Back from the doc and surprised

[stephgurl1986]

Hey everyone,

I came back from my eye doc today and was very surprised. I saw him because I need drops too often and don't know how I'm supossed to work in an office.
The reason why I'm so surprised is that I always thought (and was told so by several docs) that my major problem is my tear deficiency but today he said that my major problem is blepharitis. Wow...Everybody ever heard of a dry eye that is changing? I get my blood tested on Sjögren and other autoimmune diseases every few months etc and now my problem has changed?
I asked him for upper plugs but he said they are usually not used (thanks to this forum I know that this is not true). He said the only thing he could think of to reduce my redness, pain and amount of drops are hard contact lenses (not sclerals). I'm not quite sure about it.
He also said that my symptoms are really bad (redness, inflammation etc.) even though my test results (Schirmer, TBUT) are almost normal. So how come that I need drops like every 5mins and my eyes are horribly red when my eyes are "almost" normal?
I woud like to hear your ideas on this. Thanks you!!!

[calli66]

Hi Stephgirl,

I also have Sjogren's. I think I've figured out that the dryness is not as troublesome as blepharitis. The times that I have been so frantic and miserable that I have made a special visit to the eye doctor, they always told me I had Blepharitis.

I don't really know why Blepharitis makes the eyes so incredibly uncomfortable; maybe someone else can explain that. I think the Sjogren's eye is VERY likely to be inflamed, and produces quantities of toxic substances and debris, which quickly inflames the lids. Once inflamed, they can't provide the normal lipids that are needed to protect the eye.

I think that your doctor's opinion about not recommending upper plugs----he may be correct. This seems to be particularly true for Sjogren's patients. Plugging all puncta increases the quantity of inflammatory substances in the eye, making them MORE uncomfortable, not less. In my Sjogren's Support Group, most of the women mentioned to me that they had tried upper plugs, but had them removed because they didn't help.

Somehow, you've just GOT to get the Blepharitis under control. Having to use anti-bacterial ointments and steroid drops on very irritated eyes presents a problem. They're supposed to help, but make your eyes feel worse.

I have been in your situation---needing drops every 5 minutes---and they don't do any good, but you can't stand it without them! I'm sure you've tried every solution there is, and nothing helps. I used to fill my worst eye with Genteal Gel and wear an eye patch over it, just to get through a few hours without being a nervous wreck. For me, resting overnight with plenty of gel and goggles was enough to calm things down.

But it sounds like you have a case of Blepharitis that is much worse than I had.

Are you on any anti-inflammatory medications for the Sjogren's? I think my eyes have improved since I have started taking Plaquenil. They are still as dry as ever, but the inflammation is WAY better.

I know you will eventually feel better, once the inflammation lessens---but the question is: how to get to that point? What to do? I hope your doctor has some good suggestions. From me, I would advise super-cleanliness for your lids using the mildest foam and eyewashes, using the tiniest amount possible of the medications, using gel, and covering your worst eye as much as possible. That's the only advice I can think of right now.

Calli

[stephgurl1986]

Thank you for your advice. I think I wasn't clear enough in my first post. I don't haven Sjögren but I get tested on it every few months because doctors believe that I might develop it as it is rare for a 21 year one to have such a trouble with the eyes. But all these tests were negative, they haven't found anything and even my eye doc doesn't believe that I have Sjögren.
But anyway, this does not change my symptoms, they are still there and unfortunately my doc doesn't know/suggest any more treatments for me except artificial tears and hard contact lenses. I've have tried cyclosprine over a year now, stopped taking it a month ago and I don't see any difference so that I think it hasn't helped at all.

What do you think about these contact lenses?

[Julie1]

I'm not a doctor, and I'm not trying to diagnose you. However, it sure sounds like you have ocular rosacea with all the inflammation that is present. It might be beneficial to focus on ocular rosacea treatments.

[stephgurl1986]

yes, Julie, I have thought of that as well and I have asked this question to several doctors BUT they all told me that I would have skin problems then which I don't have at all, my skin is very dry. Are there other treatments for that except doxy (I still don't know whether I should take it)?

[Julie1]

It is possible to have ocular rosacea and to show little or no signs of facial rosacea.The severity of ocular and facial rosacea do not correlate. Also, some people experience signs of ocular rosacea first and later develop facial rosacea.

I went to two different local ophthalmologists who told me that they did not think I had ocular rosacea. Also, my family physician kept testing me every six months for autoimmune diseases only to find that the results were negative. I really think that most physicians do not have a good understanding of dry eye and assume that dry eye has to be caused by something autoimmune. Autoimmune disease processes are only one cause of dry eye and there are many other conditions or factors that can cause dry eye.

It wasn't until I saw Dr. Latkany in April 2007 that I found out that I had a pretty severe case of ocular rosacea and MGD. He also said that I had a mild, approaching moderate, case of facial rosacea as well as patches of seborrheic dermatitis on my forehead between my eyebrows. Dr. Latkany said that ocular rosacea is often missed and that most doctors assume that rosacea patients have an aqueous deficiency. My dermatologist says that the rosacea is very mild and would not recommend treatment.

I would follow the eye spa treatment method and also to be very patient. Dr. Latkany said it would take about six months to a year before I noticed a difference and the results would be gradual. I really didn't notice a big difference until about November or December 2007. You may want to try some fish oil/flaxseed supplements. You can talk with your doctor about trying doxy. I was on minocycline for a while, but Dr. Latkany said to stop taking it because it obviously was not helping and that there are some possible risks with long-term use.

I am doing a lot better now. I still have bad days but the good days are more frequent. When I have burning, it usually only lasts for a few minutes or hours and does not last all day like before. I also still experience the menthol (or cooling) sensation on occasion, but it's not as severe. I've gone from using drops every 5/10 minutes to drops in the morning and night. I will sometimes use some drops during the day but sometimes that's because of a habit. The rims of my eyes are still somewhat inflammed and I have veins in my eyes, but the inflammation has subsided quite a bit. I have found that most people really don't notice this redness, and my priorities have changed since the onset of my dry eye. I care more about how my eyes feel than how they look.

I hope that helps!

-Julie

[stephgurl1986]

Thanks so much Julie! I think I won't know exactly what I have until I see Dr. Latkany - but I'm from Europe, so this is quite difficult.......But I definitely plan to go to NYC this or next year, I just have to...

@ all: Everybody ever heard of hard contact lenses as treatment for dry eye? What do you think about it????

[brd888]

Blepharitis

If you have blepharitis there should be obvious redness, flakiness etc around the base of the lashes - can you see evidence of this?

Regards.

[Randal]

Thanks so much Julie! I think I won't know exactly what I have until I see Dr. Latkany - but I'm from Europe, so this is quite difficult.......But I definitely plan to go to NYC this or next year, I just have to...

@ all: Everybody ever heard of hard contact lenses as treatment for dry eye? What do you think about it????

I'm not sure about hard lenses (or, RGP lenses) as "treatment" for dry eye, but many optometrists -- including mine -- feel that they are a good type of lens for those who have dry eye.

I've been using RGPs for a year and a half now and have found them much more comfortable than soft lenses. Right now -- for only a week or so --, I'm trying a pair of soft lenses in order to experiment with monovision lenses (one eye for distance, the other for reading), and I'm already, after only a day of wearing soft lenses, being reminded of why I like RGPs so much better.

Randal

[stephgurl1986]

If you have blepharitis there should be obvious redness, flakiness etc around the base of the lashes - can you see evidence of this?

Regards.

My lashes are fine, but the inside of my lids is red and inflammed and when I do lid massage I can feel a high pressure (as if there was something hard inside) on my lids