Update for me - My corneas are doing much better but still dry. My vision is also doing better, I'm not able to read a few lines of the the eye chart. However, I have developed filaments in my eyes which he had to "scrape" off my eyes. At this point the doc still has me doing the restris eye drops 2 times a day (one drop each eye) 12hrs apart and for tonight and tomorrow only Vigamox 4 times a day, ontop of the preseritive free eye drops every 2 - 4 hrs (I choose every 2hrs) and the gel in the evening and Refresh PM ointment before bed. I go back for yet another check up a week from today and then we talk about pulgs.

He did a "Schimer tear" test on me today which provided NO TEARS! Both eyes come up with nothing :( He is sending me for some blood work to see if there is anything else going on with me that could be causing this condtion.

wish me luck for getting better soon!

Hi Amy,

Yea, it has been a long road. It is very hard to concentrate on future when one feels constant pain and reminder that your eyes are dry. I am coming up to 10 months now and I though I would be much better than where I am at.
My eyelids are swollen also. I think my ducts are shut and there is some swelling due to backflow if tears.

I live day by day and thats it. Really no joy in my life. I do have more reflex tears with yawning now. Before there was none except in morning. I guess thats improvement. I still have pain in the white part of my eye. Eye doctor cannot tell me why I have that pain. He attributes ALL of my pain and color changes of my vision( I hope due to light sensitivity) to dry eyes. It is easy for him to say that becasue it ties everything up in a nice little bow.

I think I have inflammation of white part of my eye. I have also started on my own motrin daily as they say that helps. I am thinking also aspirin. Meanwhile I am taking everything that may help- flakseed oil, doxy etc.

It is gonna get better for all of us, right?


Mliknwheat,

I hope you find these posts helpful and also some source of support.
I think the plugs are going to help you alot. I am little suprised your eye doctor didn't start with that. If you have zero on Shirmer test that is not a good news. Which part of the country do you live or outside of states?

SK11: I find these posts usefull for sure, I also like to post up what I think/feel and have learned to help others along the way.... I think the board in general is great!

The plugs from what I understand are to allow your tear ducs to be held open so they don't block your tears. Well I dont have tears to block so I think that's why he didn't start with them.

I live in NY I got some of the best docs :)

MilkNWheat I also live in new york and have been suffering with mgd for 6 months now and am having a hard time finding a doctor who cares and isn't just trying to move me along. I know its alot to ask but if you could help point me in the right direction as far as doctors go I would greatly appreciate it.

Hi,


I also have MGD, I just recently found a great doctor in Boston, he is a MGD specialist, he has equipment to test the oils in your eyes, and he even expresses the clogged glands, which is a little painful, but he did open some of my glands, I live in Maine, and he spent at least 3 to 4 hours with me, I have an other appoint. this month, he wants to express the glands again, he said mine was extremely plugged, so hopefully he opens more this time.

His name is DR. Donald Korb
[ removed ] Boston Mass.
I dont know if I am suppose to post his Phone # but oh well
[ removed ]


[ please carefully review the posting rules - post doctors by name, city and state only ]



Jen

Hey Everyone,

Haven't checked in in awhile and just wanted to see how everyone was doing. Things have been pretty busy since Christmas which is good. Helps keep my mind busy and off of my burning eyes!

Amy, how are you? You sounded a bit down. Hang in there, girl! I've been having some good days and bad days too. Sure seems to be more under control though. When I look back to a year ago...I do see progress. Still can't believe this is happening. Sometimes it just feels like a bad dream and that it will go away.

Has anyone's doc ever said that blepharitis/MGD could disappear for awhile or that our eyes could possibly go back to normal? Maybe it just takes months/years of treatment but there is still a chance. Anyone know?

My eyelids are pretty pink. They look funny. Oh well. I would wear eye shadow to cover it but it really bothers my eyes.

Hope everyone is well.

Jayro where are you in NY?

I live on the nassau queens border so I can go almost anywhere in the 5 boroughs easily!

Anyone with dry eyes have burning pain or visual color changes?
I have pain in the white part of eye and also everything looks like hyper yellow under indoor lights. I am trying to figure out if this is from dry eyes or due to prior injury.

Thanks

OK my blood test came back Positive for the following two: ANA Screen EIA W/REFL IFA and Rheumatoid Factor with a rating of 45. Now I'm going to see a Rheumutologist for furthing testing etc.

Jayro75: Try this place.... A friend who lives out on the island told me to recomend them to you. Mid Island Eye physicians - ***-***-****

Good Luck

Sorry....I forgot the :nono: phone # rule.

[ please carefully review the posting rules - no telephone numbers -
- post doctors by name, city and state only ]

hi everyone.. ive read through some of the posts so im sorry if this has been covered but i couldnt nearly read through all of them.. and im sorry for all of you suffering with dry eyes..
i am 21 and have been trying to get contacts for a while but soft lenses always dried out my eyes and i couldnt leave them in.. i feel that since ive tried so many now this has caused my eyes to be dry without contacts in and while wearing glasses.. its not to the point where i cant sleep..and i havent been diagnosed with any disease or anything of the sort.. i just today started trying gas permeable lenses which apparently are not supposed to dry out your eyes b/c oxygen gets through, and what not..but after only trying them for an hour my eyes felt very dry despite the fact that i know there is an adjustment period with these types of lenses.
my main concern is does anyone know if trying too many types of contacts have caused my eyes to just dry up? does this mean i probably cant wear contacts now? im trying not to get down but boy is it tough not to.. i dont mind wearing glasses sometimes but i really hate wearing them all the time.. ive tried too long to give up, but im not sure if the dryness is a normal occurrence of gas permable lenses or basically my eyes are just dry and i wont be able to ever wear any contacts. if anyone could offer any insight that would be great. my doc swears these shouldnt cause my eyes to dry up but in my opinion my eyes are naturally dry so what does that mean?
sorry to blab but i thought maybe some of you might know more about this. just to add, im hoping to switch dr's soon but i dont knwo where to begin to find one but this one just isnt cutting it. thanks guys :wave:

It's good to see you again.

I am of the opinion that experimenting with different contacts does little to cause dryness. I think your eyes are just dry. I am thinking you may be able to wear contacts in the future if one of three things happen:

1) You solve your dryness problem, obviously.

2) A contact is made with a VERY high moisture retention.

3) A drug is released that dramatically helps the tear film. So far Diquafosol ,which is still in clinical studies, looks the most promising.

Has your doctor explained to you what form of dry eye you have?(aquaeous, evaporative, mucus) and what did he say the cause was?

Hi Montgum, nice to see you too thanks for replying!! I feel like I just ask the same questions over and over, but I definitely appreciate the help youve given. The funny thing is, no doctor has actually told me i have dry eyes. I kinda just diagnosed myself haha. It's not to an extreme degree or anything, but over time I have just noticed that my eyes never tear.. I rarely cry..and whenever I have tried different types of soft lenses, my eyes would instantly dry up..which is why I have started to try these gas permeable ones. The technician that helps me told me that I should have no problem with these and that they should not cause my eyes to dry, but I do have to admit I really don't like the doctor I go to because sometimes he doesnt even see me! It's just the technician..sometimes I even think that they dont believe me when i tell them that the contacts don't work for me. That's a whole other story though, because I want to switch doctors but this doctor is supposed to be "really good" and I live in New jersey and really have no idea how to even find a new one, or how to know if one is good. The other thing is that i do know the gas permeable lenses have an adjustment period, but i dont even really know what that means! i really wasnt told what normal adjustment symptoms are so its hard for me to distinguish if what im experiencing is normal or if my eyes are hating me and im going to cause damage to them. I think it all comes down to that i need a new doctor!!! it just sucks cuz ive been through so many. I hope that those new products will come out and be helpful, although no doc has ever prescribed anything like that to me..except these weird vitamins hydroeye that i refuse to take becuase i feel like they caused my face to break out. Perhaps I need to get my eyes tested to see if they are dry or what. there is a machine that does that right?? Ok sorry once again for blabbing, but thank you! :wave:

I am kind of baffled why your doctor hasn't tested you for dry eyes yet. You definately need to consider going to a new doctor. Maybe he thought testing wouldn't help I don't know, I dont know the protocol for dry eye patients. One of the tests is expensive(but not super), I think, that could be why.

I doubt you will be hurting your eyes by waiting for gp lenses to adjust. If I were you, I would give them two weeks to adjust and no longer.

I've tried the hydroeye supplements too. I think they are for old people who's bodies don't digest oils very well.

What you need to do is go to an Ophthalmologist and get two tests done. A tear-break-up-test (TBUT) and a schirmers test. Demand them. If you have a low TBUT then you need to consider taking Doxycycline and warm compresses. If you have a low schirmers you need to consider take artificial tears or Restasis if it is really low.

I would say more but my friend is online and I don't talk to him much. I will be back later to read your reply.

Take Care,
Mont

Hi Mont!
I dont really understand either, but part of me feels like this is a new thing and that is why I was thinking that maybe it was caused by trying too many contacts. I don't know much about dry eyes, I just know that my eyes feel dry with contacts in, and without contacts they feel dry but not to the point where it is uncomfortable.
I agree that I think I am going to just try the GP lenses for a little bit, and just see if there is improvement within a week or two.
Thank you again for your help, and Ill def keep you posted. Maybe I will read through past postings to see if I can get a better idea of what "dry eyes" actually is..and what other symptoms go along with it. I just really really hope these contacts work! If not, im DEF switching doctors because enough is enough. Thanks mont! :wave:

Hi Muchacha
I have have been plagued with dry eyes since last May. I have not been able to wear contacts comfortably since then. I miss them horribly. Please let me know if and when your eyes adjust to the gas permeables. I used to wear them a blue moon ago. When talking about the best contact lens for dry eyes, I had always heard about other soft lens brands that don't absorb water, but never GP's. Interesting!
My entire story is on this thread. I have ocular rosacea and have found some help with the RX Doxycycline, but to this day I have no idea if my problem is aquaous deficiency or oil or mucin. Why can't Drs figure this stuff out?
Keep us posted with how you are doing. Mont, how is your MDG these days?

Calibug- Hey girl, I'm still here. Trying not to think about my eyes so much. I saw your post on the other thread. How have your eyes been? Burning? I must report that my eyes don't seem quite as red or pink on the conjunctiva. I guess that is good. Still I notice dryness at certain times of the day and night. I wish I had your watery eyes! LOL
That is all for now. Do you think we will be on Doxy forever? :yawn:

Amy

Hey Amy, hadn't see a post from you in awhile. I was hoping that you weren't getting too down with this stuff. Glad to see you are still around! Eyes have been magnificent for two or three days now. How long it will last is another story!

