shannon and step up for Sjögren's in your community by participating in a SSF Walkabout!


We LOVE our Friends!

 

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Today the SSF wants to Sjö you how much we appreciate all the support by giving away complimentary registrations to two people for the 2013 SSF National Patient Conference "Discover the Possibilities" April 12-13, 2013 at the Hyatt Regency Bethesda!

Due to the overwhelming amount of interest, we have decided to giveaway 3 Free Conference Registrations.

Congratulations to our winners: Donna, Mary & Shawn. The winners have all been notified personally by the SSF and thank you all for the support!

Entering is easy! (this givaway is now closed)

To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2013. The Foundation will privately email the two winners on February 15, 2013. Winners will be picked at random and the registrations are non transferable. Please email us at tms@sjogrens.org with any questions.

Conference Details:
Hyatt Regency Bethesda
One Bethesda Metro Center
Bethesda, Maryland 20814

   describe the imagePresentation topics will include:

  Overview of Sjögren’s Syndrome
  Sex and Living with Sjögren’s
  Biologic Therapies and Sjögren’s
  Understanding Blood Changes and Test Results
  Caregiver/Patient Perspective on Sjögren’s
  Neurological Complications and Sjögren’s
  Dry Eye and Sjögren’s
  Dry Mouth and Sjögren’s
  Podiatry Issues and Sjögren’s
  Hope for the Future: Research Update

 

When I was diagnosed with Sjogren's, my first thought was…

 

"What the heck is that?"
     -Iris

"Well, that makes a lot of sense but now what?"
     -Shelly

"I'm a man, I cannot have this."
      -Joe

“What? That’s all I need on top of Fibromyalgia (FMS).”
      -Donna

“I told you so!”
       -Sarah

"I remember seeing that disease in nursing school a long time ago."
      -Beverly

"Thank God for the diagnosis!"
      -Renee

"That explains a lot"
     -Karen

“WHAT IS THAT?”
      -Nancy

“How is this going to affect my life?”
      -Melaca

“I have what?”
      -Abby

 

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Faces of Sjögren's- You are not alone!

As the Foundation announced in the January 2013 issue of The Moisture Seekers, we've added a new section to our website: Faces of Sjögren's.

With the launch of the SSF 5-Year Breakthrough Goal, 50in5: “To shorten the time to diagnose Sjögren’s by 50% in 5 years” we are also hoping to change how Sjögren’s is understood.

On this new web page, patients share their journey with Sjögren's starting from their first thought after being diagnosed to where they are currently. Now that you've read their first thought, find out what happens next and read their full story on our website.

 Click Here to see all of our Faces of Sjögren's stories

 

Patients Sharing with Patients: Makeup and Skin Care Tips

 

Sjögren's is a systemic disease with its symptoms felt throughout the entire body. While dry skin, dry nails and dry hair are not among the serious manifestations of Sjogren's, they are prevalent in many patients’ lives.

Learning to live with Sjögren's is learning what your body's new normal is- including what type of daily skin products and makeup one uses. 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!

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  • What makeup and skin care products have you found that work well with your Sjögren's?

  • What type of shampoo would you recommend?

  • As a male patient, what aftershave or face moisturizer do you use?

  • Is there a nail polish that works best for you?

Just as one type of eye drop may work well for one patient but not another, you will need to discover what works best for your body.

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

Brain Fog and Sjogren's

 

What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is Brain foginappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.

 What YOU can do about Brain Fog:

tear Manage your lifestyle to optimize your health and sense of well being.

tear Develop a close working relationship with your doctor(s):

  • Always report changes in cognition/memory and mood (depression, anxiety).
  • Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients
  • over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
  • Inquire about your hormonal status, thyroid function, and blood pressure.

tear Additional actions:

  • Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor.
  • Minimize stress and anxiety:
    • Set realistic expectations
    • Plan ahead
    • Take breaks throughout the day
    • Learn relaxation exercises and practice them at regular intervals
    • Balance work and leisure
    • Let yourself laugh
    • Talk about feelings
  • Limit multi-tasking and focus on one task at a time.
  • Reduce caffeine and alcohol.
  • Manage effectively musculoskeletal and joint pain.
  • Exercise regularly. Adequate physical exercise enhances cognition/memory.
  • Train the Brain! “If you don’t use it, you will lose it.”
  • Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally
    stimulating activities and establish new friendships and relationships.
  • Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function.
  • Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s, not the absence of any disease!

tear Suggested reading: The Memory Bible, by Gary Small, MD, Director of the UCLA Center on Aging, available from the Sjögren’s Syndrome Foundation.

