Beyond Ro and La, Current Criteria: New Early SJS Test available 2013

[quietdynamics]

Reading about this development, the consistent opinion is that Ro and La occur later in the disease process, although symptoms may present. I would have liked to read the comment by Dr. Fox, but sadly I cannot find it.

Sjogren's Syndrome: New Discovery by UB and Immco Makes Early Diagnosis A Reality for the First Time
The new diagnostic test will be available to physicians in early 2013
By Ellen Goldbaum
Release Date: December 12, 2012  http://www.buffalo.edu/news/releases/2012/12/13854.html

"BUFFALO, N.Y. -- Patients suffering from the painful autoimmune disease, Sjogren's Syndrome, will soon be able to be properly diagnosed much earlier, thanks to the discovery of novel antibodies by researchers at the University at Buffalo and Immco Diagnostics, Inc. The breakthrough, described in a paper in the December issue of Clinical Immunology http://bit.ly/TMlsTL, will allow patients to be treated sooner when they are much more likely to benefit.

"Sjogren's patients get diagnosed too late," says Julian L. Ambrus Jr., MD, professor in the Department of Medicine in the UB School of Medicine and Biomedical Sciences, an immunologist at Buffalo General Medical Center and senior author on the paper. "They go to the doctor because their eyes are dry or they can't swallow, but by that time, their salivary or tear glands are already dead. They're way past the point where they can generally benefit from any treatment."....

BRIEF COMMUNICATION (The Study )
Novel autoantibodies in Sjogren's syndrome
http://content.elsevierjournals.intuitiv.net/content/files/s1521661612002392-22104308.pdf

Last paragraph: (underline mine)
"The diagnostic criteria for SS and SD are undergoing con-
tinuous revision as more is learned about the pathophysiology of
these disorders. While Ro and La are autoantigens included in
the diagnostic criteria for SS, many studies have identified
patients with autoimmune SS and SD that do not have these
autoantibodies
[25
–
28]
. Other autoantibodies such as the ones
described in this manuscript may identify other subsets of
patients and/or patients at different stages of the disease. One
of the current challenges in SS and SD is to identify patients
early enough so that therapy can result in recovery of their
salivary and lachrymal glands. The autoantibodies to SP-1, CA6
and PSP may be helpful in this regard. New concepts regarding
early events in SS and SD may provide therapeutic targets once
these patients are identified.

[quietdynamics]

"...because Sjogren's Syndrome presents with various symptoms, unlike other autoimmune diseases, this diagnostic test will be marketed to several different types of physicians, including dentists, oral surgeons, ophthalmologists and rheumatologists."  http://www.newswise.com/articles/view/597254/?sc=rsmn

[quietdynamics]

We have heard from many posters who have not been Dx'd due to standard SJS criteria, yet, have symptoms. Some Drs will treat others will not.

As it is possible that as per information sited that those not having Ro/La may be in earlier stage, I would self-advocate and present this to your Dr.

Hopefully this test will:
-provide treatment early to stave-off progression and damage
- putting the test into the hands of DDS, Opto, Rhuem, provide for more expedient opportunity for testing.
-help Drs better ascertain when more investigation should be done, in the event this test is negative...so that another medical issue is not missed. 

New Sjögren's Antibody Discovery Improves Diagnosis
December 27, 2012 By Janice M. Epstein

With the approach of the new year also comes new hope for those with Sjögren's syndrome. A recent discovery of a new autoantibody associated with Sjögren's syndrome is leading to the development of a new diagnostic test that will more accurately identify a diagnosis of Sjögren's early in the disease process. This finding will pave the way to improved identification and treatment of this devastating autoimmune illness. Many of our PROSE patients with Sjögren's syndrome have been through a long journey of diagnosis and maintain hope that future Sjögren's sufferers won't have to endure a similar path.

Sjögren's syndrome is a chronic autoimmune disease in which the body's own cells attack moisture producing glands as well as other organ systems resulting in dry eyes and mouth, fatigue, and organ dysfunction. This disease affects as many as 4 million Americans with an estimated additional 3 million more cases undiagnosed. At present, there is no single definitive diagnostic test for diagnosing Sjögren's, only a set of diagnostic criteria, which makes diagnosis an often difficult and lengthy process for patients. When patients do not get an accurate diagnosis upon early onset of symptoms, effective treatment is delayed. This delay can seriously impact a patient's quality of life, cause undue stress and anxiety, and result in irreversible damage to organs and glands. Due to the significant impact of a delayed diagnosis, the Sjögren's Syndrome Foundation (SSF), a leading Sjögren's patient support and advocacy group, has set their sights on reducing the time to diagnosis by 50% in the next 5 years.

....these new antibodies were found in 45% of patients who met the current clinical criteria for diagnosis but did not test positive for the current antibodies used for diagnosis. At least one of the newly discovered antibodies was found in 76% of patients who were symptomatic for less than two years, yet lacked the disease markers Ro or La..."  http://blog.bostonsight.org/index.php/2012/12/new-sjogrens-antibody-discovery-improves-diagnosis/

[gardenlover]

What is this "magic treatment" that they can use if this is diagnosed early though?  Does not mention that unless I missed something.

[gold55]

Good question gardenlover!  I thought there was no medication to halt or slow the progression of this disease!  I would really like to know what can stop the glands from being "destroyed".  I also read in one of my books that the glands aren't totally destroyed and that SJS patients are left with 1/2 of their glands even after many years of disease. 

[quietdynamics]

What is this "magic treatment" that they can use if this is diagnosed early though?  Does not mention that unless I missed something.

