Monday, August 10, 2015

Robert Fox, MD, PhD: 2015 International Symposium on Sjogren's Syndrome


Back in May, I wrote a post in which I commented upon the upcoming 2015 International Symposium on Sjogren's Syndrome:
Sometimes when I'm having a day that's less than stellar autoimmune-wise, it's easy for me to descend into a seriously grumpy mood. This is due to lots of reasons: frustration with my body; frustration with my disease; and always frustration that there is not a cure for Sjogren's Syndrome and autoimmune diseases. Inevitably I fixate on the latter cause, since it's much easier to put blame and anger on a faceless scientific community that I assume must be sitting on their duffs not doing much of anything about our disease. 
Which is not accurate. Seriously. While it is true that other diseases garner more attention and research dollars, many knowledgeable and dedicated scientists and physicians from all around the globe are working toward better treatment and hopefully a cure for Sjogren's syndrome. 
Case in point: This week in Bergen, Norway, physicians, researchers, and Sjogren's patients are participating in an international gathering to share information, research, and experiences. This truly is an international event............I am assuming that some kind of summary of conference presentations and abstracts will be made public, hopefully in an upcoming Sjogren's Syndrome Foundation publication such as their Sjogren's Quarterly.
So I was pleased to receive a recent email from Dr. Sarah Schafer alerting me to Dr. Robert Fox's summary and discusssion of the symposium in a July 2015 piece in Medscape Rheumatology. Here's a sample: 
Advances in Understanding, Diagnosing, and Treating Sjogren Syndrome
Robert I. Fox, MD, PhD
July 31, 2015
Sjogren syndrome (SS) was named for Henrik Sjögren, a Swedish ophthalmologist who, in 1933, reported the clinical and histologic details of 19 women with xerostomia and keratoconjunctivitis in his doctoral dissertation. Of these patients, 12 had associated arthritis. His findings remained largely ignored until Bloch and colleagues "rediscovered" SS in 1956.[1] Since this early research, there has been debate over the clinical criteria for diagnosis, the optimal methods of diagnosis, and modalities of therapy. 
The first International Symposium on SS was held in 1986, organized by Drs Rolf Manthorpe and Peter Oxholm. Henrik Sjögren was supposed to attend, but unfortunately, last minute illness precluded us from meeting him. The symposium was attended by a few dozen faithful clinicians and investigators (myself included) from multiple disciplines, including oral medicine, ophthalmology, and hematology. 
The 13th International Symposium on SS was held in Bergen, Norway, on May 19-22, 2015, and was organized by Dr Roland Jonsson, who also participated in the first symposium. This year's meeting had several hundred delegates from four continents and presented more than 200 abstracts, with more details on the meeting's website.[2] One of the exciting features of this year's meeting was the "passing of the torch" to a new generation of clinicians and researchers by the original group of "old timers" (myself included). 
Some highlights from the original research presented include:
  • Agreement on consensus diagnostic criteria that will allow uniform diagnosis of patients;
  • Guidelines for evaluating efficacy of therapy that will be the basis of clinical trials, in particular a weighted scale that will be analogous to the American College of Rheumatology (ACR) ACR50 score for rheumatoid arthritis (RA);
  • Advances in methodology including parotid ultrasound and biomarkers that will provide noninvasive methods for diagnosis and determining prognosis and response to treatment;
  • Application of new pathogenetic tools to cohorts of SS patients including genome-wide association (GWA) studies that suggest important therapeutic targets;
  • Recognition that dynamic alterations beyond the genome play a role including alterations in DNA methylation profiles and microRNA transcription;
  • Translational studies to understand the high incidence of lymphoma and pathogenesis of extraglandular markers at the molecular level; and
  • Further advances in the complex pathways of cytokines and chemokines not only in blood samples but also in lacrimal and salivary secretions.
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Dr. Schafer's email also included her comments on the article, which were enormously helpful in deciphering Dr. Fox's information: 
Hot off the presses article by Robert Fox, MD, from Medscape, based on May 2015 International Symposium on Sjogren’s Syndrome. 
Of note: 
1.        ACR and AECG criteria being combined so uniform diagnostic criteria are agreed upon. .  My Comment:   These classification criteria are to ensure study populations are consistent.  This is necessary for research.   As with old criteria, they do not substitute for clinical judgment in treating Sjogren’s in individual cases in the clinical setting.  
2.       SS patients have significant increased risk of atherosclerotic heart disease.  This has been known to be true of RA for many years.     My comment:  This increases risk of dying from heart disease.   They should have looked at this long ago.  They make a big deal out of this issue with RA patients.  
3.       One reason Sjogren’s is not taken as seriously as it should be: 
          a.       Many of the sicker patients with extraglandular manifestations -such as lung disease, kidney disease, neuro disease, hemolytic anemia, etc-  are never diagnosed with Sjogren’s because the focus is on their severe and sometimes life threatening condition. When Sjogren’s is the underlying cause, it  should be diagnosed, and will help guide care.  These patients should have rheumatologists- to treat them for their other Sjogren’s disease manifestations. 
          b.      Many of the sicker patients are misdiagnosed as lupus or RA.   This actually happens a lot.  
4.       Parotid ultrasound and biomarkers in blood and saliva are promising but still to be worked out.   This is needed because there are many false positives and false negative blood tests for Sjogren’s antibodies, and the lip biopsy is cumbersome, and may take years to turn positive.  
5.       Rituximab is used widely in Europe for treating extraglandular manifestations.  
6.       “The greatest unmet need remains fatigue and cognitive dysfunction and will be the “Holy Grail” for the next decade of research..” 