I am so incredibly upbeat and happy when my eyes aren't bothering me. Isn't it nice when we can think about something else than the burning!! I can't believe how much I took all that for granted. I can only imagine how much worse it must be for those that have much greater problems.

I've tried something different lately. I try to be much more careful when I clean my eyelids. I have changed to just using baby shampoo and for at least one of the cleanings, I just use my fingertips. I think I have been too agressive with the cleaning and I believe it was further irritating my eyelids. I was trying to be careful but now I'm even more.

So Amy, do you not have a lot of tears when you cry, etc...? I really think the Restasis helped me. Have you given that a try? It can take months before you get some positive results. I know once I went off of it and after a few weeks, my eyeballs felt so much drier. I went back on it and slowly I felt the dryness disappear.

Well, hope you are doing alright. I sure hope we aren't on doxy forever. I just think it may take months, maybe even years, of treatment to get rid of this stuff or, at least, get it under control. My guess though. I still don't think we are doomed forever. Have you heard anymore on the Diquafosol? Anyone? I think someone mentioned it was possibly coming out in 2005.

Take Care!

Hi, I'm a new member. I've had dry eyes since 1993 from taking accutane. This medicine affects the meibomian (sebaceous)glands but not the lacrimal ones. I noticed around 1997 my eyes were extremely dry, almost unbearable. Since then they have regained some of their moisture. This can be a really uncomfortable condition. I'm interested in research showing that androgens like DHEA in eyedrop form can rejuvenate meibomian glands at least in rabbits. This came out of research that showed that anti-androgen medicines like Proscar and Propecia were drying out patients meibomian glands. I have only gone to the eye doctor once (11 years ago) for this condition because he told me it was just old age (I was 24 then). I know someone on another message board who says that DHEA is the best thing they tried and they tried everything. To get the drops I would have to go to the eye doctor and I just don't trust them. Right now I take Theratears maybe every hour on a bad day and sometimes not at all on a good day. Also, Amy, occular rosacea is a meibomian gland not lacrimal gland condition (at least that's what I read).

Hi Dennis!
Welcome aboard. I am sorry to hear you've been dealing with dry eyes for such a long time and without a Dr's help. (not that they can ever seem to do much for us :rolleyes: ) Your news about DHEA is encouraging. I'd like to hear more. I guess my situation is MGD based, but my Dr said that it also can inhibit the way the lacrimal gland functions. That would explain my slightly low schirmer scores, I guess. Have you tried Doxycycline at all? It helps some, but I certainly don't want to live my life on it. Have you heard about Diquefosol? eye drops that are supposed to be out within a year or so? Many of us are keeping our fingers crossed. I don't know what it is exactly, but it is supposed to help with oil and mucin production.
Do you do any warm compresses or lid massages? One more question......did your dry eyes come on suddenly after the accutane or gradually. Mine came on suddenly. I remember the day - May 16th, as I am coming upon the anniversary of that awful day it all started. It came on instantly after I cleared up a rather bad case of pink eye. To this day, I don't know if it was the severity of the infection that initiated the ocular rosacea symptoms. But, living with this is NOT fun.

Thanks for posting.

Amy

Hey Calibug-
I'm just all over the board today, aren't I? You can always tell when I'm having a bad eye day because I come here because it is all so overwhelming.
Yes, I tried the Restasis quite awhile ago, (maybe 9 months ago) It seemed to dry my eyes out further. It always burned too. I gave up at 6 wks. Maybe too soon. I may try it again- who knows? I go back in 2 wks for my 3 month check. I think the Dr was hoping I'd be a lot better by now. Me too. I mean there is some progress, but I think I just want my quality of life back. I hate wearing glasses and living on eye drops day and night. Some days are better than others. Oh and yes, I do have an abundance of tears when I cry. That part is okay, but I don't seem to have the watery eyes as much when yawning or say, if I go into a smoke filled room, my eyes used to just water, now they just burn. I can cut a onion with no watering anymore.

It is good to hear you are doing well. That is great. I wish we could hear from that "Jen" who overcame this and how she is doing. She said she was back to normal. Now wouldn't that be nice?? Jen, if you're out there....I could use some more encouragement. ;)

Amy

My dry eyes were pretty much confined to when I woke up while I was on accutane. They then got worse for 4 years. Then the last 8 years they've been improving but still very dry. Warm compresses help as does lots of fish eating. I don't trust the medicines or supplements since I don't think all side-effects are known. Since I won't take medicine there is not much use going to the doctor. The DHEA is a little different since it is in our own bodies. I might be willing to go to the doctor to get a prescription for it. But again, I hate going to doctors period. It's like a phobia. Maybe that also came from the accutane. Some people says it affects the brain. Anyway, I got so used to dry eyes that sometimes I hardly think about it, even when they're burning red. See you.By the way, I wrote down that pink eye medicine you took. No way will I take that if I get pink eye.
-Dennis

Hey Amy, I know what you mean about the bad days. Frustrating as all get out. You may want to think about the Restasis a little longer. I think it can take up to 6 months to have the most positive effects. Your eyes would probably adapt to it after awhile.

I just posted on another thread so I'll make this short tonight but I think I've been too agressive with the cleaning. I have been cleaning my eyelashes and margins while keeping my eyes closed this past week and my eyes have been so good.

I reread Dr. Nase's advice and he said to clean while keeping your eyes closed. I've always kept them open and really cleaned the margins as close to the eyeball as possible. He says that the eyelids are extremely delicate and you should keep them closed. Interesting. We'll see...but maybe I was aggravating the situation by being too agressive.

How do you clean your eyelids?? O.k. enough posting tonight! :-)

I have suffered since 1982 with dry eyes. The last few years have been the worse. I have numerous corneal abrasions from this syndrome. I have tried doxicyclene and every drop on the market including restasis and Dr Holly's drops (I was desperate). Now I am seeing a top research doctor from one of the most prominent eye research centers in the world, Schepens eye research institute. He started me last year using antibiotic ointment at bed time and wearing swim goggles. The goggles keep the moisture in your eyes. My dangerously severe abrasions became manageable within a week. If you can keep the goggles on, it really helps. I have plugs and use refresh celuvisc as needed. I am much better.

What may help you people is a new eye drop that my doctor helped develop. It is called Soothe and is available on the internet or from any Walgreens or CVS by special order. It has been a miracle eye drop for many. Call this toll free number [ please do not post telephone numbers - use brand names only ] or go to [ please do not post commercial websites - use brand names only ] for purchasing. Unfortunately, the drops did not work for me. Hopefully, it can help some of your suffering. I know lots of his patients have had success with it.

Thanks for the recommendation Gustone. I may try the Soothe Drops. You certainly aren't the first person that it hasn't worked for though. I haven't heard as many positives as I had hoped. Still, it might be worth it. I'm glad the goggles are working for you and that your corneas were able to heal. I also notice I feel better after using an antibiotic ointment for a few days. I use Bacitracin, but my Dr told me only to use it for about 2 days at a time so I don't have a reaction to it. Do you use it repeatedly? Please continue to share with us what your Dr at Scherpens (sp?) recommends. Sounds like you have a good one.

Calibug-I clean my eyes with Cetaphil (just a tiny *** worth) on two round wet cotton pads. (one for each eye) I gently rub with my eyes closed for about 10 seconds and rinse with warm water. This also removes what little eye makeup I wear. It works well. I once tried the Q-tip method with eyes open. Never again. Too irritating. Hopefully a more gentle scrub will help you in the long run.

Since my eyes have been bad the last week or so, my anxieties have surfaced again and some depression. Obviously it effects me to some degree in my subconscious because I have been having dreams about bad things happening to my eyes. I guess you might call it an overreactive imagination. I've been thinking about ordering Dr Nase's book, but I'm kind of a cheapie. If there is only a small portion on ocular rosacea than it might not be worth it. I am interested though in hearing the stories about people who have gotten their rosacea under control without drugs. Kind of like healing the inflammation from the inside out. I've considered seeing a naturopath, have you ever?

Well, have a good day all!
Amy

What I heard about the Soothe drops is that even though they aren't nearly as refreshing at first and in fact irritate a little, that over several weeks people notice improvement sometimes great improvement. They are intended to prevent evaporation from eye surface by adding some lipids to tear film.

I have considered seeing a naturopath...guess with all the other expensives with this stuff, I've put it off. I so much prefer going the natural way...that is why is was so hard for me to go back on the doxy and even continue with the Restasis. I'm always concerned about using this stuff but my eye situtation scared me enough to have some faith and take the medicines.

Thanks for the cleaning tips. I was very careful with my eyelids again and wow, it was such a great eye day. The eyeballs looked so much clearer and white!! I know many times my eyes felt pretty much o.k. but after cleaning them they flared up. I really was being too agressive. Glad to know that now. I'll continue being careful and see what happens. I know all too well though about getting hopes up that this stuff is past me.... probably just having a calm week. I count my blessings though.

Hope my positive news helps you some to keep your chin up. We can have some good days with this stuff. I still really feel that we'll turn the corner one day. I sure understand what you are feeling....Sometimes I can get really down with it...I'm much better about it now though and am learning to deal with it. I think it takes time to adjust and accept it...

Dr. Nase's book is very good but if you don't have a lot of the facial problems it might not be necessary. The book has a lot more info about the facial rosacea than the ocular...but there still is quite a bit of info on the ocular issues. He does go over the various treatments, cleaning, etc... with ocular rosacea and he does talk about various vitamins you can take. I'm VERY glad I got it. Realized how careful we need to be with our skin...nothing harsh, watch out for the sun. I didn't realize that certain skin products could actually make rosacea worse. He also covers various triggers to watch out for. It is definitely a good book.

I'm going to try the Soothe eyedrops. I checked the website and it apparently does help the lipid layer. Is it the same makeup at Refresh Endura though?? I'll have to check the ingredients... maybe they are different. Let us know how you are doing...hopefully your eyes will calm down in time for the weekend.

