Some Information to Share with your Eye Doctor about Sjogren's

General
1

Last year, Immco developed an early diagnostic test for Sjogren's that can detect Sjogren's well before anti-Ro/anti-La tests show a significant result. This information from Immco lets your eye doctor know there is a simple test for patients with dry eyes, particularly women over age 40, that can determine if they may have Sjogren's and allow for positive early intervention:

http://www.immco.com/sjogrens-syndrome/default.aspx

For eye doctors:

Your patients' dry eye symptoms may be rooted in a serious, progressive autoimmune disease

Sjögren’s Syndrome affects an estimated 4 million people in the US, of which 3 million are undiagnosed.
  • Sjögren’s Syndrome is 1 of the 3 most common autoimmune diseases.
  • It is a slowly progressive disease characterized by degrading exocrine glands, which are responsible for producing moisture.
  • 9 in 10 Sjögren’s Syndrome patients are women.
  • Sjögren’s Syndrome can occur alone (primary) or in association with another autoimmune disorder (secondary) .
Currently, there is an average delay of 4.7 years for patients to receive an accurate diagnosis for
Sjögren’s Syndrome.
The early symptoms of Sjögren’s Syndrome commonly present as routine dry eye.
  • Dry eye is a common early symptom of Sjögren’s Syndrome and is considered a hallmark of the condition.
    • Minor symptoms caused by systemic conditions such as Sjögren's Syndrome are often first addressed by an eye care professional (ECP).
  • Because the disease is most common in middle-aged women, dry eye symptoms caused by Sjögren’s Syndrome are often attributed to menopause.
  • The clinical presentation of Sjögren's Syndrome can be broad and nonspecific.
As many as 1 in 10 dry eye patients also have Sjögren’s Syndrome.
Sjögren’s Syndrome may present first as dry eye, but can progress to the whole body.
Often patients are diagnosed in late stages of the disease, after gland degradation has taken effect.
In the past, diagnosis of Sjögren’s Syndrome has been challenging, with limited tools and invasive procedures
  • Multiple tests need to be carried out to confirm a diagnosis.
  • Salivary gland biopsy has traditionally been the gold standard for diagnosis even though it is invasive.
  • Traditional biomarkers associated with Sjögren’s Syndrome may be less likely to detect the disease at an early stage.

2

This is long overdue news! I'm so glad this is NOT another invasive test!

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So, I did my bit at the eye doctor's today. I talked to him about this new blood test, which he had not heard of, and actually pulled out this discussion on my IPAD to show him the name of the drug company who created the test. Unfortunately, he didn't actually write it down --- I hope he remembers later. I also let him know that a good followup question to ask someone with chronic dry eyes is whether they have had tooth problems or salivary problems. He didn't know Sjogren's cause dental issues, I hope you all can help keep your eye doctors up to speed, too -- every conversation helps.

4

I had an appointment with my new rheumy yesterday. He is absolutely thrilled with the advent of this test (which was what finally diagnosed me). He walked through it and my previous bloodwork in a way the other guy never did. He said the test is a wonderful breakthrough for people like me who test negative for everything but very definitely have SS. It was my eye doc that caught on and ordered the Sjo test, btw. He was pretty mad at my other doctors that just dropped the ball when my RA tests all came back normal instead of trying to get to the bottom of what was happening.

5

That is great, Enjoylife! So glad your eye doctor knew about the new test. Mine didn't, and I am sure there are many who don't. It's up to us to teach the ones who don't.

6

Yep…I'm not sure where you are located, but the new rheumy said it was created by a Professor/Researcher up in Buffalo. (way upstate NY). I'm down on the Island so it may be that we heard more about it because it was local. You would think the docs would stay up on new stuff coming out, but Sjogren's is under diagnosed or delayed diagnosis because its ignored by too many of them.