Sjogren's

[Rebecca Petris]

I had the pleasure this afternoon to speak at a support group meeting of a local chapter of the Sjogren's Syndrome Foundation.

For those of you who aren't familiar with it, Sjogren's Syndrome is an auto-immune disease that attacks the moisture-producing glands. Sjogren's patients typically suffer from dry eyes (and you know what that's like...) but in addition, may suffer from dry mouth (not merely a matter of discomfort but causing serious oral problems, teeth problems, swelling of the esophagus, you name it), and a whole lot more depending how much of their body is being affected by the disease. It affects about 4 million Americans. There are about a dozen Sjogren's patients on Dry Eye Talk, I believe.

The meeting was quite an eye-opener. There is nothing that puts a problem in perspective so well as a worse problem. Listening to what these people deal with on a daily basis above and beyond dry eye was really something.

I was also struck by the fact that some of the members who spoke at the meeting had suffered from Sjogrens long before being diagnosed with it. One new member spoke of having had it so long she just thought it was normal. I'm mentioning this on the off chance any of you dry eye folks could benefit from testing for Sjogrens.

SSF is a nonprofit founded more than 20 years ago. They have a very nice newsletter called The Moisture Seekers and have a lot of local activities as well as national advocacy programmes. If any of you are looking for a nonprofit to donate to that is doing good in pursuit of better dry eye solutions, I'd encourage you to consider SSF. Check out theirwebsite too.

[Lucy]

I'm mentioning this on the off chance any of you dry eye folks could benefit from testing for Sjogrens.

Rebecca, that is a good suggestion for people....especially those who may suffer other symptoms in addition to dry eyes. I requested my GP test me for Sjogren's 4 years ago. I had an ANA test which came back low positive. I never did anything more on it, nor did my doc. More recently, I had carpal tunnel surgery and was researching some info for my surgery. I had just about all of the symptoms!

Recently, I asked my doc to repeat the ANA test which came back negative. I have not been back to him since. I don't think all the tests are necessarily accurate. (Sound familiar?) I still suspect I may have Sjogrens. However, at this time I have no reason to pursue a diagnosis. It wasn't until I came across a list of symptoms of which carpal tunnel is one that a lightbulb went off. Suspect, yes, but with the list-a real connection. I may at some time request further testing from my doc. I am busy with the "symptoms" and keeping them under control as best I can.

A GP doc can do basic testing for this if a person suspects he/she may have it. However, I believe for a real diagnosis it takes much more time and many doctors.

[Erik]

The ANA or anti-nuclear-antibody test is a non-specific marker of autoimmune activity of a certain broad type. As such, it is not always a helpful test to perform to diagnose autoimmune disease, though fals positives are far more common than false negatives.

Diagnosing Sjogrens (as with lupus and many other auto-immune diseases) is not simply a matter of ordering a blood test. These diseases are clinical syndromes, and generally have accepted "criteria" for diagnosis (I'll paste those for Sjogren's below), which were defined by experts in the field. You don't have to meet all of these criteria, but should meet most of them to be diagnosed with Sjogrens.

What your doctor should order for you, Lucy, is two more specific tests for Sjogren's called anti-SSA and anti-SSB (a.k.a. anti-La and anti-Ro) as well as a very broad marker of inflammation such as the ESR (erythrocyte sedimentation rate) and/or the CRP (c-reactive protein). One way to make sure the workup for Sjogren's is done correctly (or at least to increase your odds) is to see a Rheumatologist, rather than a generalist. Your generalist should be able to refer you.

I have seen a rheumatologist as part of my dry eye workup, and though she did not diagnose me with Sjogren's (thank goodness--those people often have it much worse than us), she did offer me some good suggestions for treatment of my dry eye (this was early, before I had heard everything 50 times already), and, perhaps more importantly, her sympathy for what I was going through.

One last thought: before Sjogren's was defined and given a name, a lot of people suffered from it and were not given a specific diagnosis. I continue to believe that there is somethng auto-immune that most of us post-Lasik dry eye patients have in common (ever notice that almost all of us are white, of European descent, and females are more commonly-afflicted than males? Take a look at the Sjogren's population sometime...), that may someday be better defined.

The criteria for Sjogren's include:

Ocular symptoms of inadequate tear production

Oral symptoms of decreased saliva production

Ocular signs of corneal damage due to inadequate tearing

Salivary gland histopathology demonstrating foci of lymphocytes

Tests indicating impaired salivary gland function

Presence of autoantibodies (anti-Ro/SSA, anti-La/SSB, or both)

[Lucy]

Thanks, Erik. It so happens that I have appointments next week with Dr. Butcher and my GP. I have confidence in my GP, although he does like to treat "everything" himself. I'll mention having those tests. I don't "need" the diagnosis for anything, but it sure would explain a lot of things. I've had joint surgery, carpal tunnel surgery...and the list goes on.