Have a good weekend!!
Calibug

I used to be real nervous about it too. I figured that they were so dry that it had to be damaging them. For quite awhile they were as red and burning as this *** :o ,I thought I would go blind. But 12 years later, my eyes have no damage at all. The nervousness about it makes you think about them more and it seems to me it makes them even dryer. It's like a cycle and it drives you crazy. Then you lose sleep and they get even dryer.
There are dietary changes you can take to improve things. I focus on hormones and fats. I consume lots of fish and alcohol. Fish helps improve quality of secretions, alcohol helps to boost androgens. I try to avoid things like green tea which blocks androgens. If you're female avoid any birth control or anything that elevates estrogen especially hormone replacement therapy. If you're a man avoid any drugs that treat hairloss because these block DHT, which is the most important for eye lubrication.

This thread has been edited many times. There are plenty of reminders to read the posting rules. Use brand names only. Never post any kind of commercial contact information. Please cooperate to avoid the loss of your website privileges. Thank you.

hello, I am 22 and I live in New Zealand. I decided to post this information because I consider it important, and could be beneficial to others, and I could learn from others too.
late 2003 i found that my eyes seemed to look red all the time, so i would often use Visine.
in April 2004 i went to see an eye specialist. He said I had blepharitis, and that if I really had to use the visine, use it no more than 3 days apart (Some days I had used it twice a day). Ive only used it once or twice since then, because it leaves visible blood vessels on my eyes. The vessels are still there to this day, but I hope they'll go away in the future.
I'm guessing that my meibomian glands got dried out from the roaccutane i was on back in 2001. The last time I was able to cry tears was in 2002 (when i failed my full drivers licence). Since then I havent been able to cry tears. I wonder if I'll be able to again in the future with the right treatment.
my doctor also told me that I had dry eye, and "irreversible UV radiation damage where my eyes have yellow patches". I'm not able to see the yellowness myself. He was using a telescope. I'm guessing that this could be from using CRT computer screens, since they radiate UV rays, don't they? I wonder if getting a flat lcd screen would take away any eyestrain, or one of those anti-glare screen filters for my CRT.
Since September ive been using TheraTears Nutrition. People have commented my eyes look more moist, and reflect light better now, but the redness is still there. I really don't know if its worth my while since I'm ordering them off the net from Arizona, but I will keep on them for now.
In November, I started using minocycline once a day (I'd used it before for 1 month but Ive since read it can take 3 or more months to work, so Ive gone back on it).
and since late december, Ive also been using refresh liquigel in the morning and night(i know its got the preservative Purite in it, but I like it being in a bottle). Ive often wondered if allergan endura eyedrops would be better, since it builds up the mucin (?) layer, I believe.
Ive never really experienced any pain or discomfort with my eyes. Ive never noticed red eye lids. Its only the redness in the eyes that really upsets me. I hope that in time, my conjuctivas will get whiter, and the dilated blood vessels will reduce substantially.
my appearance means a lot to me. Its where I get my confidence from.
In November, I saw a new eye specialist because I didnt want to wait a few weeks for the other doctor. This doctor told me to never mind the lid scrubs, or warm compresses (using warm potatoes to secrete the irritating sebum, which i had been doing). He said there was a new technique that had been found. You run your index fingers across your closed eyes quite hard across the eye lids from the nose side to the other side.then do the same with a warm damp cloth. The first wipe is to dislodge the debris from the lids. The second wipe is clean them off. I have never been able to see any benefit from any type of compress or lid scub. My doctor never told me to still clean my eyelids with a warm flannel but I do so anyway, just in case.
quite often i go to meetings. they have air conditioning there and fluorescent lights. My eyes are very red afterwards, but I hope in time with my treatment, they wont get red. They also get red from saltwater when I go for a swim.
Heres some good news though, in the last month, Ive noticed that my redness goes away quicker now after I leave the meetings or saltwater. maybe the quality of my tears is improving, and/or the quantity.
So 2004 was a very down year for me because of the eye redness, I didn't feel comfortable around anyone. But I hope the redness will get better in the coming months. I will post again if I have any good experiences, that might help someone.

sleek, I took the same medicine in 1993. I noticed my eyes got worse for 4 years and then started to improve. Alot of others have noticed this pattern. The stuff acts on your system an average of 9 years. Since you took it in 2001, 2005 might be kind of rough for you. I noticed the most significant improvement about 8 years post therapy. I know one guy who had disabling dryness and now has almost none 10 years later then for some it persists for very long. My problem was more the feelings of dryness and sometimes burning than the redness. But, yea, sometimes they would be embarassingly red. I think people thought I was stoned. And about the crt screens, I don't think they emit any UV at all. The main source of UV is the sun and I would suspect just about everyone has some UV damage to their eyes. I wouldn't worry about it in the least. I used to take Visine. I think it's the worst thing. They would get redder and redder and I would have to use more and more. Now I use theratears in the bottle. That last thing you said about not being able to cry was pretty weird. I haven't cried in maybe 2 years but if I remember right they were pouring out just like when I was a baby.

well I saw the new doctor today and he sent me off to have more blood work and an X-Ray done. He's strongly looking into the fact that I may have arthritis and Sjögren's syndrome. So we shall see what the blood tests say when they come back. I feel with all the things he told me and I have read on line that I have both as well.

Hello everyone,

I been reading everone's post and I am going to add few suggestions which I have tried.

Alimera sciences makes Soothe and you could contact them directly for sample bottle. It is expensive about $13 per small bottle. So get the sample and try it. I sometimes use Bion tears first and then use few drops of Soothe. This seems to prolong the mositure in the eye.

I maybe hoping for miracles but I felt lecithin helped. I take 2 of those and also 2-3 flakseed oil daily.

Milknwheat, since yours is rheumatological related you may want to try chondroitin sulfate with collagen. I have been taking it in liquid form.
It was very interesting when I read that the eyeball and the eye socket is made from similar structure as your joints in knee.

My eyelids are so swollen that it feels like heavy bag. I can see the edges of my eyelids are edematous with fluid. I think my ducts are shut and cannot get the water part of tear to flow.

Hey Steve-
Good to hear from you. I was just thinking about you. What is Lecithin? I have been taking flax and fish oil. Is this Lecithin a nutritional aid? I will call for a sample bottle of Soothe. Has it helped you along with the Bion tears?

Amy

Hey Amy,
It is LUTEIN not lechitin. I read that it helps with tear production. I am not sure why. I tried one day and I felt it helped. It could be just placebo effect. You could get it at in any grocery store.

I think Bion tears was slight better than other tear drops(relative term I guess in minutes). It seemed more comfortable. I decided to add few drops of Soothe on top of it. The moisture seems to last longer. I think Soothe is made from same stuff found in ice cream. It is suppose to harden on top of your aqueous tear layer.

I hope this helps. Keep me posted!

Steve

Hey there Amy!

Saw your post on the other thread...thought I would just post here. It definitely sounds like you just have too much oil. That is how it was for me and just having that imbalance will compromise the tear film. As far as the lack of tears, what were your schrim. test results?? Have they done that for you?? Measuring that might give you an indication if you also have some tear gland supression. You mentioned that you have an appointment on the 15th. I would definitely tell them you want another schrim. test. They may not want to take the time but remember you are the customer! Don't let them rush you with the appointment. I would write down all my questions and make sure I get them answered. You are paying them not the other way around.

My oil thickened up after having too much oil more months. Now it is more like butter than oil....Sometimes my oil is flowing well and other times it thickens and causes my eyes to feel real dry. I was doing incredibly well for quite some time now and then two days ago it hit! Really horrible!! I also started my period so I still think somehow hormones have a role in this. They are slowly feeling better and I think I'm getting over it.

I went to the dermatologist this week for my yearly checkup and he was very pleased! I wish I could control the eyes as well as I have the skin. I guess it is just more concentrated in the eyes for me than elsewhere. I know some people can have a lot of skin issues...glad I'm not dealing with that on top of this. He said I should try Elidel cream...usually used for Eczema but apparently has a anti-inflammatory effect on Rosacea. It isn't a steriod so it is safe. Steriods are really really bad! He said it was safe to put on the eyelids to calm them and so I tried it and wow did that burn. My eyes really flared up too so that may be why they got so bad a couple of days ago. Who knows...I probably should try it again and try to get use to the cream but I'm not that couragious right now!

I honestly would give Restasis a try again. There is initial burning but your eyes should adjust after awhile and it really may help turn things around for you. You have to be patient with this medicine though since it can take awhile for it to start helping. I barely feel it at all now when I put it in and it seems to help lubricate my eyes. I do also feel like I have more tears.

Well, I don't see my eye doc until beginning March. I look forward to it...I have some questions of my own... ie: makeup and bacteria, extractions.... I think I'm going to try to talk him into extracting the oil and seeing if we can help these oil glands function better. We'll see what he says. I know Dr. Tseng apparently does it and that is still an option but I really would love to avoid the expense... I've always got that in the back of my mind though....

Hope you are feeling somewhat better this week. I know what you mean about getting you down. I got so upset these past couple of days...it can be so depressing...I worry too about it not getting better but then usually a few days later, they are. We don't have a choice though...I just try to change my thoughts and distract myself from the discomfort...or should I say pain!

Take care and let us know how your doc appointment goes...take advantage of the time to get all your questions answered!

Calibug

Calibug-
You are so sweet and knowledgeable. Thank you for trying to help me. The last two weeks I have been in "eye h_ _ _ " I don't know what the heck happened. My lid margins became bright red and very sore where the lash follicles at the ridge and swollen too. Warm/hot compresses do not help at all. My eye surface along with the surrounding lids just burn constantly. I have to blink about every 1 1/2 seconds on average due to drying or irritation. (whatever the heck it is) Even closing my eyes is uncomfortable due to the sweep of my lids over the eyeball surface initially. Nighttime seemed more comfortable because I could just keep my eyes closed until it got so bad last night that my lids stuck shut again. I got up in the middle of the night and used the Bacitracin (antibiotic ointment) Dr didn't want me to use it very much because of irritation and toxicity. But, it seems like I have to rely on it every 2 to 3 wks. I'm not even sure why? Is it overgrowth of bacteria? I'm not even sure that was a problem for me. Or maybe perhaps it is just the greasy lubricant that helps me for a few days an so I'm drawn to it. I was trying so hard to hold off using it, but I felt like a junkie in the middle of night- desperate and at my wits end.

My face has been flaring badly too. I am so discouraged that I don't feel that the doxy or the sulfa drug is working at all. After nearly 6 months on doxy- when it begins to not be effective anymore is very crushing. My husband an I booked a 7 night caribbean cruise in two months (first time anywhere without the kids) so this is a biggie for us. Of course when I booked it I was feeling much better and excited about it. Now, I can't even imagine being in hot mexico and dealing with my eyes. It is so depressing. Now this also leaves me with not enough finances to get down to see Dr Tseng (at least at this time) Not sure I've done the right thing. I really wonder if he could help me anyway.

