Hello- I've been following along here for a few weeks. I've begun to feel desperate and need some hope, inspiration and advice. I'm relatively new to dry eyes. I am a healthy 35 yr old female who has worn contacts since I was 15 and never had a problem (or so I thought) Mid May of this year I developed pink eye that I believe I contracted from my daughter. It was a particularly bad case in my R eye. I was treated with two kinds of antibiotics as the Polymyxcin (sp?) didn't work and finally the Tobramycin did. After 7 days of treating (and I occasionally gave my good eye the L a drop or two so the infection didn't spread) I was left with unbearably dry eyes. They are the kind that burn during the day and I'm almost unable to open them at night. My regular MD told me to use artificial tears. He didn't tell me what kind so I went out and bought some cheapie stuff with preservatives. I dind't know. They burned my eyes all the more. I sought out an opth who did the rose bengal staining and the tear break-up. He didn't tell me the results but did say that he could definitely see dry eye damage. He told me to use Refresh Endura. That seemed to help for a few days, but the burning continued. 2 wks later I saw him again and this time he put me on Restasis. They burn a bit when I use them but I got used to it. It seemed like about 3 wks into them I started to feel some relief (not a whole lot) I still barely have tears. If I yawn, the slight tear that I do form is very delayed. Also, I have cried a lot over this condition and the amount of tears is far less. I also must tell you that I have seen a dermatologist who ruled out ocular rocasea and a rheaumatologist that ruled out Sjogrens.
I have a good long standing relationship with my optometrist- so I went to him for my usual exam. He spent a lot more quality time with me and did a Schrimer's test. I thing it was 3mm on the R and 5mm on the L. (this was 4 wks into Restasis) I never ever thought I'd be wearing contacts again, but he prescribed the Focus Night&Day for dry eyes. I have an Acuvue in the L because that eye has stygmatism and they do not make the Toric lense in the brand he recommended. Anyway, for the first few days - I was thrilled to be back in contacts. Then, my eyes began to hurt quite badly and even after I would remove them. When removing them they would stick to my eyes. The hot weather here 80's and 90's has not helped. I dry out much more quickly. Everything I have read says that people with dry eyes should not wear contacts. I guess I should consult the opth about that, but I don't get a warm feeling from him that I do with the optom. I feel like this may now be a permanent situation and it depresses me totally. It is sad to think that my tear glands could be shot. I now refer to my life before May 16th and after that awful infection/antibiotics. If any of you have ever heard of Medicamentosa- I think that is the reaction I had- a toxicity to the antibiotics. I am not sure whether I should continue with the Restasis because the burning upon insertion has become more and more. I hate to keep putting drops in my eyes. I 'm just dealing day to day, but this has severely affected my quality of life. I don't mind too much wearing glasses, but the constant discomfort from dryness is intolerable. Oh yah, the opth also told me that I may have Bleph and to do the warm compresses and lid scrubs. I do have oily skin, but I do not have dandruff or any particles in the lash line. Never had a problem before that infection.
I haven't tried the Doxycycline or plugs yet. I wanted to give the Restasis a full try. I'm not too happy and I'm none to happy to hear that there is no cure for dry eye and that some people take Restasis indefinitely. I hate the thought of the future ahead. So far my vision has not been affected with the exception of light sensitivity in the AM. I have to use a gel at night so that my eye lid can roll over my eyeball. This sucks.
Thank you so much for reading my story. Please, I would be happy to hear any input or if you just want to commiserate with me.
Thank you,
Amy
The following user gives a hug of support to ajneedhams: burro (07-13-2011)
I want to tell you that you are not alone. I totally understand your frustration. I've been battling dry eyes for almost 3 years and every day they feel miserable. Your'e new to this, and I've got a lot of advice. So forgive me for rambling! I'll start by filling you in a little bit on my own story.
I have had so many eye problems associated with my dry eye. Infections, altered vision, corneal ulcers, pain, etc... My doctor and I have been desperate to find something that would work. We tried every possible treatment and drop known to man. I even go down to see a specialist at John's Hopkins' Wilmer Eye Institute in Maryland. With everything that we tried not working, we were thrilled when Restasis came out. WE thought it would be the miracle I am waiting for.
We tried it immediately and quickly found out that I am allergic to Restasis.
