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RBolander 08-14-2003 09:05 AM

Corneal erosion/blepharitis/dry eye or all of the above
I've been reading through messages and I figure I am in for the long haul with my eye problem. I'm wondering if anyone else's symptoms match mine.
In April the vision in my right eye improved 50% in a few days, thus making it difficult to see out of my right lens (glasses). At the same time, my eye became irritated. Ophthalmologists and specialists could find nothing wrong with my retina, so that was ruled out. They said to use artificial tears for the irritation.
In a couple weeks my vision returned to its normal (bad) state, but the irritation continued. It was mainly a burning sensation, and at night, when my eyes were closed and as I was falling asleep, my right eye would touch a tender spot which would wake me up. My eye doctor felt my problem was corneal erosion and started me on Muro 128 drops during the day and Muro ointment at night. After reading people's descriptions of corneal erosion, however, I questioned whether that was my problem. When I felt that little irritation in my eye at night, I could blink and move my eye around and I didn't the same sensation until I started to drop off to sleep again. It seemed as though that irritation was up in my lid. But I did seem to have dry eye problems. By the way, my left eye seems to be fine.
A few weeks ago I went to another ophthalmologist. He felt that my problem was related to blepharitis, told me to stay off the Muro, put me on tetracycline, and has me cleaning my lids with baby shampoo and warm compresses. At night I'm using GenTeal gel in my right eye. My eye doesn't burn the way it used to, but it's definitely not back to normal.
I've been trying everything I can think of: Thera Tears, Thera Tears Nutrition, warm compresses, baby shampoo on the lids.... This week I started using Restasis drops. What I wonder is whether the eye irritation is something I'll just have to live with or whether it will just take a long time to get under control. There is improvement. However, it seems that being outside in the wind sets me back again. I can't seem to pinpoint what else sets it off: sometimes reading, sometimes watching TV.
I hope this post isn't too long and cumbersome. It's just that this has been going on since April and it's discouraging.

Jen2003 08-14-2003 11:40 AM

Hi RBolander - I got blepharitis for the first time last April. Mine was specifically an acute case of meibomitis caused by a sensitivity reaction to an over-the-counter eyedrop called Naphcon A. I was VERY discouraged for about a month and a half - didn't seem to get any better (in fact, it got worse!). My ophthalmologist kept telling me that it's not something like a sore throat that just goes away after about a week. You have to be really aggresive if you want to get it under control. After doing all the eyelid scrubs, compresses, massages, drops/ointments, etc I finally did start to see some improvement. Actually, my greatest jump in improvement was when I stopped taking all those prescription drugs my ophthalmologist was giving me. Now I am symptom-free, but I still do the daily eyelid cleansing, massaging, and compresses in the morning just to keep this diseaes at bay. And I also try to drink LOTS of water throughout the day. So there is definitely hope for getting this condition under control. Each person's remedy seems to be unique, so you just have to experiment and see what works best for you. I have found exercise to be really helpful. I am running for at least an hour almost every day and this seems to have been good for my eyes (as well as for the rest of my body). Good luck to you in your search for a remedy. You can and will get this disease under control!

RBolander 08-21-2003 07:24 AM

Thanks for responding. Actually, my eye does show improvement. I don't know if the Restasis is working or if the daily treatments and tetracycline have finally helped. I have noticed, however, that my progress fluctuates. I may have two days of little irritation, and then the next day I notice a slight burning and sensitivity in my right eye again. Then I'll have a couple more days of very little irritation. At least the conditions are growing better and better all the time and the burning is never (knock on wood) as strong as it was even a month or so ago.
Does the inconsistent progress seem normal?

Jen2003 08-21-2003 10:45 PM

Hi RBolander - I'm so glad to hear you're experiencing some improvement, especially with that burning sensation. I think that is the absolute worst thing about blepharitis - not being able to fall asleep because your eyelids are on fire! Ugh!! I wish I could tell you if your progress is normal, but to be honest with you, I don't know. I've only had this condition since April myself. What I can tell you, though, is that you're kind of going through the same thing I did. You get a little bit of improvement for a couple days, then you have a bad eye day. Then the improvement seems to last for a few more days, then another bad eye day. It's hard to pinpoint what sets off those bad days. But I haven't had that burning sensation for a long time now and my eyes don't seem to be that dry. I use that GenTeal Gel myself - I think it works great (I used to use Systane, too, but not anymore). It sounds like you have the same kind of blepharitis I have - meibomitis. Is this true? And, just out of curiosity if you don't mind my asking, what are your other symptoms? I never really had swollen,red eyelids - did you? And I never had excessive tearing, discharge, or styes. My eyeball seemed to get more irritated than my eyelid. Is this true for you as well? Hmmm..... Okay, I hope you continue to experience improvement. It sounds like you're on the road to recovery.

