I finally had an ophthamological exam the other day. First came the Schirmer test to measure tear production. Result was 15. Not good compared to most people, great compared to many here who have scores as low as zero. Then came the exam with dye.
The doctor kept commenting over and over how dry and irritated my eyes looked. I asked, if I have a lowish but not unreasonable amount of tears, why are they dry? He explained in my case the sebaceous (oil) glands had been destroyed. Think of a piece of glass. If you throw water on it the water quickly sheets off and away and what doesn't evaporates immediately. If you throw oil on it a protective coat remains. Same for eyes. He said good quality tears typically remain visible on the eye (thanks to the diagnostic dye) for about ten seconds. In my case, after blinking to redistribute tears, the protective film evaporated instantly. Though I have a reasonable quantity of tears my eyes are completely unprotected by the usual protective coating. I really hate the idea of salt crystals forming from evaporation and then being rubbed into my eyes every time I blink. The doctor said my eyes are damaged but managing to self repair thus far but if this keeps up much longer I'm going to develop opacities which will permanently scar the eye and impair vision.
He said plugs and Restasis don't help much when the issue is quality, not quantity. Offered treatments included good quality over the counter eyedrops and an offered to begin a lifelong treatment with the antiobiotic doxycycline which, for unknown reasons, apparently often helps in cases of sebaceous gland destruction.
I was unaware the dye test could provide that type of info and wanted to put this out there in case others didn't know either.
Apparently besides Sjogren Syndrome, ocular rosacea and sle lupus can cause this type of sebaceous gland issue as well.
Hi Gphx,
I sure know what you mean about the oil glands; having been fighting that mess for a while now as well.
Did your opthamologist say what the scores for your eyes were? I've had that test several times and the left eye has scored a zero on one occasion, but the best they have been is around seven for the left and nine for the right (anything below a ten is considered dry eye).
I have plugs in the lower ones and one in my left eye, and also use Restasis (find them helpful and they don't hurt as bad as before - just wish I could keep one in the lower left eye).
When I first went to the opthamologists, was also put on Doxycycline; and after six weeks of taking it, developed terrible itching (wind up with reactions of one kind or another when taking any antibiotic, ugh).
Hang in there and I hope that Doxycycline works out for you.
Take care of yourself -
Patze
I have the same problem. I scored 10 and 6. My eye doctor also suggested good quality drops used more frequently then I had been, warm washcloth compresses in the morning and 1000mg of flaxseed oil twice a day. They seem a bit better now, we'll see at the next exam. I think it would help even more if I would stop going to bed without washing off my eye makeup. I don't wear makeup very often, but when I do, I usually forget to take it off before bed. Bad me! ::) Tak care and feel better!!! Jennier
Hi Gphx,
Thanks for that info. Ditto Puccini! I don't wear eye makeup very often any more but when I do I frequently forget to remove it before going to bed. My Eye Dr. also recommended flaxseed oil as well. It has helped a little. Like the others, I hope you feel better.
Catilee 2
When I was told that they first suspected that I have SS my eye doctor did a Schirmer's test on me. I scored 10 and 19 and he told me I was fine, but I have been on prednisone and I wonder if that made my symptoms better. I have such burning and gritty eyes, even after 2 months on Plaquenil. I wonder if I should make an appointment with an Opthomologist. Anyone have any suggestions.
I would, unless your optometrist is very familar with autoimmune disease and specifically SJS. I changed eye docs because my insurance would only cover additional visits if I saw an opthomologist instead of an optometrist.
Hi Melo,
Have you had an evaporation test done (it's different than the Schirmer's)? It's not painful and I get the second type of test a couple of times a year to make sure that the old peepers aren't getting worse (I have Meibomian Gland Dysfunction (MGD). If it were me and I was having the burning and gritty eyes again, I'd see if I could see an opthamologist soon (for a second opinion).
I can't speak if the prednisone helped any or not as I've not been on it, and hopefully a more knowledgeable member will stop by with some info about it.
Take care of yourself -
Patze
Hi Patze, the moisture score was 15, pretty good considering my symptoms for the past few decades. Is there a score for oil production or something else? If so I don't know and didn't get one.
Ah Patze, your subsequent post explained there's a test for evaporation. I don't know if he did one specifically or just noticed the dye was gone from my eye almost instantaneously following each blink. In any case he didn't give me a score and was astounded at what he was seeing given a not-so-bad Schirmers.
Melo - Patze is right on. Have them check for evaporation. If mine hadn't done that he wouldn't have known though I've known for many years. I'm sure there are many wonderful optometrists but I've had optic neuritis before and with my ongoing issues I won't see anything but an ophthalmologist. Apologies to any optometrists out there.
Very good information here on dry eye and what it is. GPHX's doctor actually did his job. Imagine that. Keep that guy. Many eye docs, especially ophthalmologists just say take Restasis and use artificial tears and send you off. If your eye MD isn't good at helping, many optometrists are likely to give you more help and spend more time with you. MD's are busy doing Lasik and basically dry eyes is not $$ productive. Obviously GPHCX's dr is an exeption.
The scores of our Schirmers and TBU tests are not necessarily a good example of how we are feeling. Someone can have a Schirmers of 15 and have eyes that hurt and seem very dry. A person with zero Schirmers may not have the burning and be fairly comfortable. For example, I am zero in both eyes and one hurts like the dickens and causes me much grief and pain. The right eye doesn't hurt nearly as much. I suspect I will always have zero Schirmers because I had Lasik surgery and then Sjogrens Good luck with your eyes. Lucy
Thanks so much for the info everyone. I plan to make an appointment with a Opthamologist tomorrow. :)
GPHX,
Thank you for this post. I'm going to print it out and take it to the eye doctor with me on my next visit.
Livvie2