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Schirmer's test for dry eyes


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#1 Margaret

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Posted 25 February 2010 - 10:57 AM

Hi Everyone,

Gareth and I just got back from his yearly eye doctor appointment and he commented (again---said the same thing last year) on how dry his eyes were. I told him the dentist said the same thing last month about the inside of his mouth. Well, he went and got the strips for the Schirmer's test and Gareth's came out 3 and 4; normal is over 6. So, does this confirm a diagnosis of Sjogren's or is that just another symptom of the UCTD/Sclero? Just curious. He gave me drops to put in his eyes daily, it seems like an easy fix.

Take care, Everyone.

Margaret

#2 erika

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Posted 25 February 2010 - 11:24 PM

Dear Margaret,

Last year I went to that test and my result was also 3. The immunologist doctor wrote "dry eyes but still insufficient data to confirm Sjogren". There must be certain antibodies in the blood to confirm primary Sjogren's. As I have learned Sjogren's can be primary (if it exists itself with no other autoimmune disease) or secondary to the autoimmune disease (AID). There might be other causes of dry eyes and not always AID (like thyroid, menopause in women etc.). Often dry mouth comes with dry eyes.

For my dry eyes I was given eye drops (these are artificial tears) and I feel better now (although I take them only twice a day - if I do not forget).

Regards

Erika

#3 Shelley Ensz

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Posted 26 February 2010 - 10:52 AM

Hi Margaret,

As I understand it, a positive Schirmer's test is just one piece of the puzzle for a Sjogren's diagnosis. But it is an important piece. So is the dentist's observation of dry mouth. It may help to get copies of those medical records and share them with the rest of Gareth's medical team.

Thing is, they usually want to confirm the diagnosis with blood work or lip biopsy. And it may not make any difference at all in Gareth's treatment plan, either.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Sharon T

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Posted 26 February 2010 - 12:57 PM

A couple of years ago I had dry eyes so bad that it hurt to blink and felt as if I'd left my contact lenses in overnight (but I haven't worn contacts in years!). My optometrist did some test using a strip of paper and said that I didn't even register on the strip. He prescribed Restatis drops which I use one or twice a day, and they have really made a difference for me. Much better than any of the over-the-counter (OTC) drops I'd used before.

Regards,
Sharon T.

#5 Margaret

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Posted 26 February 2010 - 03:46 PM

<<they usually want to confirm the diagnosis with blood work >>

Shelley ,

I e-mailed his rheumatologist about the Schirmer's test and she e-mailed back that she is mailing a blood script for Gareth to test him for Sjogren's. That is one test he hasn't had in the past. His eye doctor is sending the report to his primary care physician and rheumatologist.

Take care, Everyone.
Margaret

#6 Jeannie McClelland

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Posted 26 February 2010 - 04:14 PM

Hi Margaret,

Here's a link to the blood tests that are often used to help define a diagnosis of Sjogren's Disease from the Sjogren's Syndrome Foundation's website. Not everyone will test positive (about 70% do, though) and like scleroderma, diagnosis is often based on clinical observation. Like Shelley has said, the treatment is often the same regardless.

I use drops for my dry eyes, I just wish I could figure out how to get them in the eye the first time around! I've managed to put them in my ear (flinched at the wrong moment), in my mouth (tasted terrible), even once up my nose (ran down my upper lip, but it was better than getting them in my mouth again)! The heavier ointment you can use at night seems to work really well, but having woken up to a dog tongue cleaning up my eyelids, I only use those as a last resort! Posted Image

Warm hugs,

Jeannie
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#7 mando621

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Posted 27 February 2010 - 01:20 PM

Hey,

The schirmer's test has been low for me for the last 5 years. I've never tested positive for the antibodies for Sjogren's but I noticed on my chart at my last doctor appointment, they had listed Sjogren's.

As to putting in eye drops with ease, try pulling down on your lower lid, it forms a pocket just right for dropping a drop in. You can see it better in a mirror, but I usually end up without any of the drop lost which is a great relief to your eye. Some eye drops end up leaving a residue on my eye lashes so I like to make sure I don't get it into my eye lashes to begin with. Less flinching with this method because it doesn't look like your going to poke your eye.