RBolander 08-22-2003 10:14 AM

Hi Jen2003,
It does make me feel a little better to read that I'm not the only one experiencing good days with alternating bad eye days. I just hope that the bad eye days become fewer and fewer. I guess my slow progress is normal.
I do not know what causes the irritation to flare up on those set-back days. I don't seem to be doing anything out of the ordinary. Maybe it's possible that reading for a long period of time can do it.
The ophthalmologist never told me what type of blepharitis I had. I've never experienced a great deal of redness of the eye or excessive tearing. My main symptoms have been the frequent burning sensation, the slight irritation at night when my eyes moved under my eyelid (I haven't had that for a few weeks now), a general feeling of irritation or inflammation (it's very difficult to describe!) in a nonspecific area of my eye, and "raw" areas under my eyelid. Oh, yes, and more intense dry-eye irritation after I've been outside in the wind.
I just returned from a trip to Cambria, CA, and while I was there I had very little trouble with my eye. Maybe that's because I was busy and it kept my mind from obsessing. Now that I'm home, I tend to notice that there is a slight irritation again. It's very difficult to describe, though. It's almost as though it's on the verge of burning--but not the full-fledged burning sensation that I was experiencing for months. I have been using Restasis twice a day. Is it possible that the Restasis drops are irritating my eye more than helping it?

Jen2003 08-22-2003 04:07 PM

Hi RB - my ophthalmologist kept reassuring me that things would get better, but I'd have to be very patient because getting back to "normal" could be a really long, slow process. Apparently, it can even take several years for a person to get this condition under control (according to the Merck manual). So I guess we just have to be thankful for the improvement we are experiencing. It sounds like you have started to turn the corner, and I think you can expect to have more good eye days from now on. It's just such a relief to get rid of that burning sensation, isn't it?!! I think that's by far the absolute worst thing I've ever had to deal with. It's hard to describe to people who haven't experienced it, so they don't understand what you're going through. I've heard of the drug Restasis but don't know much about it. What is it - a steroid, antibiotic, NSAID? Do you think it has helped your overall situation? I wouldn't be surprised if it is in fact irritating your eye, but maybe not. In my case, I had to stop all the drops the ophthalmologist was prescribing me because they were clearly making my situation worse. I started to get better once I didn't use them anymore. But that doesn't necessarily mean that's true in your case. I would ask your doctor about it, though. Okay, keep me posted on your improvement. Hope you contiune to do better!

purple2067 08-22-2003 08:32 PM

Some people (including myself) are allergic to cyclosporine, the active ingredient in Restasis. Restasis, by the way, is a NSAID.

RBolander 08-23-2003 07:59 AM

Pardon my ignorance, but what is an NSAID?

I'm also wondering if I should change the way I've been using the Restasis drops. After I twist the top off the plastic vial, I put a drop in my right eye and then set the vial aside so that I can continue to use it until it's empty. I put a drop in every twelve hours, so the contents of the vial might last three or four days. Is that a "no-no"? I know that the directions say to throw the container away immediately after use, but I'm wondering if that is merely a way to sell more of the product, or whether the solution will change after exposure to the air over a period of time.

Jen2003 08-23-2003 11:15 AM

Hi Purple - thanks for the info on Restasis. Sorry you're allergic to it. Are you suffering from blepharitis, too? If so, what are you doing to combat this condition?

