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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 issueÖStorage 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%
ďWhich is thought to act as a partial immunomodulator. The exact mechanism is unknownď.

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 donít 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!

RBolander 09-17-2003 05:24 PM

Now I'm getting discouraged. Toward the end of August I was having more "good" days than "bad" days. However, now it seems as though the scale has tipped the other way, and my eye is slightly irritated every day. It's never as sore as it was three to five months ago, which is a relief, but I thought it was healing. Now I don't know what's going on. I'm still doing the hot compresses, eyelid washings, liquid tears, and Restasis. It's very frustrating.

By the way, if you read this Jen, let us know how you did on your backpacking trip.

Jen2003 09-22-2003 09:48 AM

Hi RB - sorry to hear you're still having problems with your eye. What a drag! Does your doctor know what's going on? I hope it gets better soon. Maybe you're over-doing it with the drops, eye scrubs, compresses, etc.? I have found that the more I leave my eyes alone these days, the better they feel. I just do a warm compress in the morning and at night, and I use that GenTeal Gel right before I go to bed. I'm also taking 100mg of doxycycline a day. I think this medication has made a BIG difference. I like it because it's something I can take orally and not have to put in my eyes. I found out about this drug by reading other posts and doing research via the internet. I actually had to call my old ophthalmologist and ask him to write me a prescription for it! I still can't understand why he didn't prescribe it for me to begin with.?????? Now I am seeing a new doctor and he finally figured out what's causing all my eye problems (I had been to other doctor 10 times and he never figured it out!). He diagnosed me with ocular rosacea and said I should have been on the doxycycline all along! As you can imagine, I was a little upset by this. But now at least I have some understanding of what's happening to me and I know how to deal with it better. Anyways, my backpacking trip went well and I really didn't have any problems with my eyes after all. I was so surprised! I was expecting the worst, but everything turned out great. And to think I almost didn't go. But my family has been making this trip every summer over the last 30 years, so I just had to be there! Glad I took the chance and went. Okay, let me know how you're doing when you get a chance. Bye!

iChrisi 09-22-2003 08:35 PM

I've kinda ignored this thread for awhile, but I was just catching up, and I'm curious about some things.

Jen, I'm not sure if we've shared stories on here before, but I also have meibomitis. I at least finally found an ophthalmolgost I think I'll like. (Ophthalmologist #6 for those keeping track) How long were you on doxycycline before you noticed improvement?

My new ophthalmologist wanted to give my doxycycline on Saturday; unfortunately I'm currently on Accutane as well, and I can't take those two together (something about pressure in the brain...nothing I'd want to experience.) Had I been diagnosed correctly back in February with doctor #1, I probably would've had this under control a long time ago before I started the Accutane.

I'm on Restasis until I'm off the Accutane, because my ophthalmolgost has heard from other doctors that Restasis has helped in some cases of meibomitis, even though that's not its intended use. She's not sure it'll help, but we figured it was worth a shot since I can't take doxycycline yet.

Now my second question is that awhile back, you mentioned that the Merck manual says it can take years to get under control? I guess I don't really have a question, but I've only heard months before. I don't think I can make it years at this point without losing my mind. It's already been over 7 months with no improvement at all.