Now we are waiting impatiently for Diquafosol to be approdved by the FDA.
The only thing that has helped is permanently closing all 4 of my tear ducts with cauterization. Now I have enough tears. But it doesn't matter because I only have the watery layer. I am missing the mucus and oily layers, which are what make the tears stick to the cornea and provide nourishment and lubrication to the surface of the eye. He doesn't even do schirmer tests, because we know that I have enough tears. I just don't have the right kind. For me, I think that is even worse. Because I've got water dripping down my face (since it doesn't stick to my eyeballs, it just runs right out of my eyes) but at the same time my eyes are SEVERELY dry. Schirmer tests don't always tell the whole story. You don't have enough tears, but has your doctor said anything about what your TEAR QUALITY is like? That can be a much harder problem to cure.
Lack of tear quality usually stems from clogged meibomian glands. I don't have the flakiness at the base of my eyelashes, but all of the oil glands (meibomian glands) in my eyelids are clogged. I use hot compresses and Doxycycline to unclog them. Hot compresses and Doxy will ONLY help you if you have Blepharitis or Meibomitis. (the clogged glands) So it is a good idea to ask your doctor about your tear quality. If you have poor tear quality, it is likely that you have one of these conditions.
The major thing I have learned over the last 3 years is that I have to be very pro-active in my care. I love my doctor, but he can't help me if I don't tell him what is bothering me and alert him to new situations. I am lucky that I found a wonderful ophthalmologist who really knows his stuff. He's the most compassionate man I've ever met. He's become not only my doctor, but my friend. I most certainly do get that warm feeling from him. Keep searching until you find an ophthalmologist who you trust and feel comfortable with allowing him/her to treat you. An optometrist is good, but most don't know as much as ophthalmologists do about medical conditions of the eye, such as dryness. You can always contact your local teaching hospital or medical school and speak with the department of ophthalmology. Find out who is their very best corneal specialist and/or dry eye specialist and see him. I'm really good at doing internet searches for doctors. If you tell me where you live I might be able to help you find someone.
But most importantly, be pro-active. I can't emphasize it enough. You are your own best advocate.
I pay very very close attention to my eyes, and if I notice the slightest change (redness, green/yellow crust, swelling, pain, vision changes, etc....) I know it means a change in my condition, and I am in the doctor's office very quickly. The other most important thing I can tell you is that not one product works for everybody. Try all of the artificial tears out there (only preservative free) until you find the one that makes your eyes feel the most comfortable. Personally, I prefer Bion Tears. Some people love Thera Tears. I hated it. You also might like to use an ointment when you go to sleep, to help with nighttime dryness. I use Hypo Tears Ointment, preservative free. But there are lots of others out there. You can also use something called Thera Tears Nutrition. It is an oral supplement that contains flaxseed oil and other essential nutrients for your tear composition.
For relief when it gets really bad, I use cold compresses. Sometimes I live on them for days. They enable me to be able to open my eyes, and stop the itching and burning.
Also, be very sanitary. Wash your hands every 5 minutes if you have to! If your eyes are dry, they are more prone to infection.
You defintely should not be wearing contacts if your eyes are dry. You are putting yourself at risk for infection and corneal abrasions. The reason for this is that contact lenses float in your tears. If you have no tears for them to float in, they are going to stick to your eyeballs, move around in your eyes, fall out, or even scratch your corneas. I tried contacts once before I knew I had dry eyes, and I couldn't tolerate them. They always fell out.
I hope you have gotten something useful out of my ramblings. If you have any other questions about dry eyes, I am your woman. Since I've suffered so much with this, I have learned everything I can about it. I am very happy to share my knowledge. Ask away.
Good luck with everything,
Elyse
P.S. I learned this lesson the hard way: NEVER, NEVER, NEVER, ALLOW ANYBODY BUT AN EYE DOCTOR TO TREAT YOUR EYE PROBLEMS. DON'T GO TO A "REGULAR DOCTOR" TO TREAT YOUR EYES. THEY KNOW NOTHING! (You wouldn't go to an eye doctor for strep throat, would you?)