I will ask many questions at my appt. Thank you for the suggestons. I'm sure I have a 10 mintue slot for an appt time. :rolleyes: I drive over an hour to get into the city so he better take the time. I do want a schirmers test again. 7 months ago they were 15 and 9. I think they are worse now. My eyes never water except in the AM after about7 or 8 yawns. They are so scorching dry when I wake up that my body just tries to flush my eyes with any tears possible to combat it. I wish there was some magic treatment. I will ask about diquafosol too and Restasis. I still have 3 month supply here at home. The stuff is expensive and I'm sure it will expire soon. I still really do not know if this is oil, mucin or what. I wish he could measure it all out for me. It is strange though that bacteria could play a part. You know, for 30 years- I splashed water on my face, washed my face very lightly- just enough to remove my makeup, wore contacts and wasn't particularly scrupulous about their cleaning and care. Never had a problem in my life!! Now, here I am avidly cleaning to keep everything sanitary. I am going to try to pick up some of the disposable masacara wands at the beauty supply just to see if that helps. I used to go months and months at a time on the same mascara bottle. Never a problem before. Now I am such a mess!!

Interesting about the Elidel. .... I have some of that stuff for my son's mild excema. I guess I won't try it on the eyes though. :eek: I sure have noticed a pattern with stress though. My face gets quite red, but that is usually initiated by my eyes flaring first- which causes me the facial stress reaction. If I could just fix the first.

I will try to keep checking the boards, but I was lucky to get on today because my computer has been going wacko. If I am not around that is probably the reason, otherwise I went and stuck my head in the sand. :eek:

Amy

P.S. If anyone has any other advice or similar situations to share, I'm all ears.

Amy, sounds like your rosacea symptoms might be just really flaring up and causing you all this pain. I feel so bad for you...and everyone else with dry eyes/mgd or blepharitis...or whatever causes you pain. This stuff is horrible... I'd say get every little bit of info out of your doc as possible. I wish we could get to the root of the problem and get this stuff under control.

Don't let it discourage you about the cruise...how funny...we are taking one as well...Western Caribbean in April. I'd love to tell you where and when but I hate posting personal info on the web. That would be too ironic to be on the same one. :-)

I talked to my doc about it though and he said to make sure to cover up with lots of sunscreen....not only for the Rosacea but also because of the doxy. While you take doxy, you can become more sensitive and less protected to the sun. He told me to use Total Block spf65...there is also Cotz spf58 and LipCotz spf30+. The latter two are with titanium and zinc which is better for rosacea skin. I think they call them physical sunscreens instead of chemical sunscreens. The chemical kind burn my face. I haven't tried any of these though yet. He just gave me a pamphlet on it. I used a couple of really good creams last summer at the beach and they worked out well too. I'll get those names for you.

Don't let this keep you from going on that cruise!!! I refuse to let this stuff keep me and my family from opportunities. I know you are uncomfortable and it can make even vacation work...but don't give in. I personally am not going to let this stuff keep me from having a good time. I even plan to snorkel! Will probably burn the eyes but too bad. I tried the "just stay home" routine for awhile... it made things worse and caused me to worry even more about my eyes.

He also told me to be aware that on the boat, even if you wear a hat, the sun reflects off of the deck and back under the hat and gets your face, so wear lots of sunscreen!!

Something you may want to consider as well is getting some really good goggles for swimming. I have a pair that also protects from UV light since my eyes are extremely sensitive to the sun. They worked great last summer. Also, the ocean water doesn't seem to bother my eyes like at the pool.

You may want to find out more about that Bacitracin and make sure that isn't contributing to the problem. I don't know but some meds can have a rebound effect...I would double check just to play it safe.

Hang in there, Amy!

Hey everyone,

I got retested for Shirmer. Not a good news. I was shocked actually. It was zero. I think it was done properly this time. I knew I could not have had 10 and 13 as I was told first time. I just don't make any water part of tear.

It is interesting that even though Shirmer was zero my eyes would be even drier if it was not for Restasis.

I just miss the days when I would wake up and feel the soft gooey eyes. I would get in the shower and wipe way the morning dew before letting the warm water hit my eyes. I can only dream about it now.

I guess I know now that it is water part of my tear that is missing mostly. I am still hoping that Dr Tseng can help some how. I have appointment with him. I will keep you guys updated. I am just hoping for a miracle at this point.

Everyone hang in there.

Hey Sk11 (Steve, right?)

So sorry to hear about your tear level. Ouch...zero. You have punctul plugs right?? Did the doc say that this could reverse itself? I guess you have already been tested for any autoimmune stuff...must be just the damage that happened to your eye(s).

Glad to hear you are going to see Dr. Tseng. You will definitely have to keep us posted. When do you go? Hang in there. I really feel for you.

Calibug

Hey Calibug,

I am going in few weeks to see Dr. Tseng. I am hoping he could help but I am fearful that he has nothing to offer. I have plugs too. My eyelids are so swollen all the time. Some of the tears are being held up by scarred tear ducts.

At least he will be doing some more testing. What was your shirmer results?
I maybe the first case with this problem. I will keep you posted.

Steve

OK it's offical I've been tested and it's POSITIVE I have Sjögren's syndrome. This is why my eyes are dried out and I'm having all these problems!! I have an Rx to fill that I will take 4 times a day every day and I have to visit the doctor 1 time every 3 weeks.

SK11, I'm so sorry your still in limbo. I wanted to tell you I did the shimmer tear test and also scored a ZERO for BOTH EYES!!! So I can say to you "I feel your pain" and mean it 100%. I KNOW WHAT YOU ARE GOING THREW! As others have said, you need to be check for autoimmune disorders. Better to be safe then sorry!!

GOOD LUCK TO YOU!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~
Info on what I have:

Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. Sjögren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans. Nine out of ten patients are women. The average age of onset is late 40s although Sjögren's occurs in all age groups in both women and men.

Calibug: Thanks .... I'm happy to know what I have and why this is happening to me. Thank GOD it's not lupus or something along those lines... You know!!!


I just wanted to THANK EVERYONE here for all the posts they have made and to to everyone that has replied to me. It's very nice to have such a helpful board and full of people that can honstly say "hey I've/am gone/going threw that" type of thing.


I'll keep you all up to date with how my treat ment goes... I see the doc. every 3 weeks for a check up / tests and what not...

:) MilkNWheat

This thread has been edited many times.

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Please cooperate to avoid the loss of your website privileges

MilknWheat,

I am glad you have found right diagnosis. It will help you long ways with treatment. How long have you had the dry eyes?

I think severity of your dry eyes is similar to mine. So I want to ask you some questions about any other symptoms you may have. I have other symptoms and wanted to see if you have same type of symptoms.

In other words, I am trying to find out if my symptoms are due to dry eyes or due to my injury.

Do you have swollen eyelids or feel like your eyes are swollen?
Do you have any vision changes where everything is in yellow overcast?
Do you have pain over the white part of your eyes?
Or do you even have any other symtoms except dry eyes?


Thanks
Steve

Steve,

I don't know for "how long" I've had the symptoms for because I didn't think anything of anything until Dec. 26th, 2004. That night my eyes got so dry I had to take my contacts out and wear my glasses and woke up with pink eye for the 3 time in my life in a 7 month span of time. I went to the optiomatrist and he said my eyes were pretty dry and to use drops and come back in a few days. I freaked out and went to the opthmaotrist and found that my cornea was so very tired out that it was causing my vision in my left eye to be VERY VERY bad! He sent me for some blood work and then sent me off to the rhmatolighist (sp). I didn't see all the symptoms that I had until they were "pointed out to me" or asked about... so here I'll list them for you:

Dry eyes
Blured vision - no dis color but pain in eyes/wanting to close them from cornea being so dried out.
Dired out cornea
ZERO tears being made - Shimmer tear test
pain in joints - ie. fingers, feet etc.
dry mouth
hard time sowlling
eyes burning
senstivity to light (major right now)

I think that's it....yes my eyes/lids were red/and swollen because they were so dried out!

I hope my info helps you out some... I hope yo have had blood work done and if not maybe you should do that!

MilknWheat,

Thanks for info and reply. I am sure it has turned your life upside and down.
What is your prognosis? Is it going to get better?

I guess from your description you have dry eye symptoms but not much pain or much visual changes. Is that correct?

Keep us posted.

Thanks
Steve

Hey Steve!
I'm still here. I wasn't able to log on for awhile. :rolleyes: Anyway, let me say that I was shocked to hear your Schirmers scores. Did they do it with or without the anasthetic drops beforehand? I am going to try and have mine redone tomorrow at my Dr's appt. Let me say that I am so happy that you'll be seeing Dr Tseng soon. When exactly is your appt? I'm so anxious for you to see him. It sounds kind of wierd, but I have this feeling if anyone can help you- he can. If I lived in FL (as you do) I would be there in a heartbeat. For myself, I am seriously considering it withing the next few months. Please do share your experience with.

I'm still dealing with the dry red burning eyes. Still worst at night. Hang in there!

MilkNWheat-
I am glad you have an answer to your symptoms. I hope the treatments do provide relief. Glad you are here to contribute to this dry eye suffering thread.

Hey Calibug! :cool:

Amy

P.S. Lulu, if you are out there somewhere, please respond. I'd love to hear how you're doing.

Hey Amy,

Yes it felt like a punch to my mid-section when they told me about the schirmer score. Why it took 10 months to get this is crazy. I really moped around for awhile after that. Anyway I am going this friday to Miami.

It is just amazing that not one eye doctor really cares about our conditions.
I guess they are mostly interested in lasik eye surgery and don't want to deal with semi-though cases. I tought they went into medicine to "help people". What a bunch of bull. ESPECIALLY THESE EYE DOCTORS!!!!

I think you should try restasis again. I am using it right before bedtime and when I wake up there is less dryness. I think max effect occurs around 6 hours after you use it.

I will keep you informed after the visit Dr Tseng. Wish me luck.