Hi RB - NSAID in an acronym for "non-steroidal anti-inflammatory drug". Sometimes people prefer these drugs to steroids because steroids that are introduced into your system can have adverse affects on other organs (i.e. liver) if taken for a long time. And they can also affect intraocular pressure, so you have to have your eye pressure checked periodically. I think there may be some drawbacks to NSAID's as well, but I'm not sure what they are. I don't know if the way you're using the Restasis drops changes their effectiveness over that short period of time (?). It's possible, I guess. But I totally understand your wanting to stretch it out to make it last longer. I'd probably do the same thing myself. Maybe your doctor will give you a better answer. Okay, hope you're having a "good eye day"!

purple2067 08-24-2003 12:26 PM

I don't have blepharitis, but I do have clogged Meibomian glands (the tiny glands at the base of the eyelashes that produce the oily layer of tears). I have this for some unknown reason. It is usually associated with Blepharitis, but for me it's just got something to do with dry eyes, probably from an auto-immune disorder. But basically the treatments are similar. I use hot compresses twice a day and massage my eyelids to release the clogged oil. The only thing I don't do is use baby shampoo to clean my eyelids because my eyes are too sensitive and allergic for that. I also use plenty of preservative free artificial tears and I use preservative free steroid eyedrops.

As far as keeping the Restasis after opening it, you can do it as long as you refrigerate it. Restasis has no preservatives in it, so if it is not kept cold after opening, then it can befome infected with bacteria. If you keep it cold (get an empty pill bottle and stand it up in the fridge) then it will be fine.

[This message has been edited by purple2067 (edited 08-24-2003).]

RBolander 08-25-2003 10:28 AM

Thanks for the advice on the Restasis. I'll start refrigerating it after I open it.

The doctor has not really explained to me what is actually going on with my eye. Is the burning sensation coming from underneath the eyelids, or is it the cornea? Does blepharitis affect the tear/oil/mucous ducts in such a way that other complications arise? If the cornea were causing the irritation, wouldn't the doctor be able to see the affected areas of the cornea?

RBolander 08-26-2003 03:08 PM

This is a Post Script to my previous message:

The "Note" on the Restasis label says to store the drops at 59 - 77 degrees F. I'm wondering how the colder refrigerator temperature will affect the opened vial.

purple2067 08-26-2003 08:41 PM

[quote]Originally posted by RBolander:
[b]The doctor has not really explained to me what is actually going on with my eye. Is the burning sensation coming from underneath the eyelids, or is it the cornea?[/b][/quote]

Since my dr explains everything to me, I'll try to relay some of my information! The burning sensation could be caused by either inflamed eyelids or an inflamed cornea or dryness. Since you have blepharitis, it is likely that your meibomian glands aren't producing the proper amount of oil (those are the glands in your eyelids at the base of your eyelashes that produce the oily layer of your tears). If they are clogged, then they are not going to produce the right amount of oil, which can lead to dryness and might explain why your eyes are burning. Or it could just be that your eyelids are inflamed and they are what is burning. Only your doctor can tell you that.

[b] Does blepharitis affect the tear/oil/mucous ducts in such a way that other complications arise? If the cornea were causing the irritation, wouldn't the doctor be able to see the affected areas of the cornea?[/b][/QUOTE]

As I explained, when the meibomian glands become clogged then they don't produce enough oil. When there is not enough oil in your tears, they slids right off of your eyeballs. The cornea cannot CAUSE the irritation. Rather, it can be what becomes irritated. The complications of blepharitis are that not enough oil is produced and the tears roll right off of the cornea, therefore making the cornea dry. If your corneas were dry, they would have dry spots on them. Sometimes mine are so bad that my dr says they look like flaking skin. In order for the dr to determine this he would have to put some sort of stain in your eye. Mine uses fluorescein, which is an orangeish/yellow color and it stains all of the dry, rough, irritated or scratched spots on the cornea, turning them green when the dr examines the eye under the blue light. Sometimes when my eyes are at their worst, my dr can see the dry spots without using the stain. But in order to fully examine the corneas and look for dry spots, scratches, inflammation, etc... the dr needs to use a stain.

purple2067 08-26-2003 08:43 PM

I don't know how the colder refridgerator temp will affect the open vial of Restasis, but I do know that refridgerating it is better than leaving open vial at room temperature, because then it will collect bacteria. Also keep in mind that they were not counting on you saving the open vial in the fridge after opening it. I think that the temp it needs to be stored at after opening is probably different than the temp it needs to be stored at before opening.

[This message has been edited by purple2067 (edited 08-26-2003).]

Jen2003 08-26-2003 10:58 PM

Hi RB and Purple - I'm heading up to the Sierras to go backpacking for about a week. I'm kind of nervous because I don't know how my eyes will react. It's pretty intense back-country kind of backpacking - meaning you hike all day with your pack on, there's no warm water unless you boil it (only source of water is from the lakes and rivers that come right from the snow melt - brrrrr!), you sleep on the ground (in a tent if it's raining), it's freezing at night, you have to cook over an open fire (smoke kills my eyes), and the climate up there is super dry. And it's not the most sanitary of conditions, so I'm kind or worried about keeping my eyelids clean and my eyes moist. Any suggestions? Wish me luck!