Thank you Elsyse for your response. I really appreciate it. I am feeling so low and it helps to remember that there are others out there in similar boats if not worse. I read on WebMD's Dr Lloyd's column (the opth) that once the lacrimal glands have been damaged either by inflammation, medications, trauma, radiation etc, that their function does not come back. That hovers like a fog over my conscience making me depressed that I did this to myself with that one bad infection. Oh, and the fact that I treated the opposite eye (the one without the inf) to be proactive I thought, just kills me. I am guilty for doing this to myself and now I probably am doomed to a lifelong consequence. grrrrr.
It is too bad Restasis did not work for you. How did you know you were allergic to it? Have you tried Refresh Endura as well? I guess it has similar make-up. I'm not sure whether I should stay on the Restasis. It burns. I did make an appt with a new opth for next week. Of course, I'll have to go through all my history again, but I'm hoping for a better "connection" this time around. As much as I love my optom. personality- I don't quite understand his thinking in returning me to contacts. Kind of contradictory, I think.
Can you tell me about Diquefosol?
I will definitely ask about my tear quality and quantity.
Thanks again, I will write again later when time affords it.
you know what is weird...i think i was prescribed that medicine for my eyes, and that's when I began having probs with dry eyes..is it a steroid eye drop?
Nope, it was straight up Tobramycin antibiotic drops. I had a really bad pink eye that cultured out strep pneumonie. I wish now, however, that I had been given something else. I had inquired about a systemic (oral) antibiotic, but oh no........couldn't have that. Strep pneumonie can be deadly if its in your lungs so I wanted to be sure that I wasn't harboring it anywhere else.
Why and when did you develop problems and are they still plaguing you and to what degree? Hope you don't mind all my questions.
When I had dry eyes the Dr. told me to use pm fresh at night and thera tears 3x's a day. This helped me greatly. The thera tears are one of the best eye drops in my opinion. They took 20 years of research to make these the closest eye drops that are very similar to your own natural tears. These 2 products are available over the counter so you don't need a perscription. I hope this helps someone.
Different people have different reactions to medicines. The Tobramycin might have been great for somebody else, but for you it may have caused more problems. The thing about Tobramycin is that it is a good antibiotic for eye infections, but it's not used too much anymore because there are so many other, newer ones out there. I have been on it twice. Once it was prescribed by my General Practicioner when I had my first case of pink eye, and did not have an ophthalmologist available to go to. The infection went away, but I was still having a lot of problems. It is hard to differentiate between what is an infection and what is an allergy. Still not feeling well, I went back to my GP. He prescribed something called Neomycin ointment. He said he wasn't sure if I was still infected or not, but thought that would take care of any residual bacteria. But I got SOOOOOOO much worse on it. I immediately got out the phone book and started calling every ophthalmology office in town until I got somebody who could see me that day. I went to the office not even knowing the name of the doctor I would be seeing, and thinking that I would only go to this guy once, and then when my family's ophthalmologist got back from her vacation, I would go back to her. Well, within 5 minutes of having met him, this doctor made such an impression on me with his knowledge and expertise and caring, that I knew I would never go to anybody else as long as I lived. He told me that my eyes were no longer infected, I was having a very bad allergic reaction to the Neomycin ointment. He gave me allergy drops and tear drops, and also told me how severely dry my eyes were (are). I told him that a few months ago I had tried contact lenses, but they kept falling out of my eyes. He told me that my eyes are too dry to wear contacts, and wanted to know what quack prescribed them for me. It was actually three doctors that allowed me to wear them. My original ophthalmologist, and two optometrists who measured my eyes and fitted me. And nobody ever said to me "hey, your eyes are dry, don't get contacts."
Anyway, after trying plugs several times and having no luck (they kept irritating me and falling out) I ran into much more severe problems. December 24, 2001 I developed a severe ulcer in my right eye from the dryness. My eyes were so dry that just by blinking, I created a sore and rubbed off a section of the first layer of my cornea. Conventional antibiotics didn't even touch the infection that I had. I had to get fortified Tobraymcin drops and Vancomycin drops. Vancomycin is the antibiotic that they give in the hospital to people with Pneumonia and other deadly infections. My doctor called and called and called until he found a pharmacy that could make it into an eyedrop. I was on those drops for over a month, around the clock. Then it took another month of regular anti-biotic drops. Then, about two weeks after stopping the anti-biotics, we were in the process of cauterizing my tear ducts. But I got a corneal abrasion anyway. Same eye, just a different spot. Luckily I was able to use regular antibiotics for that. Soon after, all 4 of my tear ducts were permanently closed by cauterization. That helped the problem of lack of tears immensely. But it won't do anything for my tear quality. There is help for people with a lack of tears. The Restasis certainly could help you.
