autoimmune?

[kayti]

I am wondering what is wrong with me...I have had dry eye for about 5 years now, and am only 27. I also have a dry throat and am constantly drinking water. I have been tested for Sjogrens in the past, both blood and biopsy and both came back negative. I do take Evoxac to help with my throat, even though I dont have a diagnosis of Sjogrens. My question is what is the underlying cause of this dryness?? My eyes often get so dry that I cannot function...even going to the mall for an hour leaves my eyes in great pain. I have tried plugs, omega 3s, warm compresses, preservative free drops, restasis, everything. Every doctor I go to tell me that yes my eyes are dry, but they do not know why. My thinking is there must be something wrong. This is not normal to be in this condition at this age. Does anyone have any suggestions? Thanks!

[nycdryeyegirl]

I am wondering what is wrong with me...I have had dry eye for about 5 years now, and am only 27. I also have a dry throat and am constantly drinking water. I have been tested for Sjogrens in the past, both blood and biopsy and both came back negative. I do take Evoxac to help with my throat, even though I dont have a diagnosis of Sjogrens. My question is what is the underlying cause of this dryness?? My eyes often get so dry that I cannot function...even going to the mall for an hour leaves my eyes in great pain. I have tried plugs, omega 3s, warm compresses, preservative free drops, restasis, everything. Every doctor I go to tell me that yes my eyes are dry, but they do not know why. My thinking is there must be something wrong. This is not normal to be in this condition at this age. Does anyone have any suggestions? Thanks!

Hi,

One of the suggestions I have for you, if you have not done so already, is to consult with a rheumatologist who can test for any underlying auto-immune conditions you might have. It took a number of years for my blood tests to show up positive for Sjogren's Syndrome (although I had symptoms of this condition for a long time).

My second suggestion is that you might want to consult with an ocular immunologist (physician who specializes in inflammatory eye conditions). In my case,I had seen a number of opthamologists and it was the current eye doctor (ocular immunologist) who was able to make the correct diagnosis.

Do you live in California? If so, there are a number of very good ocular immunologists located in California, which can be found by looking at the "www.uveitis.org" website by clicking on "patient services" and then located on the left side of that page is the link "List of specialists" where you can find the ocular immunologists located in your state.

I hope this information has been helpful for you and if you have any other questions please ask away!

Pam

[sanna]

Kayti,

There are many reasons for dry eyes, medication, hormones, lasik/lasek, diabetes, sjögrens, ocular rosacea, MGD, red eyes, and so on. Do you know why you drink so much water ? did the doctor tell you ? You say you take evoxac (i do not know what that is) for that, does it help ?

[kayti]

nyc - I have already been to a couple rheumatologists and been tested, with the negative tests they have been quick to rule out autoimmune. I have heard that you can still test negative and have sjogrens. I have probably been tested 3 times over the past 5 years. I went onto the website that you suggested and found some doctors close by at UCLA...I have an appt this coming week with another doctor who specializes in dry eye, but I may make an appt for both. What was your final diagnosis?

Sanna - I have never had lasik, dont take medicine besides the evoxac, dont have diabetes. I drink a lot of water because my throat dries out and it makes it feel better. None of the doctors I have been to have really paid too much attention to this fact, and they can find nothing wrong with me. The evoxac is a medication for people with Sjogrens that increases moisture production in the mouth (and some say in the eyes). It lubricates my mouth more, but as far as my eyes I am not sure.

[nycdryeyegirl]

[QUOTE=kayti;48572]nyc - I have already been to a couple rheumatologists and been tested, with the negative tests they have been quick to rule out autoimmune. I have heard that you can still test negative and have sjogrens. I have probably been tested 3 times over the past 5 years. I went onto the website that you suggested and found some doctors close by at UCLA...I have an appt this coming week with another doctor who specializes in dry eye, but I may make an appt for both. What was your final diagnosis?

Hi,

Yes, it is true that one can have sjogren's syndrome and still test negative for the sjogren's markers (i.e., ssa and ssb auto-antibody blood tests and/or lip biosopy)) which was what happened to me.

In my case, it took a very long time for the sjogren's syndrome blood tests to show up positive and since then, my blood tests for sjogren's have been almost always positive (lucky me! )

From what I've read there are two excellent ocular immunologists in the Los Angeles area and they are:

Dr. Ralph D. Levinson
Ocular Inflammatory Disease Center
Jules Stein Eye Institute (Website)
100 Stein Plaza, ULCA
Box 957000
Los Angeles, CA 90095-7000
Tel: (310) 206-7202 Fax: (310) 794-7905

Dr. Narsing A. Rao
Professor of Ophthalmology
Director, Uveitis Service
Doheny Eye Institute (Website)
Keck School of Medicine
University of Southern California
1450 San Pablo Street, DVR-211
Los Angeles, CA 90033
Tel: (323) 442-6645 | Fax: (323) 442-6634

Thank you for listening to my sob story (I tell it every chance I can get!) and I hope one of the doctors that I listed above will be able to help you.