RBolander 08-27-2003 08:21 AM

Thank you, Purple, for your explanations. My doctor used one type of drop to examine my eyes, but I don't know which type. Apparently, he didn't see anything unusual on the cornea. The strange thing is that it's so difficult for me to tell where the burning sensation is coming from. The areas underneath my eyelids do not look red and inflamed.
I've been taking Thera Tears Nutrition for a couple months now, and I've been trying to eat a lot of walnuts and almonds. Maybe that will help eventually. If the oil glands aren't producing enough necessary oil for the cornea, however, then the liquid tears probably don't remain on the eye for long.

Jen2003, I'm sorry, but I don't have any advice to give you for your backpacking trip. Take a lot of liquid tears. Where there's a will, there's a way. Have fun!

Mara 08-29-2003 01:11 PM

Hi All! Sure hope your eyes are feeling better. I do a few things to keep the eyes as comfortable as possible & hope you get something out of this post. I apologize in advance for the length but did not want to skip something that may benefit you. Good Luck!

I think there are a few types of blepharitis:
Staphylococcal blepharitis
Seborrheic blepharitis; seborrheic/staphylococcal blepharitis
Meibomian seborrheic blepharitis; seborrheic blepharitis with secondary meibomianitis
Primary meibomianitis
* * *
When my eye doctor's technician instills the drops in my eyes (two different types) prior to the slit lamp exam it is to dilate the eyes so the doctor can see inside the eye. The doctor was able to see the dryness of the cornea by how the dye stained it (i.e.: cornea)and told me she thought it was rheumatologic (I have Sjogrens-ss;rheumy dx'd that). I have punctal plugs in the upper and lower puncta (to keep the tears I produce in my eyes). With a somewhat involved history, ss, graves/mild, on, amblyopia, dry eye, blood in eye, conjunctivitis, palpabral swelling (blah-blah-blah) I see the eye doctor often depending on what she wants. I recently had corneal topography and they tested the ocular pressure.

I have experienced quite a few strange ocular sensations as you have. That range and vary from stinging, pain, pressure, stabbing or dull pains, foreign body sensation, irritation, redness, blepharospasms (upper and lower lids) etc.

I use the liquid tears and lubricants (preservative free) in both eyes during the day and a thicker lubricant at bedtime.

I too use Restasis (started recently) and there was a dosage issue when I had it filled. I read the pamphlet, called the pharmacist then the eye doctors technician (eye doc on vacation). She told me one drop in each eye two times a day. I reviewed the info. with the pharmacist.

Confusion due to the wording on the viles themselves "one use, then discard". The tech repeated herself. I brought up the contamination issue…Storage temps state 59-77 degrees F. I keep the vile body in an upright position-at its base it is secured within a smaller vessel (surrounding the base of the vile only), the vile tip is not handled and protected from contamination by being stored in a closed-draft free cabinet away from light.

The risk of contamination is likely to occur if the vile tip has direct contact.

The active ingredient: cyclosporine 0.05%
“Which is thought to act as a partial immunomodulator. The exact mechanism is unknown“.

It is contraindications in patients with active ocular infections and in patients with known or suspected hypersensitivity to any of the ingredients in the formula.

There are precautions made regarding the single use vile; any remaining contents should be discarded.

I have to take the dosage/discard issue up with the eye doc and pharm. What is 0.4 mL equivalent to in drops? It is in a container that is 0.9 mL. The pharma stated there are 4 drops per vile (which is = to my total 1 day dosage but then the discard precaution issued on vile is bogus. (?) Maybe I will write the company. I want to know-this is expensive. They should be conducting another trial soon. I hope to partake in the study.

I have heard of using the original formula of Head.Shoulders to wash eye lids.

There could be several things going on. The wind blowing and being outside especially dries my eyes even more. I wear sunglasses and avoid ac when possible. I don’t use a blow dryer-they are that dry.