I even tried a form of Cyclosporine befor Restasis was approved. I was allergic to that too. But since Restasis was a different compound of cyclosporine, we thought I should try it. I am allergic to that too. My whole face gets red and my eyelids swell. My eyes itch and burn and look awful. Diquafosol is a drop that is supposed to stimulate the production of the oily and fatty layers of tears, which would tackle the problem of tear quality. It is still in the trial stages.
Have you tried plugs?
If you are not allergic to the Restasis, you should at least give it the full 6 months. It does help some people.
It is probably true that once the lacrimal glands are damaged they don't produce tears like they should, but don't let that WebMD doctor scare you. It doesn't mean that there is no help, or that your eyes will never get better.
Have you been tested for allergies? A lot of people have seasonal allergies that can make their eyes dry. It's a big contributing factor for me. I also have auto-immune problems, which can make your eyes dry as well.
I hope that you love the new ophthalmologist and that he can help you. Let me know how it goes.
Elyse
Last edited by purple2067; 07-24-2004 at 03:10 PM.
Oh, and I use Refresh Endura as well. But we found that too much of it bothered my eyes, so I only use it 2 or 3 times a day, as opposed to the Bion Tears which I use about 6 times that much!
Thank you especially, Elyse.
For someone who doesn't have very good eyes, you seem to spend a lot of time at the computer.
No, I don't have plugs, but I may be exploring them.
I was wondering about you....do you wear glasses now? I guess you must since you used to wear contacts. I am wondering if there is a special kind of glasses out there for dry eyes. Maybe some kind of a wrap around kind/and or sunglasses that would help to alleviate wind and sun etc. I am also looking into Transitions just for ease in going from regular glasses into automatic sunglasses mode. (obviously those wouldn't be wind resistant though) I have worn contacts for 20 yrs- so the thought of possibly no more contacts for the rest of my life is making me re-look into the best prospects for glasses. Some people on here are so dismayed and upset about being told that they should not wear contacts again. And that is fine....that it how they feel. However, I would be happy as a clam if I could just find comfort. Glasses are fine, bring them on!! That is most important to me. Looks ain't everything in life
You mentioned in your post something about allergies or perhaps being tested. My question to you is this..........(since you are so knowledgable) Can a person develop an eye allergy (mid life) that causes dryness, gritty, red eyes that DO NOT tear?? That is the kicker that I can't figure out. Like you said that your eyes tear a lot, but that the quality (lacking the mucus and oil) still causes dry eye. I know that that can be true. But doesn't an allergy mean that there is some type of histamine reaction that causes watery weepy eyes? That is the only kind of allergy I knew about. Maybe there are others. I have not asked a Dr about allergy. I will at my appt this week. I have heard that Patanol is good for allergies. I have never had an allergy of any kind, to a med or to the environment. I have been suffering since mid May though, but I attributed it to the Poymixcin and Tobramycin that I was on. Maybe I'll never figure it out.
Thank you for writing about your eye history and woes. I sympathize wholeheartedly.
Yeah, I tend to write long answers, but if my response is going to be as long as some of the ones I've posted here, I do it in installments! I copy and paste what I've typed into microsoft word and come back to it at a later time. Plus, I type very fast. It usually only takes me about 5 minutes to post one of these long responses. I haven't been on the computer at all for the last 2 days because I am having my own little crisis at the moment. Both eyes have been feeling exceptionally bad the past few days. I may have been having an allergic reaction to this preservative free, all natural eye mist that I tried. So I've had to use a steroid ointment to help with that. And when I went to the eye doctor today, he discovered the reason that my left eye, in particular has been so painful. I've got 7 or 8 micro-abrasions on the surface of my cornea. So I'm using anti-biotic drops and cold compresses. And the best advice that my doctor could give me to keep my eye(s) comfortable is to "lubricate, lubricate, lubricate!" I'll go back in a week for a follow up to make sure it's all healed.
Staring at the computer for long periods of time is definitely not recommended for people with dry eyes! I've also got a flat screen monitor which is supposed to reduce glare and eye strain.