Pam

[kayti]

Pam, thank you so much for your suggestions. It is always nice to talk to someone who understands and who has been through similar problems. I have actually already seen a doctor at USC, not the one you mentioned, but he wasnt able to give me any answers. I am looking into UCLA. Who finally diagnosed you with Sjogrens? What do you think helps you the most with your symptoms? I am glad I am not alone...

[willwork4tears]

Negative for blood tests

It definitely sounds like Sjogrens. I am 29 and your symptoms sound very very similar to mine. Extreme dry eyes, dry mouth, drinking lots of water. I am on pilocarpine (FYI for others out there: pilocarpine & Evoxac are the only drugs to increase saliva production) and it helps a lot.

I tested negative for EVERY autoimmune test the rheumatologist could throw at me. The big four they use for Sjogrens are SSA, SSB (specific to Sjogrens) and ANA, RF (general for many AI disorders). I was negative to all four in Apr 2007 and again in Nov 2009. The rheumatologist also tested me for all the lupus and RA antibodies and I was negative for everything. (She ordered so many tests the bloodwork bill was $4000!!!)

I eventually gave in and had the salivary gland biopsy done and it was positive for Sjogrens.

You can definitely have Sjogrens disease and be completely negative for the autoimmune antibodies. The gold standard for diagnosis is the salivary gland biopsy.

[nycdryeyegirl]

Pam, thank you so much for your suggestions. It is always nice to talk to someone who understands and who has been through similar problems. I have actually already seen a doctor at USC, not the one you mentioned, but he wasnt able to give me any answers. I am looking into UCLA. Who finally diagnosed you with Sjogrens? What do you think helps you the most with your symptoms? I am glad I am not alone...

Hi!

After having symptoms of Sjogren's for so many years, my Rheumatologist of the past fifteen or sixteen years finally gave me the diagnosis of sjogren's when the blood test markers for this condition started coming back positive. I was so thrilled to receive this diagnosis since I had in the past repeatedly negative blood tests as well a negative lip biopsy.

I primarily have dryness from the sjogren's in my esophagus and on my skin, so I try to remember to drink more fluids, especially water every day and for my dry eye disorder I use preservative-free eyedrops on a daily basis.

I had contacted a local area lupus support group organization (lupus is my primary condition) and was able to get the recommendation of two terrific doctors to treat my underlying auto-immune conditions. If you have not done so, perhaps you might wish to contact the Lupus Foundation of America and/or look at their website, where they chapters located in California for a referral to a good rheumatologist.

One of the best advices I have ever been given, was by one of the two rheumatologists that I periodically see. He said that the most important thing is to see a "good doctor who will take you seriously" and that is a motto that I prescribe to.

If you have any updates to share please let me know.


Pam

[Lucy]

Pam, it's good that you were diagnosed after showing antibodies in your blood! Average is 7 years from onset (a guess) to diagnosis. The diagnosis is actually the biggest hurdle.

With "good docs" you'll have docs who will care about you and work with you on what medicines will help you the best. Good luck going forward. Lucy

[kayti]

I have actually tested negative once for lip biopsy...so I am not sure if that completely rules out Sjogrens or not, I have heard conflicting reports on this. I have recently visited Dr Carver and he diagnosed me with Blepharitis/MGD. I have been on a regimen of treatments for a few days now...I saw a good improvement the first few days and now have seemed to go back to almost where I was before. I am trying to keep positive. I really hope that this is my problem and that I can significantly improve. But I have little hope left in doctors, so I am not sure. I guess the only way to tell is to wait and see how and if I improve over time.

[marcalans]

Dr. Levinson

I visited Dr. Levinson at UCLA for LASIK-induced dry eye and other related problems. He could not help me much, but I found him refreshingly honest. He is a corneal specialist who is also certified to perform LASIK, but refuses to do it because of outcomes like mine. He told me that LASIK has evolved primarily into a means by which doctors can easily make a lot of money, but he is not interested in practicing medicine that way. I was impressed. It is difficult to find good corneal specialists who have not been caught up in the LASIK wave.