Excellent. I especially agree with comment number six. Much appreciated, Dr. Schafer. 

4 comments:

Deborah Sabin said...

Thanks, Julia. Yesterday I read the new clinical guidelines for management of ocular symptoms in the latest Moisture Seekers. As always, I will encouage everyone to sign up for for your daily blog emails - when I get around to producing the newsletter for this month! So grateful you are doing this for the SS community. ;-)

Shara Bingham Mills said...

Good Summer to you and yours girl, I certainly hope that when they passed the torch they change their own energy. And the rats. Did you hear that scientists have been doing the labs with rats all wrong? After years they figured out that a female rats immune system is different than a males and for the last century, male rats are all they used in science!

Amy Junod said...

Thanks so much Julia for deciphering for us. (I really REALLY need it)
I'm hopeful by the new guidelines. I am happy for any indication that the medical community is pulling together. By the guidelines it makes me feel like there's more order to the team.

John Mano said...

My advice, take all these doctors, load them on a ship and sink it in the Pacific Ocean. Problem Solved.

I have had Sjogren's since 2007. I was the one to diagnose it from reading medical texts, not a doctor, in fact when I presented a rheumatologist with my symptoms, blood work and a text book on Sjogren's he dismissed it, saying " Men in your shape do not have Sjogren's" From that point on I began treating it myself, first by going online and purchasing medications overseas to help control it and having my GP run blood work to check for issues. Then I began reading about reversing it. I know for a fact the trigger that caused it was antibiotics, so I spent over 3 years following up on that. Luckily by this point science was coming around to being able to run DBA on fecal samples, so I started sending in samples and finding out what bacteria I had in me and what was normal. Anything that was abnormal I tried to fix, if it was too much I used antibiotics to bring it down, if too little I read online how to bring it up, took almost 2 years, but one day the saliva started to come back, then the dry eyes, constipation, neurological issues and brain fogs,even my lungs were working better. That was over a year ago, to this day nothing has come back. So like I say, sink the ship, but first make sure they are all on board. Do the same for yourself, you are an RN, and should be even better able to do this,don't crawl on your hands and knees for a pill to make youself feel a bit better today. FIX YOURSELF!

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