In response to your question, you can definitely develop an eye allergy later on in life. I never had eye problems as a kid. Maybe once in a blue moon I would get a little hayfever and have to use an allergy drop for a few days. But it was never anything more than that. Most people think of watery eyes when they think of eye allergies, but I have had extensive conversations with my doctor on this very topic! He says that allergies can cause dryness because histamines can cause inflammation which can make your lacrimal glands become inflamed. Then you get more allergens in your eyes (dust, etc...) and since you have no tears to wash them out, they just sit there and cause more of an allergic reaction which causes less tears to be produced. That's how I understand it, anyway.
To respond to your other question, yes I wear glasses now. I couldn't tolerate the contact lenses. I tried them for about 2 weeks and could not take it anymore. I have the transitions lenses in my glasses. I got them when I started having a problem with bright sunlight. They help me a lot.
Well, I'm off to use another cold compress. Feel good!
Sorry to hear about your micro abrasions. I hope the cold compresses and the antibiotics help that.
I appreciate your responses.
I saw a new opth yesterday and was a bit disappointed in that I asked when I scheduled for an extended appt time since I had a lot of notes and history to review. I had seen her partner before, but was looking for another opinion and a more pleasing bedside manner. I got neither. A 10 minute (or less) appt on her on-call day. It was very rushed, but she did stain my eyes and tell me that the dryness appeared more mild, however, that did not mesh with how I've been feeling. I'm dry as a bone. My lids feel like rubber with sandpaper in them. She told me she understood my stopping Restasis at 7 wks. She said in her practice, it is 50/50 or even less for improvement with Restasis. She put me on Doxy 100mg twice a day for 1 month. That seems like a very short time, but she wants to re-evaluate then. I'm not tickled pink to be on antibiotics because I really doubt I have a meiobian problem. I started to cry a little bit in her office (this has been an emotional struggle for me) so she could see my lacrimal glands work on reflex....although diminished output a little) but the problem seems to be with my accessory lacrimal glands. The ones that provide continuous moisture. Elyse, do you think the plugs will help with that? I am having them inserted next week. I'm so worried that this is permanent (the dryness prob), but the Drs never can say either way. If you have had plugs can you explain the procedure to me? I'm having the lower ones. I bet they will be uncomfortable. Will they stick out like little spikes?? I've heard that infection is a possibility. I would hate for that to happen. Please advise if you would.
So that is all. I'm to keep up the lubes. She recommends Refresh Endura as well as the other Refresh brands. She probably gets a kick-back from Allergan. Haha Then, get the plugs and try the Doxy. I also made her aware of a supplement I am trying called Bio Tears which has all the omega 3 and 6 and lactoferrin stuff in it. Could be a gimmick, but it's worth a try (Geeez- when I think of the amount of money I spend now on drops, copays, ointments, supplements.....ugh)
Hope you are feeling better. Thanks for listening to my problems.
Inserting the plugs is a very very simple, painless procedure. Your doctor really should have told you about it. It's amazing how some doctors just have no bedside manner, and lack compassion. I realize what a true gem my own doctor is, and how lucky I am to have him. And to think, that I only found him by looking in the yellow pages! So much for relying on recommendations!
Anyway, I have had plugs in all 4 of my ducts. The only problems that I found with them were that they continually fell out, because the longer they are in, the more your skin stretches around them, and the looser the hold on them becomes. My doctor had to keep trying larger and larger sizes until they eventually wouldn't stay in anymore. He also told me that sometimes a miniscule amount of tears can seep out around the edges, but I did not have the smart plugs. Smart plugs are new and were not around when I needed plugs. They are different from silicone plugs because isntead of sitting on the surface of the tear duct near your eye, they go all the way down in your duct and mold to fit your body. The dissolve in 3-4 months and have to be replaced. They're also harder to remove than regular silicone plugs because they are all the way down.
I'm guessing that all plugs are inserted in the same way. The doctor numbs your eye with drops and takes a small, tweezer-like tool to push them into your tear duct. You won't feel anything except for some pushing. If you have the regular silicone plugs and not the smart plugs, you will feel them for the next few days, every time you look to the right or left. But that will go away once you get used to having them in your eyes. They can be removed by the doctor (just by squeezing the tear duct) if it becomes a problem for you. I don't know how the smart plugs feel. They won't stick out like spikes. If you have anything but the smart plugs, you'll be able to see them because they'll be clear and shiny, but they won't stick out. They'll be flat. Infection is a very very rare possibility. With regular silicone plugs, they could just be removed and the infectiob treated. I don't know what they do with the smart plugs, because they are harder to get out.