Blinking frequently helps to stimulate tear film production. Change your pillow cases every day. When you dry your face-use paper towels/napkins for each eye area (drying one at a time: left-towel-discard, right-towel-discard). This way it is more difficult to transfer bacterium. Drink plenty of water, wash pillowcases with fragrance free detergents-don't line dry them (outdoor allergens), when you apply the Restasis follow the instructions and wait the allotted time before instilling other lubricants. Pamper your eyes. Try to avoid rubbing or touching your eyes or if you must make sure you wash hands. I am sure you do, but at work, while reading you may not think to do it. We pick up a lot on our hands and transmit it to our eyes unknowingly possibly introducing a bacterium. Been there-done that-forget the tee-shirt!
When showering be mindful of the products you use on your skin and hair and the ocular reaction you have if any.

It is not uncommon for me to put drops in until the eye feels better. Sometimes both the eyeball and the lid feel very gritty and dry. Sometimes burn and irritated, sometimes just dry-dry-dry so I apply-to-the eye! :) :) :)FEEL BETTER

Mara 08-29-2003 01:24 PM

[quote]Originally posted by RBolander:
The doctor has not really explained to me what is actually going on with my eye. Is the burning sensation coming from underneath the eyelids, or is it the cornea? Does blepharitis affect the tear/oil/mucous ducts in such a way that other complications arise? If the cornea were causing the irritation, wouldn't the doctor be able to see the affected areas of the cornea?[/B][/quote]

Voice your concerns to your doctor and have hime explain it to you. When my eyes were severely dry I had similiar confusion...was it dryness of the lid or the eyeball. For me was it is both. Sometimes when the eyes are dry and I put in drops and rotate the globe (lids closed) it feels as though I just put something in my eye which sensory wise felt more irritated. A way to beat that is to keep instilling the lubrication. If I were you I would call your doctor and ask him what his findings were and discuss the therapy in detail. Ask him if there is anything you should avoid (certain soaps etc).
Good Luck :)

RBolander 08-31-2003 09:39 AM

I appreciate all the information and advice that I've been reading in these posts. I also must say that my eye is showing major improvement. (Knock on wood!) The burning occurs less frequently, and I can stay outside in the ocean breezes with much less irritation to the eye.
I read a post somewhere that mentioned massaging the eyelids, which, I suppose, stimulates the oil glands. I've tried running my finger along the lower eyelid, but nothing seems to happen. I would appreciate more detailed directions as to what to do.

[This message has been edited by RBolander (edited 08-31-2003).]

purple2067 08-31-2003 08:27 PM

[quote]Originally posted by RBolander:
[b] If the oil glands aren't producing enough necessary oil for the cornea, however, then the liquid tears probably don't remain on the eye for long.

But the artificial tears have their own ingredients in them that are going to make them stay on the corneas. I could be totally wrong, but don't they have some sort of oil base? If they didn't, what would be the good of them?

Artificial tears don't depend on our natural tears for the necessary oils. They are better and don't need anything from the natural tears (for those of us who HAVE natural tears!) The ingredients in the artificial tears will make them stay on the eyeballs, so when it comes to them staying on our eyeballs, it doesn't really matter if we produce any oils or not. That is taken care of with the artificial tears.

Also, somebody on another message board just posted this about storing Restasis, so you may want to rethink it after all.

"I know some people are storing their Restasis in the refrigerator and have even been advised by their doctor to do just that. I just read the following info on another board. I can't attest to its validity, but the doctor making the statement is a PhD. and founder of the Dry Eye Institute. I thought I'd pass it along and maybe people can discuss it with their physicians.

"PLEASE, I want to warn you about putting the Restasis in the refrigerator. It is a chronic habit we Americans have. Several of the eye drops are unstable at low temperature especially emulsions or those containing certain polymers. There is no need to, anyway as they are sealed under sterile conditions. And it will not spoil."

He also says the same holds true for opened vials of Restasis.

Also, the prescribing info says to store it at room temperature."

Jen, as for your backpacking trip, I would say to just bring plenty of artificial tears as well as any other eyedrops that you use, and possibly get some sort of goggles to wear when it is windy or dry, if that is possible. (if you haven't already left!) I would also say to bring some saline solution in case something gets into your eye (like dirt) and you need to flush it out. You also might want to bring some of that anti-bacterial instant hand sanitizer (like purell) for when you need to put eyedrops in, so that you can sanitize your hands first. Also bring some clean tissues or napkins so that you can blot your eyes after putting in drops. Be careful, and most of all, HAVE FUN!

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