***This information is from the Sjogren's Syndrome Foundation's "Patient Education Sheet: Brain Fog." Click Here to view more Patient Education Sheets from the SSF.

We encourage you to comment below and share what you've found helpful when dealing with Brain Fog & Sjogren's.

Venus Williams Stands up for Sjogren's Awareness!

 

On July 23rd, 2012 the Sjögren’s Syndrome Foundation joined with other Sjögren’s groups around the world to celebrate World Sjögren’s DayWorld Sjögren’s Day and got a BIG boost from Venus Williams, professional tennis player and Olympic Gold Medalist as well as fellow Sjogren’s patient

A year after helping to increase awareness for Sjogren’s when she publicly announced her diagnosis, Venus once again stood up for Sjögren’s awareness  when she carried the Olympic torch through the streets of London on, what more appropriate day, World Sjögren’s Day. (July 23rd)

Here is an excerpt from her Facebook page:

Venus“Today was an amazing day. I carried the Olympic flame right through Wimbledon! I truly felt the Olympic spirit, participation, giving your best and bringing people together no matter what their background of differences. This Olympics is very special to me having battled through an auto immune disease in the last year. It was my dream come true to qualify for the Olympics. To carry the torch today on World Sjögren’s day was so fitting. My run with the flame today represented triumph for everyone battling an auto immune disease. I'm planning on enjoying every day at the Olympics, I won't take even one for granted!”

As you know, World Sjögren’s Day commemorates the birthday of Henrik Sjögren, who first identified Sjögren’s in 1933. This past summer, we asked members and supporters to use World Sjögren’s Day as a reason to talk about Sjögren’s. Initially, sharing can be a scary thought but you will never know what support is out there if you don’t. Awareness can be reached one person at a time and we encourage everyone to find reasons in your own life to talk about Sjögren’s.

Venus went on to win the Women’s Doubles Olympic Tennis Gold Medal with her sister, Serena Williams. The Foundation wants to not only thank Venus for stepping up for Sjögren’s awareness but also for being inspiration to all Sjögren’s patients.

Breaking the Barriers: 4.7

 

describe the imageThe Sjögren’s Syndrome Foundation’s 5-Year Breakthrough Goal:“To shorten the time to diagnose Sjögren’s by 50% in 5 years,” is the largest initiative that the SSF has ever undertaken. This is why we are working with an outside marketing research firm to help us gather information needed to reach our goal, track our progress and tell us how long it currently is taking patients to be diagnosed with Sjögren’s.

This summer, the SSF and our marketing research firm surveyed newly diagnosed Sjögren’s patients from 2011, and of those patients surveyed, it was determined that it currently takes patients on average 4.7 years to be diagnosed with Sjögren’s. While 4.7 years is a great initial improvement from all past studies, we probably all can agree that it is still too long to wait for an accurate diagnosis!

In addition to the length of time to reach diagnosis, the SSF also was able to gather valuable data about the average age of those being diagnosed, which medical professionals are diagnosing Sjögren’s, which symptoms are causing patients to seek a diagnosis and what symptoms patients are currently experiencing. This new information will help the SSF in highlighting gaps in patients’ medical care as well as where we may be able to capture potential patients before they suffer for nearly 5 years. We then can direct our marketing efforts toward those symptoms and medical professionals.

So, now, the SSF can be proud that we have been able to decrease the time for diagnosis from nearly 8 years back in 2007 to now 4.7 years. This baseline will give us our starting point to reach our goal of shortening the time to diagnose Sjögren’s by 50% over the next 5 years. We hope that by 2017, we can say that it only takes a little over 2 years to obtain a proper diagnosis!

We can do this – but we still need more help! We thank those who have been participating in our awareness initiatives and coming out to fundraising events as well as those who support the SSF. However, there are more ways to get connected and we hope you will all step up and help us. Learn more about the SSF and how you can assist us by visiting www.sjogrens.org or calling the SSF office at 800-475-6473.

*** This was first published in the October issue of The Moisture Seekers, our patient newsletter for SSF members.

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