Mando.

#8 Shelley Ensz

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Posted 04 March 2010 - 08:25 AM

Hi Margaret,

Any news yet on Gareth's blood test for Sjogren's?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Margaret

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Posted 05 March 2010 - 06:44 AM

Hi Shelley ,

Gareth just got the blood script yesterday and went in today to have it drawn. The lab tech says it will take a couple of weeks because it goes out to Quest Labs.

Take care, Everyone.
Margaret

#10 Margaret

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Posted 24 March 2010 - 01:14 PM

Hi, Everyone ,

The good news is the blood work came back negative. His rheumatologist says that it's only positive in 70% of the cases and she wanted to know if I felt it was necessary for her to set up a biopsy of his salivary gland. I said 'no'.....at least not now. I would still have to put drops in his eyes and keep tabs on his dry mouth. She agreed with that. Thanks for all the good thoughts.

Take care, Everyone.
Margaret

#11 Shelley Ensz

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Posted 24 March 2010 - 01:35 PM

Hi Margaret,

I'm happy/sad the blood work came out negative for Sjogren's. Happy because that might mean good news, sad because it might mean a longer wait or more testing to know for sure whether Gareth has Sjogren's, or not.

As you well know, I don't know enough to pass an entrance test to a first aid exam! But my input on this is that salivary lip biopsies are invasive and not pain-free. However, they are just done in the lab and stitched up so it is very little time from start to finish, and it is not a hospitalization or even out-patient surgery. I'm very used to surgery and stitches and such, but still, it was bothersome to me for about a week. You know how it is with the tiniest thing in your mouth, how it feels like it is gigantic and the swelling makes for an ever-present danger of biting it and making it worse.

Maybe Gareth can tolerate a lot and wouldn't mind it so much, but -- here's the thing: would it change his treatment plan any, if it was positive for Sjogren's?

And it's not like he 'needs' a diagnosis in order to qualify for disability or anything. So, at least for now, I think you are following a good plan.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Margaret

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Posted 25 March 2010 - 06:50 AM

Hi Shelley ,

The reason I said 'no' to the biopsy was because others on this site had said how painful and sore it was!!! See......I do learn new things once in awhile!!! I can't put him through that since it wouldn't change anything medically. His doctor agreed.

Take care, Everyone.
Margaret

#13 CraigR

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Posted 25 March 2010 - 11:26 AM

(If it hasn't been mentioned) dry eyes and mouth are frequently caused by certain drugs.

I have Sjogren's, with a Schirmer test of barely 1 - but I only need to add eye drops every few days. It's far worse at night - when the mouth becomes so dry that the tongue gets inflamed.

I usually always test positive for Sjogren's antibodies but have had occasion to test negative, so the test can't be relied upon to always be correct. On account of this, I like to be sure and get the Sjogren's test any time I am tested for autoantibodies.

Craig

#14 Shelley Ensz

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Posted 26 March 2010 - 05:15 AM

Hi Margaret and Craig,

And I approach antibody tests just the opposite. If they are going to make a change in my treatment, well, then, okay.

But if you have ever tested negative and then positive, and then negative, all the bets are off as to how your doctor is going to interpret that! I'm not ever in the mood to be a ping pong ball; I've had my fill of that.

So once a thing has been diagnosed (whatever it is), either with or without antibodies, I let sleeping dogs lie. For example, once Sjogren's was diagnosed (based on other things, not bloodwork), I never again asked to have Sjogren's antibodies run. Sure, they might "prove more" that I have Sjogren's, but what difference does that make in my symptoms or diagnosis or treatment?

By the same token, if they were ever positive, I wouldn't ask to have them run again (if I met criteria without them, that is) because what would that prove -- if they were then negative at that moment, would it really prove that I do NOT have Sjogren's?