Steve

Hi all!
Here I am back from my 3 month appt. I wish I had some bright news, but I don't. My Dr didn't even think a Schirmer test was in order. It's just not fair. He's not the one suffering with dry eye, is he? My eyes have felt crappy for 3 wks but today they were feeling better. He said they looked dry and red. Duh! He also said for the first time that my meibomian oils looked milky instead of clear. Wants me to stay on Doxy indefinitely at this time. All this time I don't know if it was doing any good.
We talked about my history with plugs as he suggested the punctul plugs. I had told him before that they were slightly irritating and that they fell out after 4 days many months ago when I was under another Drs care. I also told him how they did NOTHING for me to keep my eyes moist. Well, we went ahead and tried it again today. I was hoping that driving the hour and half home- I would feel some tears. Nada! I feel drier and more irritated than ever. I'm supposed to return in 2 wks for a recheck. It is so obvious that the accessory lacrimal glands are NOT working. We discussed Restasis, but he said I would have benefitted from it last time ( I took it 5 wks)if it was going to work. He still might prescribe it if the plugs aren't helpful. How can I not have tears when 2 of them are plugged? I don't get it.

Oh, get this.....I asked him about anything new coming down the pipeline. I was hoping he would mention the Diquafosol. When he didn't, I asked him about it. He had never heard of it. Geeez. And he is supposed to be the best in his field. :yawn:

Steve, can't remember- do you have plugs?
Also, Steve, what do you use at night to keep your eyes moist?

Thank you all for listening.

Amy

Steve:

I'm learning how to deal with this and the only thing that really bothers me is that I'm getting married this year and didn't plan on wearing my glasses... So I hope I am able to wear my contacts again by that date. It also stinks that I have to becarful of where I'm going and how many vials of drops I bring with me. I mean if the palce is hot/dry then I'll need drops to keep my eyes moist you know.

The only change in vision is when my coren was 100% dry that caused me to have a temp. loss of vision. Now my cornea is doing better and my vision is getting better.

As for how long will I need to take meds? Not sure, everyone one is differnt...the eye drops for at least nother 6months the doc said. As for the meds for the S.S. well...put it to you this way the doc said I have to meet with him every 3 weeks and take it from there....I told him I want to start a family in the next two yeras he said one year from now we will talk about when you need to stop taking this medicin.

Amy:

I wish I could be of more help to you! I will tell you this, if you have ANY feeling or htought that your doctor is not the one for you or in touch with what's out on the market then you need to find a new doctor. I don't care "how good" he is in his field even the BEST doctors can get "lazy".

GOOD LUCK to you :)

Hi Amy! (and Calibug and Steve and everyone else!)

I haven’t been checking the Boards too often, as I’ve been doing a lot of traveling for work…but thought I’d drop in and see how everyone’s doing. Here’s an update on me…

I’ve been on the Doxy for a little over 4 months now and it has definitely helped. My eyes are certainly not normal, but they are better…I still use artificial tears during the day, but less often. And my eyes are still very dry upon waking, even using gel the night before. However, the constant burning and itchiness has lessened, and my tear break-up time has improved from awful to near-normal. I don’t know about tear production, as my opth doesn’t believe in the Schirmers test and therefore won’t do one; I still think I have a problem with tear production in general, and it’s frustrating not to be able to confirm this.

So here is the problem…at my last appt, my opth would not renew my Doxy prescription, as she wants to see how I do without it. ARRGH! I’m very nervous about this, and I am treasuring my last few pills and taking them every other day; however, I will run out by the end of the week and then I’m on my own. Amy, isn’t it ironic that you don’t know if the Doxy is even helping you, so your opth keeps you on it indefinitely…and it’s been great for me, so my opth takes me off of it. Does that make any sense?? I do worry about long-term effects, though, so I guess I’m okay with trying to stop…though I wonder if I’ll be begging for it shortly...or cruising the ‘hood trying to score some Doxy on the street ;)

Anyway, I’ve been able to read through most of this thread, and it’s great catching up with you all… Steve, I’m so glad you’ll be seeing Dr. Tseng, I have a good feeling he’ll be able to help you. Amy, hang in there, it may be just the winter weather that is exacerbating the dryness. And Calibug, it sounds like you’re doing really well, keep posting and giving the rest of us some hope! MilknWheat, welcome; I'm sorry you're going through this too, but there are wonderful people on this board who are a great source of comfort and support. I miss Susan and Joy…anyone know if they’re still around?

By the way…it has now been over a year since this nightmare started (Jan 04). I remember thinking, okay, I’ll just stop wearing my contacts for a few weeks and this will all clear up. Ha!

Everyone take care, and keep in touch! :)

Lulu

One more thing...I saw an ad on TV the other day, asking for dry eye sufferers to participate in investigational research for a "possible new medication that targets the underlying causes of dry eye." They gave a phone number to call: 1-866-EYES-DRY. I think this ad is running in different parts of the country, as a friend from the South saw something similar in the newspaper. Could this be Diquafosol (sp?) ??? After my Restasis and steroids experience, I'm too chicken to use any medicated eyedrops...but maybe there are some brave souls on this Board who want to participate!

Lulu-
What a surprise to check the boards and see your post!! It is great to hear from you. I'm glad you are hanging in there and have actually experienced some improvement over the months. I know you were kind of leary of the Doxy at first and then it did take some time for you to feel the effects. That is ironic that now your Dr feels you are ready to be done and you aren't sure of it. Meanwhile, I'm on it and I can't really see much reason for it. Oh, don't get me wrong, I had felt better before, but the last terrible month is sort of overshadowing every good day I had. I always dwell on the bad days. I need a shot of some of Callibug's enthusiasm. :D I guess that can be the way it is with ocular rosacea, but I definitely think there is more at play here. I am severely lacrimal deficient. As you probably read above, I have lower plugs now and no additional tears. Very depressing. I'm so depressed I'm about ready to try Restasis again. And I don't have to remind you of my (and yours) awful experience with that. I felt drier after 5 wks and like my eyelids were rubber. But, I'm feeling desperate again and I dont' know where to turn. Tseng perhaps?? ;)
I am so anxious to hear about Steve's upcoming appt with him.

Lulu, do your eyes feel better when you are not checking this board and posting? (always thinking about them) Maybe I should take a break from it for awhile. Also, I know you had a job where you were at the computer a lot. Perhaps your travel and being away has helped some.

Good luck to you and please check in as often as you can. :cool:

Amy

P.S. Joy, Susan??? are any of you still around?

I can certainly relate to what you are all going through. I've had dry eye/blepharitis for probably 20 years and the last 3 years have been really tough. I developed conjunctivitis in the left eye 3 years ago and since than that eye has been in constant pain. I've been on restasis and doxycycline for two years. I believe the restasis has helped the right eye but not the left. In order fo restasis to work you probably need to be on it for at least 3 months.

I saw Dr. Tseng in December and he diagnosed me with low tear production (schmimer's typically between 3 and 5mm), conjuntivochalasis (wrinking of the cornea) and also floppy eyelid syndrome. The floppy eyelid syndrome is where your eyelids are loose or floppy. He asked if I slept on my stomach which I said I did. He indicated that having contact with the eye and pillow overnight is not a good thing because the pressure can create inflammation. So he suggested I sleep on my back and wear ******s. He also prescribed dexamethasone eye drops which are topical steroids for 3 weeks.

I had some relief in the left eye with the drops and saw him at the end of January. During each visit he takes digital photos of your eyes. He showed me the conjunctivochalasis in both eyes. In addition, in the left eye he noticed a fatty deposit in the left eye that was not in the right eye. Apparently, everyone has fatty deposits in their eye membrane but in my left eye the fatty deposit was more forward than it should be. Between the conjunctivochalasis and this fatty deposit, he thought this could be causing the pain. The next step was put upper plugs in both eyes and see if that made a difference. If the plugs didn't work than he would do the surgery. The surgery is smoothing the wrinkle and than placing an amniotic membrane over the conjunctiva.

The plugs seem to be helping somewhat where the pain is going from intense to mild/moderate. I will probably end up having the surgery although I will wait to June when I can switch from a HMO with no out-of-network benefit to a PPO with 70% coverage. My understanding is the surgery is almost $5,000.

Although I haven't been cured yet, I can't say enough about him. Dr Tseng's practice has provided the most comprehensive exam I have ever had. He has a wide array of treatments available. His practice is also a major research institute conducting numerous studies. He invented the amniotic membrane transplant surgery. In addition, he will answer any of the e-mail questions you have in a timely manner. If your life revolves around the misery of eyes as mine has than it's worth the cost to see Dr. Tseng. I have also heard many good things about Dr. Maskin as well.

Hrllo and Welcome!

Thank you for you post and it is nice to have someone else who thinks highly of Dr Tseng. I haven't even seen him, but I already admire him :) I'm sorry you've been dealing with dry eyes for 20 years. I have a few quesitons for you. Did Dr Tseng keep you on the Doxy and Restasis or did you quit that? You said the Restasis helped your R eye, but not your L. Were your schirmers tests still very low after the long duration on Restasis?How much improvement?
I too, had a very bad conjunctivitis and ever since my eyes haven't been the same. The eye the bacterial infection was in is also still the worstly affected.
I'm curious why he put upper plugs in vs. lower. Did you feel like your appt was extremely thorough and that nothing was overlooked? Also, with 20 years of history, was there plenty of time to explain your history of trials and tribulations in dealing with your eyes?
I'm glad you got a correct diagnosis now and will probably have the surgery in June. It is a hefty price to pay so it pays to have all your ducks in a row where your insurance is concerned.

Thanks again for posting. I know you understand what we are going through.
Please continue to share any relevant info.

Sorry about all my questions. It is just that I'm so curious..............

Amy

Hi Amy,calibug and everyone,

It just makes me very upset that these eye doctors will not perform a simple test like Shirmer test. It maybe becasue they can't bill for it or take that few extra minutes. All I know is that it is very simple test. I had to go to regular doctor who knew how to do this and not an eye clinic. I was not happy about the results but it gave me a closure.

Amy,

Try Restsasis again. I use it at night before bedtime. I feel more moisture in the morning. I also started serum drops and I use it 3-4 times a day. Also I found a eye spray called Nature's Mist(?spelling) which I use to spray the eyes if gets real dry. It is quick and simple. Not as emabrassing as pulling out the eye drops and also less cumbersome. I will keep you guys posted about the trip to Miami.


Steve

Dr. Tseng didn't say to quit the restasis or doxycycline he just said the restasis wasn't working. I have elected to keep taking it based on all of the reports I have read about restasis and it's ability to reverse the inflammatory process. Dr Tseng did two tests on the tear flow. One is a regular schirmers
test which was around 5mm in both eyes and a nasal stimulated schirmers test (where they take a long q-tip through the nose to stimulate the lacrimal gland) and that was 15mm. So I have the ability to produce tears but because of the inflammation and other reasons i'm just not producing the quantity of tears necessary for a normal tear film. In addition, he indicated I have large eye opening or width which means I need more tears to cover the eye than a normal eye opening/width. So this combination of low tear production and large eye width is part of the reason for my eye problems.