[willwork4tears]

I have actually tested negative once for lip biopsy...so I am not sure if that completely rules out Sjogrens or not, I have heard conflicting reports on this. I have recently visited Dr Carver and he diagnosed me with Blepharitis/MGD. I have been on a regimen of treatments for a few days now...I saw a good improvement the first few days and now have seemed to go back to almost where I was before. I am trying to keep positive. I really hope that this is my problem and that I can significantly improve. But I have little hope left in doctors, so I am not sure. I guess the only way to tell is to wait and see how and if I improve over time.

Kayti,

The short answer to your question "I am not sure if that completely rules out Sjogrens or not" is No. A neg test result does not definitively rule out Sjogrens.

Here's the long answer to your question:
There is a a research article published in a peer-reviewed rheumatology journal that reports the sensitivity and specificity of the salivary gland biopsy for Sjogrens diagnosis.

Sensitivity = 82.4%
Specificity = 86.2%

The sensitivity of a test is the probability that the test is positive when given to a group of patients with the disease. A large sensitivity means that a negative test can rule out the disease.

The specificity of a test is the probability that the test will be negative among patients who do not have the disease. A large specificity means that a positive test can rule in the disease.

So basically, you have greater than a four out of five chance that the negative biopsy result for Sjogrens is correct. Hopefully this information will help you come to some sort of conclusion. Kudos to you for trying to stay positive in the absence of a conclusive diagnosis!

I attached the PDF of the journal article for anyone who is interested in reading it.

[willwork4tears]

Sorry...the file was too big and it didn't correctly attach. Here is the URL for the article. Anyone should be able to open it for free. If anyone has trouble opening it, email me and I will email the article.

http://www.ncbi.nlm.nih.gov/pubmed/7...m&ordinalpos=3

Kayti,

The short answer to your question "I am not sure if that completely rules out Sjogrens or not" is No. A neg test result does not definitively rule out Sjogrens.

Here's the long answer to your question:
There is a a research article published in a peer-reviewed rheumatology journal that reports the sensitivity and specificity of the salivary gland biopsy for Sjogrens diagnosis.

Sensitivity = 82.4%
Specificity = 86.2%

The sensitivity of a test is the probability that the test is positive when given to a group of patients with the disease. A large sensitivity means that a negative test can rule out the disease.

The specificity of a test is the probability that the test will be negative among patients who do not have the disease. A large specificity means that a positive test can rule in the disease.

So basically, you have greater than a four out of five chance that the negative biopsy result for Sjogrens is correct. Hopefully this information will help you come to some sort of conclusion. Kudos to you for trying to stay positive in the absence of a conclusive diagnosis!

I attached the PDF of the journal article for anyone who is interested in reading it.

[nycdryeyegirl]

I have actually tested negative once for lip biopsy...so I am not sure if that completely rules out Sjogrens or not, I have heard conflicting reports on this. I have recently visited Dr Carver and he diagnosed me with Blepharitis/MGD. I have been on a regimen of treatments for a few days now...I saw a good improvement the first few days and now have seemed to go back to almost where I was before. I am trying to keep positive. I really hope that this is my problem and that I can significantly improve. But I have little hope left in doctors, so I am not sure. I guess the only way to tell is to wait and see how and if I improve over time.

Hi!

As I stated previously, I had a negative lip biopsy as well as negative blood tests for sjogren's syndrome and approximately four years later, my blood work came back positive for sjogren's. Since then, my blood tests for sjogren's have been mostly positive

I know that this is just from my own personal experience but I can venture to guess that there are others who were in my own predicament and had initially negative blood tests and/or lip biopsies then went later on to test positive for sjogren's.

From my own perspective, I think it is very important that you have a good rheumatologist and opthamologist who will take your symptoms seriously, diagnosis your condition correctly and treat you accordingly.

Have you consulted with either of the two eye doctors I suggested? If not, perhaps you might want to. I had to see five eye doctors to get a proper diagnosis and from what I've been reading on the DEZ, this is not too uncommon!

Are you feeling any better/ seeing any improvements with your dry eye symptoms?

I know it is a cliche but hang in there, persevere and stay positive!

Pam

[kayti]

I was recently diagnosed with bleph/MGD by Dr Carver, so I am working on the treatment for that to see if that helps with my symptoms. I have seen some improvements, however am still noticing the eye with the punctual plug is much more moist than the one without a plug. If this does not improve, I plan to get the plug put back in my right eye. I have made some calls into UCLA, they were giving me the run around, but finally said I could make an appt. So I plan to do that.....still not sure what is causing all this, but I am feeling somewhat better.