[Amy09]

Erik's post really makes me really wonder about autoimmune disorders and positive/negative results. My eye symptoms suddenly got a lot worse last year around August. During the same month I went to the dentist, and even though I brush twice a day, floss and don't have a history of cavities, he found six cavities during just one checkup! It was so strange that he decided to give me special perscription toothpaste to use because he thought my mouth may have gotten drier and caused the oral problems. Also in August, I went to the eye doctor about the eye problems I'd been having. He couldn't figure out what was causing the dryness, and then looked down at my feet (I was wearing flip flops) and was shocked to see that my feet were blue (there is a point to this). I told him my hands and feet always turned blue, white, or bright red, and that it was just the way i had been the past few years, nothing to worry about. He asked if they ever got swollen or numb, which surprisingly, they do. He was like, "That's called Raynaud's Phenomenon, which is a significant symptom of autoimmune disorders or thyroid problems, which is what is causing you eye problems." A couple months later I got tested for autoimmune disorders (the rhemotologist was sure i had sjogrens) but surprisingly the results came back negative. sometimes i still wonder if that could be a reason for my eye problems, even though it hasn't been medically "proven" as the cause. Anyways, i just felt like sharing that experience.

[Lucy]

Thanks, Amy. Although you are likely on the younger side to get it. It will be something to keep an eye on with your doctor as the years go by. From reading up on sjogren's, it often takes 10 years or more to make a diagnosis. Since we are all experiencing dry eyes, this is something to keep in mind.

Lucy

[spaniel]

Hi- Yes, these auto-immune diseases sure are a puzzle. I had rather high ANA's ( way way higher than borderline)- they just kept creeping up. I had every other test drawn by rheumatologist- but no positive for lupus or Srogrens or anything... go figure. then sure as shootin' they just started becoming negative... not even low borderline - just plain negative.
Now I do understnad there is something called secondary Srogrens, no?
(By the way I have Hashimoto's thryroiditis since age 25- now I'm fifty-two).

[GlobalJoe]

Sjogren's Trivia, Dakrina

Just some trivia with all of these posts on Sjogren's (sorry - don't how to add an umlat {sic} over the "o" in this format).....anyway, this syndrome was first diagnosed by Dr. Henrik Sjogren, of Sweden, sometime during the 1930's; hence the name for the syndrome. He also was the first person/doctor to label dry eye as KCS (keratoconjunctivitis sicca). Think through this and the origin becomes pretty obvious.
I assume (hate to use that word) all of you know that Dakrina was clinically studied at the Duke University Sjogren's Clinic...with Dr. Gary Foulks as the PI (Dr. Foulks is now at Univ. of KY as chief of the cornea service). The study never fully completed since Dr. Foulks was offered a position at Univ. of Pittsburgh about 2/3 way through the study.....HOWEVER - the results showed that Dakrina actually increased goblet cell density of the conjunctiva and the subjective commentary from the Sjogren's patients was highly positive. Goblet cells, as I'm sure this group knows, are responsible for the mucin component of the human tear film. No other tear has had anything close to this type of positive result in any dry eye study; regardless of what the folks in Irvine CA say about Restasis.
Enjoy the weekend,
Joe

[Erik]

As our British colleagues might say: spot on, Joe!

[dianat]

Dr. Foulks is my doctor. He's in Louisville and I'm in Cincinnati. His name sure comes up a lot in dry-eye studies and literature that I read. Dr. Holly had recommended him to me a year or two back. I'm glad to know Dr. Foulks is so actively involved in research. I'm even more glad to know I'm using the best drop I can as Dakrina is my drop of choice, aside from the serum drops.

[GlobalJoe]

Secondary Sjogren's

Hi Spaniel....yep.....secondary Sjogren's are those patients with pretty much all of the classical Sjogren's symptoms PLUS Rheumatoid Arthritis. Estimated at somewhere around 20% of all Sjogren's patients. RA is also an auto-immune disorder as I'm sure you know.
Joe

[GlobalJoe]

Thanks Erik

Erik....thanks for the kind words....cheerio ole chap !

[jcorbett]

Was Dwelle ever studied along with Dakrina? It is my understanding that Dwelle and Dakrina are identical, except that Darkrina contains Vit A. Do you think Dwelle would give the same results?

[jcorbett]

Dr. Foulks

I also have seen Dr. Foulks. He is the one who recommended testosterone cream for me. Other than that, he didn't have much to say. I wanted to participate in some trials, particularly diquafosol which was the big thing at the time. He told me Lasikees were not welcome in that study. I was a bit disappointed with my visit to him, although the t.cream did help.

[Scout]

The endocrinologist I saw for my hypothyroidism (from autoimmune thyroiditis) told me that current medical thought on autoimmune disease is changing. There are organ-specific types (like thyroiditis) and systemic types (like SLE--Lupus) but it is thought now that the patients who have the organ-specific types can have a low level autoimmune systemic response for many years prior to being diagnosed with a specific autoimmune disease and for years after . . even for the rest of your life.

The scope of the diagnostic spectrum of autoimmune response has widened tremendously. Now many forms of dermatitis (psoriasis, excema) are thought to be autoimmune inflammations and other contact dermatitis and allergies as well.

This is quite relevant to many of the people on this board who are struggling to find a correct diagnosis and treatment protocol for dry eye syndrome.

Restasis is on the market as a treatment for inflammation on the ocular surface. This inflammation can be caused by an autoimmune response.

Due to autoimmune issues, the only wetting drop I have been able to use without an inflammatory response is NutraTear.

To sum this up . . . you don't have to have an actual diagnosis of an autoimmune disease to have an inflammatory response that could possibly be caused by a low level autoimmune sytemic response.

Scout