The success is the achievement of an early test, pre the occurrence of antibodies Ro and/or La. It is not even dependent on ANA as a screening tool.
I am just happy at the prospect of people being diagnosed early and/or catching those who have symptoms, which have prompted them to seek medical attention, yet, they fall through the crack as they do not meet current criteria, thus may not receive treatment.

Example:
Early dental:
"One of the most important consequences of oral dryness is the loss of teeth
. Saliva has multiple functions within the oral cavity that include: lubrication of the mucosa
•so that the tongue can help with cleaning out residual food that leads to dental plaque and bacteria;
buffering of acids that reabsorb calcium from teeth; as well as the ability to modulate viral, bacterial, and fungal populations in the mouth.

The loss of teeth in SS patients results from a combination of low oral pH that facilitates
loss of dental calcium and the alterations of oral flora that lead to accelerated decay

The mainstay in the prevention of dental caries remains fluoride. A high dose 5% sodium fluoride varnish is currently available in the United States, but apparently not as widely used in the United States as in Europe...
The theoretical advantage of using the varnish is not only in the level of fluoride but also in the sustained release delivery system. One gel application of the varnish could release fluoride for up to 6 month.. and can be applied directly to the root and incisal surfaces that are most vulnerable to decay in the SS patient population.
http://www.robertfoxmd.com/SjogrensByFox/Dermatologic_Manifestations.pdf

hydroxychloroquine: From a study done on Lupus pts. (pg.5)
"In the LUMINA (Lupus in Minorities, Nature versus Nurture) cohort, hydroxychloroquine use was associated
with reduced accrual of new damage. Patients with no evidence of prior damage benefited the most, which seems
to suggest that early initiation of hydroxychloroquine potentially maximizes its benefits."
http://211.144.68.84:9998/91keshi/Public/File/7/8-9/pdf/nrrheum.2012.106.pdf

For myself the thought of those benefiting from this test and not having to wait the average 7-10? years for Dx, and to have a chance for treatment and not have damage due to chronic inflammation ...is huge.
The mental and emotional stress to themselves and family.

If as is estimated there are 4 million of us and 3 million more un-dx'd...the socioeconomic cost is a major factor.
Numbers do drive research.

Also, since the heredity/gene issue is there. This is a way to catch SJS early. We have autoimmune disease in my family, ITP...and in hindsight 'I do wonder if my mother had SJS', to-date we are at 5 females with thyroid disease, etc. The ability to have this early test given by a dentist or ophthalmologist is a relief. I hope Drs. will be receptive to it.

[Tharrell]

Couldn't have said it any better Quietdynamics! I just printed out both articles and dropped them off to my rheumy today. Can't wait what he has to say since he's beeing so difficult on diagnosing me.

[Styx]

Having a more sensitive serology for Sjogren's is great, even if the false-positive rate is crazy high. (I didn't see specificity discussed in the article.) Even if these blood tests are inaccurate, a positive result gives doctors a warm fuzzy feeling, and hopefully, they'll be more likely to treat.

Styx

[quietdynamics]

Having a more sensitive serology for Sjogren's is great, even if the false-positive rate is crazy high. (I didn't see specificity discussed in the article.) Even if these blood tests are inaccurate, a positive result gives doctors a warm fuzzy feeling, and hopefully, they'll be more likely to treat.

Styx

Not sure what you are alluding to in your post?
The beauty of the test is the early detection with extreme specificity, measuring 3 antibodies (there is no False-positive). The study is posted under Brief Communication: The Study.

"... a positive result gives doctors a warm fuzzy feeling, and hopefully, they'll be more likely to treat"
A positive result gives Drs. and actually dx, rather than an educated guess, from which to set treatment protocol.
I remember my Rhuem having my 'positive results" looking concerned and somewhat sad for me.

[Styx]

...

Not sure what you are alluding to in your post?
The beauty of the test is the early detection with extreme specificity, measuring 3 antibodies (there is no False-positive). The study is posted under Brief Communication: The Study.

"... a positive result gives doctors a warm fuzzy feeling, and hopefully, they'll be more likely to treat"
A positive result gives Drs. and actually dx, rather than an educated guess, from which to set treatment protocol.
I remember my Rhuem having my 'positive results" looking concerned and somewhat sad for me.

Considering that study doesn't have a control arm, how did they measure specificity? I don't see anything in the linked articles to support what you wrote above, but perhaps I missed it.

A true-positive gives a doctor a diagnosis.

Styx

[quietdynamics]

Per my original post:

BRIEF COMMUNICATION (The Study )
Novel autoantibodies in Sjogren's syndrome
http://content.elsevierjournals.intuitiv.net/content/files/s1521661612002392-22104308.pdf

The control is on pg. 4. Figure 2... See graph C.
Graph F showing percent positive for "novel anti-bodies" lacking Ro and/or La.

[Styx]

Doh. I missed it. Thanks, quiet.

The specificity is not too bad at all. This looks very promising.

Styx

[mshistory]

SS-A or anti-Ro aren't very good indicators of Sjogren's anyway - almost half of lupus patients are anti-Ro positive and this antibody is associated with the extreme photosensitivity so many with SLE have. An antibody unique to Sjogren's would be helpful if many people test positive for it once this is widely available. We're still waiting to see what symptoms of Sjogren's I develop in addition to my SLE - we suspect it but I can always hope we're wrong!

[sjenny]

Hooray for the researchers!  It is my hope that the use of lip biopsies to diagnose Sjs can fade into extinction . . .

[pweidema]

Does anyone know if this test is available yet?