We Need More Research for Sjogren's Syndrome

Sjogren's Awareness Bracelet

I had a hunch for some time that there weren't enough studies on Sjogren's Syndrome (SS).  In reading articles about recent autoimmune disease research, it seemed there were more studies on other diseases.  Well, it turns out that my hunch might not have just been a hunch.  In a review published last month in Expert Opinion in Pharmocotherapy evaluating treatments for Sjogren's, the authors found that there are have been few large studies on how to effectively treat primary SS.  Click here for the abstract. 

Given the high prevalence of Sjogren's among autoimmune diseases this should not be the case. 

Most larger random controlled trials (RCT -- which are the gold standard in scientific research) have focused on evaluating how a treatment effects symptoms of dryness for SS patients. As I have written about before, Sjogren's is more than a dry mouth and dry disease and patients can also experience other debilitating symptoms such as fatigue, muscle and joint pain, neurologic, and organ involvement.  It's far from a fun combination of symptoms and more research clearly needs to be done on how to improve these serious complications of SS.

A few points this article really hit home and made me realize that Sjogren's patients should expect more from the scientific community and must continue to push for more comprehensive research whenever possible.

• A good deal of the treatments used to for symptoms of SS is based on research from other autoimmune diseases such as SLE and RA.  This is even true of the use of corticosteroids and methotrexate.

• Studies involving Sjogren's patients often involve a small number of patients and in larger studies the focus tends to be on symptoms of dryness or glandular aspects of the disease.  

• Biologic therapies targeting B cells seem to the most promising area of treatment including the use of rituximab and epratuxumab.  Surprisingly, there have been more studies on rituximab and greater evidence for its use in Sjogren's patients than there have been for immunosupressive treatments such as methotrexate.  However, rituximab is still considered an off-label treatment for Sjogren's.  I'm not a doctor or scientist, but this doesn't seem to make much sense.

• The good news is that authors see the treatment of Sjogren's improving as biologic therapies become more specific. Two trials are in thew works using Belimumab (Benlyista), which targets the activation and stimulation or over-stimulation of B cells.  It has already been approved in the treatment of lupus.

I agree with the authors that we need more and larger trials specifically designed for Sjogren's patients, and especially trials focusing on the systemic aspects of the disease.  Sjogren's patients should not just be treated based on outcomes from trials and research for other autoimmune diseases.  That would seem obvious, but it's not the case today. 

A Modest Proposal

Here's an idea. It might seem simple, but to me it would be a big improvement if there was a way for doctors to share and compare the way they treat their patients. This would be a Sjogren's Syndrome Treatment Registry, similar to the Sjogren's International Collaborative Alliance funded by the NIH. Specifically, this would mean there would be a database kept by each hospital about each patient treated with SS, including symptoms, treatments, and results. It would be anonymized, of course.  

From my discussions with physicians, this registry would be quite helpful to them. Most say they are working with little actual data, and are largely confined to the clinical patients and results they see. (This is a larger problem in medicine I realize, but for specialized diseases I believe it is even more acute.) This data could also help provide insight into what trials should be funded.  Furthermore, a registry could help doctors and scientists systematically match specific disease complications to which treatments are successful or unsuccessful.  As many of us with autoimmune disease know, what works for one patient does not always work for another and rheumatologists often try a number of treatments before finding one that works.  

So, all this said, why is Sjogren's ignored to date?  I don't know, my husband claims we have bad branding. Could it be the name? It is hard to say and spell and that makes it hard to raise awareness in some ways he claims.  Maybe there's something to it. I don't know, but there doesn't seem to enough action in the area at the moment. 

Of course, more studies and funding are not only needed for Sjogren's but also for autoimmune diseases generally.  And it is the perfect time for all of us to put on our lobbying and activist hats because March is Autoimmune Disease Awareness Month. There is lots of work to be done. Our collective voice can make a difference.

How do you think we can improve research and treatment for SS and other autoimmune diseases?