Monday, November 18, 2013

"A New Dawn for Sjogren's"

Wiki Commons: Sun Rising at Dawn

It was a good week for Sjogren's!  Three important articles that I saw in just one week.  I'm always pleased when I see more scientific research and attention being brought to the disease for us Sjoggies and I do hope this is a trend. "A New Dawn for Sjogren's":  I couldn't resist the headline from The Rheumatologist.

This article was particularly relevant to me since it linked Sjogren's and inflammation to local neurological pain. As most of you know, I have significant neurological symptoms with my disease. For a long time that was a real problem. Neurologists couldn't figure out what was wrong me and I ended up being prescribed pain drugs and basically told to go away.  There was not a perceived link between the pain and Sjogren's. This article goes in to how the symptoms that are often talked about as "benign" such as dryness, muscle and joint pain, fatigue, and brain fog to name a few can be the most pernicious.  As the authors Robert Fox, MD, PhD and Carla M. Fox, RN write:

In order to make a significant difference in the quality of life for patients with SS, new therapies must not only improve extra glandular manifestations of SS, also alleviate the symptoms (fatigue, dryness, and pain) that lead to patient disability….This will require better cooperation between rheumatologists and experts in the field of neural pain circuits. With a more focused effort, the complex interplay among immune, neural, and hypothalamic pathways in SS may finally be unraveled.

I've always known there was a link between my pain and the Sjogren's, but seeing a researcher detail it and call for new therapies is really welcome and I think may be helpful for others.  I would encourage anyone if you find an article with new research relevant to your symptoms, print a copy and take it to your next doctor's appointment. In my experience, bringing articles like these to the attention of my doctors helps them treat me. 

Given how many we are, the actual dollars spent relative to other conditions is still disappointing to me, but perhaps these announcements and calls for more research over the last few weeks represent a new trend! At least I can be optimistic they will help raise awareness among doctors, scientists, and patients that could really lead to "A New Dawn for Sjogren's" and some relief for us in the not so distant future. At least that's what I'll continue to pray and advocate for everyday.

Wednesday, November 13, 2013

Celebrating A New Diagnostic Test for Sjogren's

Long Shen, Ph.D. and Julian L. Ambrus Jr., MD

It looks like there's an exciting development to share about diagnosing Sjogren's. There's a new diagnostic panel called Sjö(TM) being made available that includes biomarkers for the disease.  Hip hip hooray!  The hope is that these tests will help reduce the long time to diagnosis that so many patients endure.  It's close to 5 years for the average Sjogren's patient and I've talked to many where it's taken significantly longer.  You can read more about this exciting news here.

The Sjogren's Syndrome Foundation will be partnering with the test's distributer (Nicox) to educate eye doctors about this autoimmune disease (AI disease) and the new testing available.  As many of you know, my motto is that "Sjogren's is more than dry eyes and dry mouth" so I'm hoping that rheumatologists and ENT's and maybe even neurologists that treat AI disease will eventually be brought into the Foundation and Nicox's education campaign.

Now, back to the tests. Being an inquisitive Sjoggie, I couldn't help myself and wanted more information about the exact tests that would be in the panel.  I found this article in Optomotry Times with lots of interesting details.  

The test...combines three proprietary biomarkers (salivary gland protein-1 [SP-1], carbonic anhydrase-6 [CA-6], and parotid secretory protein [PSP]) with traditional markers antinuclear antibodies [ANA], Ro, La, and Rf [rheumatoid factor]).

What's so important about these markers is that they can often be found earlier in the disease process than the traditional Sjogren's antibodies.  

Traditional tests for the disease use ANA, Ro, La, and Rf antibodies, which exhibit sensitivity limitations or are associated with later-stage Sjögren’s syndrome....The newer antibodies were found in 45% of patients meeting the criteria for Sjögren’s syndrome, but lacking antibodies for Ro and La. In patients diagnosed with xerostomia for less than 2 years, 76% had antibodies to SP-1 or CA-6, while only 31% had antibodies to Ro or La.

These new biomarkers have the potential to make a big difference for patients with clinical Sjogren's symptoms that do not initially test positive for the disease.  In my humble opinion, earlier diagnosis can lead to earlier treatment and a reduction in autoimmune complications.  So that's something to celebrate and big thanks and round of applause to those hard working University of Buffalo scientists Long Shen, Ph.D and Just L. Ambrus Jr., MD (pictured above) who made this scientific discovery possible!  

Monday, November 4, 2013

Mechanical Empathy...Better Than None

Picture Illustrative
There are many barriers to doctor and patient communication that have been widely chronicled here and elsewhere. 

One common complaint I hear from my friends with a range of chronic conditions is that if doctors could just "experience what I'm describing they would treat me differently."

It is a simple truth that in the vast majority of cases doctors cannot literally "feel" the pain or symptoms that their patients are describing. Of course most doctors have had the common cold or the flu, and perhaps even a broken bone or two, but when it comes to more uncommon conditions, like autoimmune disease, it is unlikely they have actually experienced the conditions.  And I and many other patients I know believe that makes it harder for them to relate to what we are experiencing. My personal belief is that this comprehension gap between patient and doctor is one of the reasons that many with autoimmune conditions go undiagnosed for so long and the severity of their conditions at times may be dismissed. 

As a result, I was interested to see this this article from Medpage about an actual suit to help doctors physically experience some of the limitations that RA patients do.  [Read and see an actual picture here]. Gloves from the suit were made available to try on at the American College of Rheumatology Conference this past week in San Diego. While the suit is designed to be specific to RA, many autoimmune diseases involve joint stiffness, inflammation, and limited mobility, so in my opinion it has broader relevance for most rheumatologists.  Even wearing it for just a half an hour can give someone an idea of what it means to live with mobility limitations when trying to navigate simple tasks that most take for granted.  While I would never wish an autoimmune disease upon anyone, I believe it's very helpful for those treating it to have a glimpse of what their patients go through and to see why from a clinical perspective finding the most effective treatment can be so critical for the quality of patients' lives.

These suits obviously can't impart the experience of physical pain, fatigue, and the myriad of other symptoms that many autoimmune patients have, but maybe sometime in the not so far off future, computer simulations can be combined with suits like these to make the autoimmune experience even closer to "real" life.  It might seem like out of Star Trek, but who knows what the future holds.  I hope that this development may be a part of a trend that leads to faster diagnosis, more timely treatments, and patients feeling better understood when they walk out of their rheumatologists office.