Jen2003 09-23-2003 05:08 PM

Hi Chris - I remember you from a while back. I'm glad you've found an ophthalmologist you like. Hopefully she'll help you get back on track. Meibomitis is really tough to get under control, as you well know. I think I mentioned to you before that my meibomitis was the result of a reaction to an allergy drop my first ophthalmologist told me to take (Naphcon A). I wish I had never used those drops. :( I was really diligent about doing the eyelid scrubs, compresses, massages, etc. and got the burninng, stinging, lid edema, and dry eye symptoms to disappear. I just knew there was something else going on with my eyes, though, and I was trying to convey this to my doctor, but he never took me very seriously. My conjunctivae were always red and I could never seem to get this to go away, even though I had gotten the meibomitis under control. And my eyes would still get a little dry when I would try to sleep, but NOTHING like when I first got meibomitis. My doctor had me try all kinds of eyedrops (Patanol, Blephamide, Ciloxan, erythromycin) with no results (they actually made my condition worse). Then he wanted to insert punctal plugs and start me on Restasis. I told him I didn't want to do that. I wanted some sort of drug that I could take orally and not have to put in my eyes, but he said that wasn't available. Hmmmmm.... At this point I didn't know that I had meibomitis specifically, only blepharitis. As I did more research about this disease, I began to suspect that I had the meibomitis form. I asked the doctor about this at my next visit and he confirmed that it was in fact meibomitis. I tried to learn more about meibomitis and found out that it could be treated with doxycycline. I called my doctor and asked if he could write me a prescription, and he agreed to do so. At this point I decided it was time for a new doctor. This new doctor was excellent and spent a good deal of time examining my eyes. He again confirmed the meibomitis daignosis, but said it is only PART of a larger disease complex I have. The meibomitis I was experiencing was due to ocular rosacea, and he said I should have been on doxycyline all along. Those drugs the other doctor had prescribed had only made my condition worse! The doxycyline took about three weeks to start working for me. I haven't experienced any side effects so far and it has the added benefit of making my skin look great. I've been on it for six weeks now and am not sure how much longer my doctor will have me take it. I hope you will be able to start it soon. It's great not having to put anything in your eyes. I just hated all those drops! Let me know when you start it. I'd love to hear if it helps your condition in any way. Good luck!

RBolander 09-29-2003 05:02 PM

I hadn't checked the postings for a while and just noticed yours.
My eye doctor has never actually told me any specifics about my condition other than saying that I have (had) blepharitis. I saw him last week and told him that I continue to do everything that I am supposed to do in order to get it under control. Since there has been improvement, he is optimistic. I'm not satisfied with mere "improvement," however. He told me to keep doing the compresses and eyelid cleaning and to use the drops. I was using the Gen Teal Gel at night, but I think it was causing more irritation in the morning. I tried using an ointment, but it seemed to exacerbate the situation, too. Lately, I have stopped using anything at night.
I'm still concerned about the slight sensation under my right eyelid at night, though. The doctor can't explain it, but it definitely wakes me up, and to me it's the most annoying part of this whole situation. When your eyes were acting up, did they bother you at night much?
Oh, I'm still using the Restasis, too. I don't know if it's helping, but I plan to keep trying it until my eye shows major improvement.
The continuing saga.....

KayKay 09-29-2003 05:45 PM


Tell me more about the ocular rosasea. I am a little upset with my current eye doctor. Seen him twice now and was told I have Blepharitis, but the only thing he told me to do was eye scrubs. The last time he said oh your lids look better but the next day they got real bad again. Little bumps along the eye lids and red a burning all day.

My skin is very bad also. Red on the tip of my nose. Looks like I am sun burnt at times. Sometimes my check are very red a sore feeling. Dermo told me years ago I had mild rosasea to us dove soap to keep it under control. My eyes also get worse during my period and ovalation. I blame this on the oily skin.

So fell me in on the ocular rosasea. What was your problems? I still think this is part of my problem

Thanks Kay

Jen2003 09-30-2003 09:52 AM

Hi KayKay - my eye problems began last April when I used an over-the-counter allergy eye drop called Naphcon A. I used this drop only a few times and immediately developed a sensitivity to it. This is when I first began to experience the symptoms of blepharitis - swollen eyelids, red eyes, a burning, stinging sensation, severe dry eyes, and a gritty, sandy feeling (I didnít know I had ocular rosacea at this point). For the first month and a half it was absolutely unbearable. My eyes were so dry that I could hardly keep them open. And trying to get a good night's sleep was just out of the question - my eyes would be on fire every time I'd close them! Extremely painful.

At this point, it didn't seem like the lid scrubs, compresses, massages, etc. were helping my situation. And all the drugs the doctor was throwing at me (Ciloxan, Blephamide, erythromycin, etc.) were making my condition worse. Then he wanted to put plugs in my tear ducts to permanently block them up! I thought this was going a little too far, so I didn't let him do that. I just wanted my eyes to heal on their own, so I told him I wasnít going to take any more drugs. I did, however, continue with the warm compresses, lid massages and scrubs. And I used a preservative-free moisturizing eye drop to help relieve the symptoms of dry eye (GenTeal Gel).