In terms of the restasis helping over the past two years I think it has helped the right eye quit down but the left eye has never recovered although the conjunctivochalasis maybe causing that problem. For me, I don't think the restasis ever increased my tear production. However, for many people it has worked. At one time, my schirmers was 2mm and i believe with Theratears Nutrition I was able to increase it back to 5mm.

I forgot to mention that I had already had lower plugs in for over a year which did not help me. So he has tried upper plugs. So I currently have both upper and lower plugs.

The first visit I had was around 2.5 hours mostly with the medical doctors studying underneath him. So they take pictures of your eyes, get a history and than Dr. Tseng spends maybe 10 minutes to review your case and from there he decides which tests to order. They did the two schirmers tests I mentioned, the tear dynamic functional test using fluorescein, and a kinetic tear interference to examine the lipids on the eye. He also did a demodex test on my eyelids to see if the blepharitis was due to mites which was negative. Once all of the tests are done than Dr. Tseng review the results with you and comes up with a treatment plan. The 2nd visit was over an hour. So I think he's extremely thorough and complete. Although it's expensive, you do get the best treatment available. Dr. Tseng answers all of your email questions and is willing to work with you. His practice only sees corneal disorders and since the patients are paying up front he's probably seeing the toughest cases.

KDC66-
Thanks for your reply. You sound so knowledgable about this dry eye stuff. I really appreciate your sharing especially what Dr Tseng says and recommends. By the way, did he mention whether continued inflammation and perhaps the conjunctivitis could cause damage to those accessory lacrimal glands ?(the non relux tear)

I called my opth yesterday to tell him the sad fact that the lower plugs he put in a few days ago are not working at all to hold any tears in my eyes. There just isn't any. He told me to start the Restasis- so I have. It will be a long haul. Last time I got to 5 wks, I felt worse than when I started. I'm trying to stay postitive though. Perhaps this time will be different. Thanks again.

LULU-
One more question if you are around. Did you ever get rid of the redness? I know you were concerned about some prominent vessels in your eyes. Just wondered if the doxy ever helped that. Also, are you still doing scrubs, massages, and warm compresses?

MilkNWheat-
I wanted to share something with you. A few months back, I tried a suppliment called BIO Tears by. It is an Omega 3 with black currant oil and etc. Anyway, if you look it up there is good reportings on people with Sjogrens responding to it. It is even recommended for that. I was using it for tear production and it sort of made my eyes feel oily in a not good way, but then I don't think it agreed with my ocular rosacea. HOWEVER, from the 3rd or 4th day, I noticed a great increase in my saliva. The reason I mention this now is I just started a new supplement again called Natrol Omega 3 Complex with flax and Borage oil and I'm noticing the same thing again. Saliva flowing. Wouldn't it be great if it helped my eyes?? :rolleyes: Just thought I'd let you know if you haven't tried one of these before.

Well, Steve must be in Miami right about now. I hope he is gaining knowledge and help from Dr Tseng.

Talk to you later Calibug!

Amy

I have a question to all of you.... I may have missed it since there is alot of posts in this thread...but have any of you guys had blood work done to see if there is another problem creating the dry eye like how I have?

I just want to make sure that all area's have been covered for you all.... I mean I'm not saying you all have Sjögren's syndrome like I do... I'm just wondering if you all did any kind of blood work or seen any other doctor besides your eye doctors?

Yes, I had the blood work done. Actually, it was a bit nerve racking for me because my ANA wasn't zero, but in the 1-40 range. It is still considered negative. Also the Rheaumatoid factor was negative and they did the special SS1 and SS2 markers and they were negative as well. I have since read that a slightly elevated ANA can be seen in people with inflammation in their systems (as in rosacea) I now believe I am in the clear with respect to Sjogrens, but at that point I just needed to know.

Also, I have a friend of a friend who has Sjogrens. She is a 40 yr old female professional (a pediatrician actually) and has lived quite comfortably and happily with it. She only takes Restasis for her eyes.

Amy

Hi Amy!

I only have about a minute so this will be a quick post; I will try to write more next week, but just wanted to answer your questions. Yes, I think my eyes are much better when I'm not staring at a computer--which could be one reason the last month or so has been okay. Unfortunately, a major career change is not a possibility at the moment! As far as checking the boards...it was nice to pretend (to myself) to be "normal" for awhile, but I think the information and support I get from reading these posts is much more beneficial. And about the blood vessels...still a very great concern. They have not disappeared AT ALL. This is very depressing. I think the overall redness has lessened a little bit, but I still have one big vein in particular (that appeared during my Restasis/steroids episode) that has never gone away. Sigh. I guess I am just trying to get used to it and chalk it up to things that happen with age. Do you have any really visible blood vessels now? We'll talk more next week...

Lulu

Amy, I just re-read your message and noticed you're going back on the Restasis! Please keep me updated on your progress. Last time I tried it I really think it made my eyes feel worse...and much drier, strangely enough...but I am still keeping it as a consideration for the future. GOOD LUCK with it!

Yep! I've got visible red blood vessels now worse than I've ever had before. ~even an ugly "corkscrew" looking one. I think they are here to stay, unfortunately.

My eyes have been very sore the last few days (burning and the entire surrounding lid tissue) especially since starting the Restasis. I'm nervous about the whole deal, but I don't know what else to try anymore (or should I say try again) Wish me luck!

Amy

Hey Everyone!

Good to be back. Hey, MilkNWheat, that is great about your upcoming marriage. Congrats. Hope all goes well.

Kdc66 - I was wondering if you knew the reason you have blepharitis. Do you have skin problems as well or just the blepharitis? I'm curious to know why you have these eye problems. 20 years is a long long time. Have you been off and on doxy during those 20 years as well? I always wonder if I'm going to have to take these antibiotics off and on for years.

Lulu - you'll have to forgive me but I'm trying to remember what is wrong with your eyes? Do you have blepharitis too or was it something else causing your dry eyes? I'm glad the doxy is giving you some relief. I know what you mean about going off of it. Did he stop you cold turkey or taper the amount? I've understood that you should taper the amount...like 100 to 50mg for awhile and then alternate every other day, etc... I have a doc's appointment next week and I'll see what he will do with my prescription. I've been on antibiotics for almost a year now. I use to take 100 mg and then when he saw that the oil was doing better, he put me down to 50 mg.

Well, I'm doing well. I've had a few calm weeks. I went ahead and bought the Soothe eyedrops...they feel so weird (in a good way) putting them in. Everything turns a bit yellow at first...strange but they feel good. I'll see if they give me some relief...I've only tried them a couple of times. I really only want to use them once a day because I assume they have preservatives in them (they come in a bottle not vials). They are suppose to work for up to 8 hours.

A couple of interesting things I've read....someone controls their blepharitis by putting castor oil on their eyelashes. Apparently it controls his/her symptoms. It also may help your lashes grow but I don't know if I believe that. I have started putting the oil on my eyelashes before going to bed and I do have to say that my eyes look pretty good in the morning. Who knows...it may not do a thing but I guess it couldn't hurt! :-)

I've also read that one lady's eye symptoms flared up when she would eat gluten. She went on a gluten-free diet and her eyes got better. I don't know if I'm ready to give up bread, etc... but it does make you think about it. Maybe I'll try that for a week just to see. I'm always one to try something new. If I knew giving up wheat would make my eyes better, I'd never look at another piece of bread, but I'm sure that is too good to be true.

I think one of the things that is helping me immensely is the cleaning. I clean my eyelids three times a day. Given, I'm extremely careful to do it gently. I've been way too aggressive with my eyelids in the past. I have found washing my face and eyelids midday relieves me of the eyelid burning. I think the oil is just sitting there and irritates my eyelids.

I also use just one end of a q-tip for each eyelid margin. I carefully wipe away the oil (whether I see it or not) and do not reuse that end. For whatever it is worth, thought I would share that.

Hey Steve....hope you are well!

Calibug

Well, I've been taking Restasis 6 days and my eyes are extremely irritated. They burn for a long time after each application. Usually with my ocular rosacea my eyes are pinkish when I get out of the shower (mildly) but today after using the Restasis about 45 minutes before my shower, I got out of the shower looked in the mirror and both whites of my eye were a true red. Anyone would mistaken me for having oink eye. I looked and felt horrible. I had to wait 2 hrs before I could leave the house and look somewhat normal as it slowly faded. My eyelids are swollen and thick. It feels similar to getting lots of shampoo in your eyes and then rubbing them for 5 minutes. The searing burning pain is awful. I'm not sure Restasis is responsible for all of this. The bad oil in my eyes is not helping. It is so hard and confusing. I just had plugs put in 1 wk ago and I don't know what is causing the pain. I wonder if holding the oils in my eye longer (due to the plugs) is exacerbating my condition. If I can't put up with Restasis, it is like there is no option to increase aquaous tear.

Well, I just wanted to vent. Today is sucks!

Amy

Okay, I just re-read my post. "Oink" eye. Kinda funny. :rolleyes: I typed a little fast and i guess it shows

For me, my whole dry eye/blepharitis issue occurred in high school on a trip to
Europe. I never had eye problems before but when I went on an overnight flight and woke up my eyes felt terrible-dry, irritated, red. I also developed sinus problems including a sinus infection. At least for me I believe my problems started as a result of a sinus infection that I was unable to get rid of. My eyes and lids for whatever reason developed an inflammatory response to the infection and this turned into dry eye/blepharitis-that's my opinion.

No one I have seen has ever explained why I incurred blepharitis/dry eye. They just indicated that it is unusual for a young male to have dry eye. All of the literature suggests that at least for dry eye it is the result of inflammation to the eye which in turns affects the lacrimal gland tear production. The lack of tears results in additional inflammation which is a cascade effect.

I do not have any skin disorders except for the blepharitis. Scientists still do not know what triggers blepharitis except they know that androgens have an impact on the glands.

if your trying Restasis and having burning than you may want to have your doctor try a steroid/restasis combination. The steroid such as lotemax would used prior to or at the same time as Restasis. This typically results in less burning for the patient and they are able to tolerate restasis.