There are a few rheumatologists who rely almost exclusively on blood work for diagnoses. They can bat you around like ping pong balls, one minute having lupus, the next visit Sjogren's or scleroderma, and following close on the heels of that, absolutely nothing at all! You might never find a rheumatologist who admits to relying on bloodwork, however in practice you might find a few who appear to rely on it more than clinical evaluation. I know people who have had lupus for over a decade, with years invested in meeting all the criteria and finally achieving a diagnosis. Then for whatever reason, they end up with a new rheumatologist and in one single initial visit with no antibodies, while on a hefty medication program, they are completely undiagnosed. You tell me, were the antibody tests a help or a hindrance in their situation, needing to start all over again for qualifying for the diagnosis they already had in order to keep on the medication that was keeping things under control?

Antibodies can appear and disappear, and go from low to high or very high. Once you are already sick, once you are already diagnosed, once you already have treatment in place for it, it can be totally crazy-making to have antibodies run over and over again. After all, what does it mean? Does it mean you are more sicker, if so, don't you know that already from your symptoms? Does it mean you are somehow magically healed? If so, don't you already know that from your relief of symptoms?

Okay, I am a thoroughly rotten patient. I question too much! But if doctors want to invest money in my medical care, I feel it should be for the types of tests that move things forward, not just confirm, question or dispute things that are already fully established. It makes me a tad recalcitrant because sometimes it is just the way they do things, but really, we all have a right to see that tests we have done are actually productive for both us and our doctors, and not just confusing or debatable.

So I always ask "Why?" Why do they want to run such-and-such a test? Is it for their benefit, or mine? Can it be skipped or delayed with no real cost to my health? I think it's fair, once the initial diagnoses are made, once a fair pattern of antibodies are established (or not), once illness has basically settled down into a pattern, that we have every right to question "Why?" on certain repeated tests.

Worst thing of all we can find out is that we gain an understanding of why we really do need to have them, now. And at the very least, our doctor should appreciate that we don't just want a lot of testing, just because it is usually done.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 CraigR

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Posted 26 March 2010 - 02:01 PM

Shelley,

I think I'm a little misunderstood. I don't have the situation of a rheumatologist constantly running tests - we are looking at a test that may be run once every 3 or 4 years, especially if there is a change. Since I've had the disease for 33 years, perhaps I forget about those who are stuck in the crazy situation of trying to get a new diagnoses. But people should be aware that tests can be wrong or inaccurate, and not put so much trust in a single test (especially if trying to get a new diagnosis). The time that I had a negative test, my rheumatologist wrote it off as a bad test, since the severe symptoms were still there, and spontaneous remission from Sjogren's is highly unlikely.

And of course the assumptions aren't even conclusive. I have always had a negative Scl-70, which I hear is associated with lung problems, yet I have pulmonary hypertension.

My philosophy, if you have a rare disease is that you must endeavor, as much as you can, to try and be your own doctor a much as you can. I don't engage in any treatment that my research doesn't agree with. Doctors may be good sources of information, but the decision is mine.

I'm often reminded of a nonsensical statement my father used to say: "Never forget that 50% of all doctors graduated in the lower half of their class."

Craig

#16 Shelley Ensz

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Posted 26 March 2010 - 02:44 PM

Hi Craig,

Oh dear, I'm sorry, I didn't mean to misunderstand you!

I think we're actually coming from the same place. You're talking about a very long time period, and actually quite infrequent testing, and basing it on significant changes in your health, which needed looking into.

And thank you for clarifying it so that newbies understand that it would be unusual, generally, to have antibody testing at every visit. We've had hotline callers very upset because their doctor wouldn't run antibody tests every single month, hoping to find something new as their symptoms are so vague; and the antibody panels are expensive and not likely to be repeated that often if there is not a significant change in symptoms.

You were fortunate when your doctor quite aptly figured the negative test was wrong; sometimes, people are left perplexed because their doctor believes more in the negative test result than in their present symptoms. Particularly in the initial stages of diagnosis, but sometimes even after many years of a solid diagnosis.

And it is a great point you made -- that remission from Sjogren's is highly unlikely! So normally, once a diagnosis is established (through any combination of criteria), unless there are dramatic changes for better or worse, it might be questionable to repeat the diagnostic antibody testing, frequently.

You very wisely take things into your own hand, by doing substantial research on your illnesses and treatments. It puts the odds in your favor of getting appropriate care.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.