My condition started to SLOWLY improve. I effectively got the dry eye, burning, stinging, and gritty sensation to go away, but my conjunctivae were still pretty red when Iíd wake up in the morning. I knew there had to be something else going on. In the meantime, I learned that I in fact had the posterior form of blepharitis (meibomitis). I did more research on this and discovered it could be treated with an ORAL antibiotic called doxycycline (yea Ė something I didnít have to put IN my eyes!). I asked my doctor to give me a prescription for this, and he agreed to do so. Iím STILL wondering why to this day he didnít just give me this drug in the first place!

I decided to see a new ophthalmologist, one recommended to me by my dentist. This new doctor spent a lot of time examining my eyes and doing various tests. I was VERY surprised when he diagnosed me with ocular rosacea because I donít seem to have any of the facial symptoms of this disease. But he told me (and Iíve read elsewhere) that there are cases of rosacea where only the eyes are affected. He also told me that the posterior blepharitis (meibomitis) I was experiencing was just one of the symptoms of this disease. He told me to continue taking the doxycycline and doing the warm compresses/lid massages every day to keep my meibomian glands functioning properly. He also started me on something called MetroCream (0.75% metranidozole). I put a little of this cream on my nose, cheeks, forehead and eyelids once a day. It is supposed to be helpful for the ocular symptoms of this disease, but Iím not exactly sure why. Since Iíve been taking the doxycycline (6 weeks) and using the MetroCream (1 month), my eyes have cleared up a whole lot. The conjunctivae are not red like they used to be, and I can sleep peacefully thorugh the whole night. Iím so glad I went to see this new doctor. He has helped me so much.

When do you go to see your doctor again? Maybe you could bring up the subject of ocular rosacea and have him examine you for this. If you DO in fact have this disease, here is my advice (what has worked for me): try the doxycycline and MetroCream, do the warm compresses and lid massages for about 5 minutes 3x/day (until you get the symptoms under control), donít do the lid scrubs (this seemed to only irritate my eyes more), use only preservative-free moisturizing eye drops (donít EVER use any thing with vasoconstrictors i.e. drops that ďget the red outĒ), drink lots of water throughout the day and try to exercise regularly. Oh, and I take a couple of those TheraTears Nutrition pills every morning.

I hope you figure out whatís going on with your eyes and that you find some relief soon. I know exactly how frustrating it is! Please feel free to ask me more questions and let me know if I can help in some way.

P.S. By the way, I thought I should mention to you that I havenít noticed any correlation of symptoms with my menstrual cycle.

KayKay 09-30-2003 05:28 PM


I do not see the eye doctor again for 6 weeks. I just started a new job a few weeks ago and waiting for the insurance to go into affect. Then I am going to a dermotoligist. Seems like my eye problems started before the skin problems. My face is very oily and I also have some mild adult acne.

One more question for you. Did you get bumps on your eye lids?

Thanks for answering my post.


Jen2003 09-30-2003 08:13 PM

Hi RB. Just noticed your latest post. Yes - my eyes REALLY bothered me at night when I would try to sleep. They would be ON FIRE!!!! Drove me absolutely crazy. It took me a couple months to get the burning sensation under control. I just stuck with the warm compresses and lid massages, and my eyes slowly got better. Now I can sleep through the night no problem. I wonder what's up with your eye. It just has to get better soon. How long have you been on the Restasis now? I hope it starts working for you. Yes, the continuing eye saga....

Jen2003 09-30-2003 08:25 PM

Hi Kay - I had a few super tiny white bumps on the rim of my lower eyelid (along the inside). My doctor said they were just little blobs of oil produced by my meibomian glands. They could barely be seen - you had to look really close. They wouldn't last there for very long. I've never had any styes or chalzia, though. Is this what you're referring to? What are the bumps like on your eyelids, and where exactly are they?

I think that's a good idea to go see a dermatologist. I'm going to see if my doctor will give me a referral to see one now, too. Although, I don't really have any facial symptoms of rosacea (?). Hmmmm..... I'm just curious to see what the dermatologist would have to say.

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