Amy, it's like you're re-living my restasis experience. My eyelids became red and swollen too, and my eyes were always red and burned almost 24/7. At the time, I assumed it was an allergic reaction to the cyclosprine. Do you think that's a possibility for you? Unfortunately, not a lot of people have posted here about their restasis experiences; it is a much more active discussion among the sjogren's sufferers. I also had a bad experience with plugs. Do you have the permanent ones, or the ones that dissolve in a week or so? My eyes became much redder with them, and the plugs themselves drove me crazy (I could feel them scratching against my eye, as weird as that sounds). I am so sorry you're having such a rough time; hopefully it's just a few bad days and then you'll be back on the upswing...

Hi calibug! I've been suffering with dry red eyes for over a year now. It took 8 months and 4 doctors to get a diagnosis of MGD. I don't really have any skin problems, or even visible signs of blepharitis; my opth just said she wasn't getting much in the way of oils when she expressed my eyelid glands. I then took Doxy for 4 months, which seemed to help. In taking me off of it, my opth did NOT taper the amount, nor did she instruct me to take them every other day or so...I did that anyway, though, after reading one of YOUR messages :) I have 3 pills left and I'm really stretching them now (every 2 days or so) :rolleyes:

Steve...did you see Dr. Tseng last Friday? Please let us know how it went!

Hey Lulu and everyone,

I was really hoping for some good results BUT I think I am still in square one.
At this point I can't even remember what it was like to have normal eyes.

I did go to Dr. Tseng's clinic. I held my expectations before I left because I didn't want to get crushed with bad news. I flew in to Miami and was able drive to his office without difficulty. It was very sunny; and oh man did it hurt. But for few minutes at a time I could close my eyes and bask in the warm sun and remember the days I played around South Miami beach few years ago. It is different world for me now. This time I felt like I was landing on a Mars for scientific expedition. I wish I had a space suit with gold tinted visors.

My appointment was in afternoon and so I drove around a bit. His office is only distingusible by sign across the side of building as it is located in large medical office complex. There were few others in waiting room when I walked in. I did not get a chance to talk to them because I was called to one of room after I finished paperwork.

A nice lady who presented herself as an ophthalmologist(China or Tiawan?) greeted me. I guess she is fellow studying with Dr. Tseng. She took my history for 10- 15 minutes. Then she started her exam. She was methodical and used same equipment you see in regular clinic but this was attached to digital camera. She was able to take pictures and show me.

I then went into another room and had variety of other tests. I had lipid analysis of tear, flourecein clearance test and then gadget for measuring body heat in that order.

Lipid test was painless and basically she used equipment that took pictures of my oil layer with blinking. I could talk more about these tests if you are interested. Overall testing took about 2 hours. Then I met with Dr. Tseng. He was unassuming man and was very friendly. I guess my case perplexed him but UNLIKE other doctors he wanted to answer my questions as best as he could.

As I found out before the trip I am deficient in water tear layer. You can figure this out even without doing Shirmer test. If you pull your eyelid down and look closely with hand mirror you should see a thin layer of water in the valley of the eyelid. If you don't have this then you have water deficiency. This was pointed out by Dr Tseng's assistant during exam.

Overall it was worth the trip. I am not improved but now I did have the full testing not available except in few clinics in the world. He did prescribe steroid eye drops. I did try for few days and t seemed to help but inflammation is back as wicked as ever. It seems to say " you want to try that ...well try this pain and burning ... you idiot who abused me with bad contacts....haa!!! .... and don't try that steroid stuff on me again"

Well, it is like having another entitiy living inside of me which I have no control of. I could cry but what can I do. I don't have much options at this point. I am waiting for diqufasol and continue with restasis. I did read an article about a transplanting a portion of salivary gland from lip to under upper eyelid. Apparently it makes lubricant which can pass as tear. What a scary thought. If you guys have any specific questions about trip to Dr Tseng let me know. I am going to go hide for few days for now.

Steve

Hi Steve-
Thank you for the report. I hope you found the trip helpful? Was it? What did he say about your chemical burn and the yellowing discoloration etc? Is that all from dry eye? Is any of this fixable? What is your prognosis? (Lots of questions, I know) :rolleyes:
Did he do a schirmers test or did he use more sophisticated equiptment to measure your lacrimal output?

So.....you're supposed to try steroids for a few days. Then what?? Did he recommend keeping up with the Restasis? How about the serum drops ( if you are still taking them) I can't remember, were you taking Doxy too? Ohe here I go with the questions again. :confused:

I don't quite understand the pulling of the eyelid down to check for dryness. I think I have a pool in the valley of my lower lid- but its all oil and lots of it, but then I have a hyper oil problem resulting still in inflamed, swollen and dry eyes regardless.

Well, I am glad you went to see him and you probably had the most thorough exam out there. As I understand, he is very good at answering all patient emails in a prompt manner.

Thank you again for your post. I'd be interested to hear more as you think of it.

Amy

Steve,

Good to hear you went to a new doctor and you seem to like him I pretty much have all the same questions that Amy did so Thanks Amy for getting to this before me :)

Will you go back to this doctor?

Restasis - I've been using this 2xs a day since Dec. 30th 2004 the doctor told me I'll have to use them a min. of 6 months and I did notice that my eyes are a bit less dry I only need to use over the counter drops in the afternoon/evening now vs. every 2hrs. Also when I "try" to cry before I would have just pain and feel the build up but nothing would happen....no when I "cry" my eyes get glossy (no tears run down my cheek) but my eyes do get glossy and they get blood shot. So I think it's working but.... time will tell....

Plugs: I had these put in about 2 weeks ago and they are the 6 month plugs... I can only think they help work... no pain.

Sometimes I get pain around my eyes and then I get cranky and want to be left alone (this is annoying when I'm at work lol) I dont know if this is the Restasis working or what....

but that's my info on both of these things...hope it helps some of you.

Hi,
Did you have other problems besides dry eyes? I have only had mine for four months but it feels like four years. I have constant irritation, burning, pulling. So far drops haven't worked but I realize I will need to try to get this condition under control and I'm jumping the gun. I just want to know that there might be some relief down the road if nothing else works. I will be seeing a new doctor on Wednesday at a hospital (Canada). I'm hoping he will come up with something. He is the third eye doctor I've seen and he's supposed to be good. Does Dr. Tseng use medical treatments for dry eye or just surgical? I imagine he only sees patients that have exhausted all treatments and got no help. I'm already starting to feel desperate. Thanks for listening.
BB

Restasis - I've been using this 2xs a day since Dec. 30th 2004 the doctor told me I'll have to use them a min. of 6 months and I did notice that my eyes are a bit less dry I only need to use over the counter drops in the afternoon/evening now vs. every 2hrs. Also when I "try" to cry before I would have just pain and feel the build up but nothing would happen....no when I "cry" my eyes get glossy (no tears run down my cheek) but my eyes do get glossy and they get blood shot. So I think it's working but.... time will tell....

Plugs: I had these put in about 2 weeks ago and they are the 6 month plugs... I can only think they help work... no pain.

Sometimes I get pain around my eyes and then I get cranky and want to be left alone (this is annoying when I'm at work lol) I dont know if this is the Restasis working or what....

but that's my info on both of these things...hope it helps some of you.

MilkNWheat,
I was trying to reply to your post, but I'm new and guess it didn't work. Anyway, did you say the plugs are working? I wasn't sure. I am seeing a new doctor on Wednesday, and I think he may suggest plugs. Right now, I would try anything. Hope you're getting some relief. We can't get Restasis in Canada. I would like to try it.
BB

MilkNWheat,
I was trying to reply to your post, but I'm new and guess it didn't work. Anyway, did you say the plugs are working? I wasn't sure. I am seeing a new doctor on Wednesday, and I think he may suggest plugs. Right now, I would try anything. Hope you're getting some relief. We can't get Restasis in Canada. I would like to try it.
BB


BB,

Yes, I have other problems besides the dry eyes.. I have a dry mouth & throat as well as arthritis... my lips are always chaped and my hands get so dry it's crazy... I never thought I had "dry mouth" that was ab normal but it is. My hands were (on meds now) stiff when I woke up in the morning and when they are cold they tend to get stiff but after about 1hr or so they start to losen up.

Are the plugs working? Well, it's hard to tell for sure since I've been doing the restasis since pretty much day 1 but if I had to give you an answer I'm going to say yes. Because I don't have to use the drops as often after the pulgs were put in as I did before.

Good Luck to you and keep us informed!

BB-
I know how you feel. My eyes have been dry for 10 months and I can hardly remember what life was like beforehand. I don't think that except for contact saline solution that I ever had to use an artificial drops in my life. Now it is a daily occurence.
Good luck at your appt. By the way, I had the lower plugs put in but the wierd thing is... is that I can't even tell a difference. I guess my eyes are THAT dry. The only positive in them (in my case) is that it seems to keep artifical drops in a little longer. I just wish I had more tears. I have only been on Restasis this second time around for 1 1/2 weeks so far. I hear it takes many weeks, months.
Thank you, MilkMWheat for your encouragement with Restasis. I'm glad it seems to be helping a little.

Amy

MilkNWheat, Amy
Thanks for your information. I will let you know what happens after my appointment on Wednesday. Wish we had Restasis. I would like to try it. I think we'd all like to try anything for relief. Have you tried glucosamine/chondriton for the stiffness in your hands. I had stiffness in my feet and it helped me, but I've heard it doesn't work for everyone. Guess I was lucky on that one.
BB

Steve--I'm so sorry to hear that your visit to Dr. Tseng did not produce more immediate relief. But I think it's great that you had all the tests performed, so that now you can be more confident in your diagnosis. Did Dr. Tseng have any idea what happened to your lacrimal glands, to cause your dry eyes? And if they will recover their normal function in time?

Amy--it's great to see you checking in. How are things going with the Restasis? Has the burning/etc lessened as you continue to use it? I hope you are doing okay...

Lulu

MilkNWheat, Amy
Thanks for your information. I will let you know what happens after my appointment on Wednesday. Wish we had Restasis. I would like to try it. I think we'd all like to try anything for relief. Have you tried glucosamine/chondriton for the stiffness in your hands. I had stiffness in my feet and it helped me, but I've heard it doesn't work for everyone. Guess I was lucky on that one.
BB

What is glucosamine/chondriton? do you take it by mouth is it a pill? Is it RX only or over the counter? What is it? :)

The mobic is really helping with the stiffness in my hands.

Hi all-
just checking in. Nothing too postive to report. My eyes have been a dry gritty burning mess the last few days. Today I woke up with my first visible clogged gland. (white *** the size of the tip of a pencil) My lids are so sore and red and I have been able to squeeze out some milky oil if I push the lid margins upwards.
I am almost 2 wks into Restasis. No tears yet. The burning upon installation has lessoned some though. I guess I'll keep putting up with it. Nights are bad.

My facial rosacea has been flaring badly as well. But that is a whole new topic.

Amy

What is glucosamine/chondriton? do you take it by mouth is it a pill? Is it RX only or over the counter? What is it? :)

The mobic is really helping with the stiffness in my hands.
MilkNWheat
I use Glucosamine Sulfate/Chondroitin Sulfate. It is an over the counter capsule. It is made by several companies. I asked my doctor about it and she said it sometimes works and sometimes doesn't, but it worked for me. My brother-in-law uses it also and it works for him.

Amy
Awhile back, you said you tried Bio Gel Caps. Think I got that right. Were they any help. A friend has just brought me TheraTears Nutrition. I'm going to try them, but I'll wait until after my appointment tomorrow with Dr. at Tor. Western.
BB

My story is as frustrating as many of you. The nightmare began when I had Lasik done in Jan 2000 (sad to know I did this to myself). You name it I"ve tried it as well with little to no success. I'm 4 weeks into Restasis and the effect is minimal so far.

Has anyone tried TheraLife? I'm curious if it is effective?

Casinogal-
How did your appt go?? Sorry for me delayed response. No, I didn't find Bio Tears gel caps to be of any help. Maybe I didn't take them long enough. After awhile at the recommended dosage my skin began to feel extremely greasy. I have oily skin to begin with. I didn't notice increased tear production though. Good luck with the Thera Tears Nutrition.

Welcome Kar1992-
Aren't dry eyes the pits?? People tell me to stay with the Restasis. Results can take a long time. Please share more of your story. What eye symptoms do you have?

Amy

:wave: well i just typed a big ole long thing and it went poof,lol. it will be shorter this time.iam new here i have been reading here for a while.i get some comfort and hope in reading as everyone here is expressing the same frustrations and problems iam having. in short this time,lol i have dry eye problem not as long as so many here just a year or so. ia also have reccurant eye errosion problem going on.my cornea has ripped many times once or twice a year but i had no idea what it was i just thought something was in there and wouldnt come out.last year i had a bad bad bout,lasted about six months every night my cornea would grow to my eylid when i sleep and rip open when opening the eye. the doc says my cornea doesnt grow togeather properly and so hangs on to the lid, especially when its dry.we went through many things contac bandage eye plugs ect. the dry eye only makes it worse.the cornea is now under control nothing bad for 6 months as i baby the eyes as you all here do.my problem is the dry eye and feeling all the same things you all are here,i fear everyday due to the dryness my eye will rip again so, eye drops like crazy .for the last year i had an older doc and he was the rush ya through kinda guy with not much sympathy.doctors dont really know as they havent had this feeling!!
i diecided to post because i do have a new woman doctor whom i really like. i have been feeling much more comfortable so i thought i would post what iam doing in case it may help others. the new doctor has me on this vitimin diet everyday..
breakfast.. 6 cold pressed flax seed oil capsules 1,ooo each and one primrose oil capsule 1,300
then same thing at dinner. also 12 almonds per day.
i also was taking Carlsons Moisture-eyes from the vitimin store which i take also cuz theres lots of good things in it.
i have been on restasis for 4 months and for the last two weeks i have been exercising at least 60 min. a day.
i dont know if its one of these three or all combined but my eyes feel more "normal" and more comfortable that they have in a long while. so i just thought id share in case anyone wanted to try the vitimin diet i kinda feel that could be it but then maybe exercising is making the body oils flow better,lol okay good luck to everyone, julbee

Hi Amy and all'
Had my appointment on Wednesday. I thought it went well. I wasn't rushed and was seen by 3 different doctors (or assistants). The first test was the Schirmer Test. I scored 12 in left eye and 6 in right eye. They told me 10 is normal. Then, my eyes were stained with orange, looked at under light. Then, the doctor I had been referred to came in. He stained my eyes with green. He said my problem was bilateral blepharitis meibomitis/oocular rosacea. I gather this is MGD I am taking doxycycline 100mg 2 tablets a day for one month and then 1 tablet a day for one month. At night I am to put Tobradex Opth ointment on lid margins for three weeks. I have to do lid compresses 2-3x a day and wash lids with Blepharoshampoo. He didn't mention doing lid massages. For dryness, he gave me Systane eye drops with preservatives. That surprised me, as everyone else has said use drops without preservatives. I think I'll see if my drug store will order them without preservatives as they didn't have them. It's only been 2 days. Lids feel better after compresses, but I find Systane irritating. I wonder if I should go back to Refresh Endura. It is not as irritating. Wish I could talk to doctor, but I doubt he answers questions over phone. I will be seeing him in 6 weeks. He said he would see me one more time. Guess he's really busy, since he specializes in a lot of things. He'll probably hand me back to the doctor that referred me. I asked him about TheraTears Nutrition. He said it might help. He was concerned about Vit E in it. Says recent tests say it's not good for heart and I should check with my medical doctor first. Also told me to increase Omegas in my diet, but didn't go in to any detail. Sounds like many of us are doing the same things. I hope this helps. Guess it's wait and see. Great to talk to others in same boat.
BB

Casinogal:

I also wonder why your doctor said with preservatives and not with out.. Did you ask him why? If so what did he say? I'm a big fan of Systane preservative free eye drops I think they work really well.

Julbee: OUCH sounds really painful what you describe. I wish I had some words of wisdom for you... All I can say is keep seeing the doctor and doing what works for you :)

Good Luck.

Julbee and BB-
Thanks for your great updates. It sounds like you have the same thing I do, BB. Posterior bleph and ocular rosacea. I am only on 100 mg of Doxy a day, maybe I need more?? The Tobradex will probably make you feel a lot better in the short term. Hopefully it will bring down the inflammation enough in the long run. Your schirmer scores weren't too bad. Mine were 15 and 9 last time- so not totally out of range either. Well, 6 is a little low, but isn't it strange how our eyes can feel horribly dry, but in reality they are producing some tears.

Julbee- thank you for the vitamin diet. I do flax and borage oil already. Maybe I will eat some more almonds. ;)

Amy

Amy,
Yes, I can't believe how dry my eyes feel. I don't find any of the eye drops help too much. Sometimes, I feel they add to the irritation. Do you do lid scrubs? I find that irritating as well. How long have you been on doxy? I'm trying to be positive and any improvement will be wonderful, but nothing so far. How long does it take, I wonder. Oh, yes, do you use makeup or moisturing creams? Do you think they might contribute to problem? Someone said they used cosmetic pads for the lids (maybe it was you). I'm starting to use them. Thought they might be less irritating than facecloths since they are washed in soap.
BB

BB-
It's been a long long road. I have been on Doxy for over 7 months now. In my situation, it seemed to really help initially, but it seems to have lost effect. I see my Dr tomorrow so I will see what he suggests now. yes, I do lid scrubs (but not with a Q-tip) I use cotton pads and a tiny bit of Cetaphil cleanser. I also try to do at least 2 warm compresses a day. I have recently been having more trouble with plugged meibomian glands. Do you have facial rosacea as well? I use a very mild oatmeal cleanser on my face and eyes. It works so great that I find I don't even need a moisturizer with it. I just use a sunsreen if am going to be outside much. That is all I do. My facial rosacea is a ilttle out of control right now. I am hoping that if I can get that under control that the eyes will be better too.
I'm so hoping the Restasis kicks in soon. It seems so strange that I have lower plugs in and I still lack so much aquaous tear.

Take care
Amy

Hi Amy,
Seven months is a long time to be on an antibiotic. I hope you soon show some more improvement. Try not go get discouraged. I was reading that it can take up to a year to get this mess under control. I had blepharitis twice before and was able to control it with compresses and scrubs but it didn't work this time. We don't have Restasis in Canada. Your tear production doesn't seem so low; but I believe, in going back over messages, it was lower at one time? Is that why you're on Restasis. I have rapid tear evaporation. Your problem the same? The cotton make up pads didn't work for the warm compresses. They wouldn't hold the heat, so I'm back to face cloths. I like them for the cold compress. I was very gentle when I did the lid scrub today, and the irritation was less. Hope I'm getting the job done. The Blepharshampoo is like a thick gel and doesn't spread too well, so I find it hard to use, especially on the lower lids. I prefer Lid Care, but will use what the opth tells me for now. No, I don't have facial rosacea (as near as I know). However, the opth looked at my skin and said I did. What are the symptoms? No one has ever mentioned it before. Thought my eyes felt a tiny bit better today. Yesterday was a write off, constant irritation. Good luck on your appointment tomorrow.
BB

Hey Everyone!

Haven't posted in awhile. All is well though. Had a doc appointment last week and inflammation is down. Tears are back back in the normal range (10mm in one eye and 12mm in the other). Eyes apparently looked good so things are on a positive upswing for now. Had a flare up last week again (that time of the month) but they have calmed down now.

He also said that hormones may play a role. Something to the effect of androgens and getting closer to menopause or something. Hope they do more research and treatments in that area. I wonder, will things get better after menopause or worse??

He has kept me on the doxy for now. Wow, it has been almost a year for me so far. We are going to try to alternate days at 50 mg. I was on 100 mg and then he put me down to 50 mg/day after about six months. Now, we will try alternating and see how that goes. If it doesn't work, I'm back up to 50 mg a day.

Never thought I would be dealing with this for so long. Guess something we have to adjust to and be patient with in the meantime. I'm still on the restasis. I think that has helped too. My eyes felt wet this morning. Instead of feeling hot they felt damp and cool...not the reflex burning tears...the nice normal ones... Strange how excited we get now over that...how much I took that for granted before!

Well, hello to the new "posters" on this thread. By the way MilknWheat, I love the Systane non preservative tears too...They are by far my favorite ones!!

Hey Amy!! :-)

Calibug

Calibug, interesting you mention androgens. I've had dry eyes from accutane for 11 1/2 years. On February 1st I started taking 10mg of DHEA daily. Since then my "bad eye days", the days where your eyes burn like crazy and are all red, have been cut from 1/3 of days to none so far. DHEA boosts serum concentrations of the androgens DHT and androstenedione. These two androgens are very important to meibomian gland function. They also kick white blood cells out of the lacrimal glands, which is important to those who have Sojgren's Syndrome. So yea, menopause is bad news if you have dry eyes. Definitely don't do hormone replacement therapy. I don't even recommend DHEA. I'm only experimenting for a few week