Yes, I think that the plugs can help with any lack of water, even if it is caused by the accessory lacrimal glands. The idea is just to keep whatever tears your eyes do produce in your eyes! If you're lucky, you might even have a problem with some overflow of tears down your cheeks immediately after you get the plugs. Your eyes have to adjust to not having the tear ducts.
And don't feel bad about being upset about this situation. I have cried over it many times. (but actually, being that we only produce reflex tears when crying, my emotional tears have actually washed out the "good" tears with the oil and mucus, and made my eyes even drier!) I have cried in front of my doctor and cried on the phone to him. But he can handle it. He always knows how to make me feel better. He basically just tells me "don't worry, we are in this together, I'm going to take care of you." It's so important to have a doctor that you feel comfortable talking to. If you felt like your doctor was annoyed that you were crying, or only using your emotional tears as a measure of your dryness, then this is not the right doctor. You need to have somebody compassionate, who will talk to you. If you're going to be emotional about it (who wouldn't be?) you need to have a doctor who is understanding and able to deal with that.
I hate feeling rushed when I am at the doctor's office. I have gone through a lot of doctors before I found the bunch that I have now. Sometimes I have a long wait in the eye doctor's office. But I never mind, because I know that he is just giving the other patients the same standard of care that he gives to me. With any doctor, if I have got 20 questions to ask them, I am not leaving until they answer them to my satisfaction. My primary care doctor has got a great sign posted in his waiting room. "If you leave here with unanswered questions, you have done us both a disservice." I say ask away! If they turn to walk out and you still have more questions or concerns, you've got to tell them "hey, I'm not done yet. Get back here!" (If they're getting paid for this visit, they ain't leavin until I'm done!"
I know all about the expenses of this situation! I happen to be luckier than most because my uncle is a pharmacist and owns his own small pharmacy. Every couple of weeks I get a case of about 10 boxes of tears and all the ointments and supplements that I need, for wholesale cost. And my doctor is such a great guy, he refuses to charge me copayments. Even when I didn't have health insurance, he would see me as much as I needed and refuse to charge me for the visit. So, I buy him presents!
But the copayments for prescription drugs certainly add up! (Walgreens isn't as nice as my uncle, and he's too far away to get my prescriptions from!) It's gotten up to over $200 a month on eyedrops and copays for prescriptions. I swear, why does it cost money to be sick?
Well, I hope you are feeling better. My eye is much better today with the anti-biotics.
Hello again!
I was out of town for a few days. My eyes didn't feel so bad during the day (mild burning, I guess you would say) but the nights are the worst. From the time I start washing my face to get ready for bed- they just seem to feel bone dry- like my lids are rubber against an ocular surface with no moisture. It's awful. I force cry sometimes just for temp. relief. I had to use ointment several times during the night. I also think the petrol. jelly/mineral oil stuff irritates my eye somewhat. Are there other nighttime ointments out there with different ingredients? I used to try Refresh Celluvisc at night and although it is refreshing at instillation, later it drys to an uncomfortable crust on my eyes. I hate that.
Anyway, Elyse, thank you for your response. I wish I were lucky enough to pull an opth MD name out of a hat like you did and get so lucky. (out of a phone book, that is) I took your email to heart and since I didn't feel exceptional chemistry with the new opth last week, I have decided to seek out one more. This one is from a new office. The two I had previously seen worked as partners. I did not care for the "cattle call" patient rotation. I am supposed to explain all aspects of my dry eye syndrome in a 10 minute appt?????? You've got to be kidding. No wonder no one wants to administer a Schrimer's test- that takes 5 minutes in itself??!!
I have also decided to postpone the plugs until after I see what this new Dr says. He is a Lasiks surgeon which is probably most of his practice. Not sure if that is good or bad, but I know he deals with dry eyes a lot. However, I DO KNOW that my type is considerably different. (not surgically induced) This will be my 3rd opinion (actually 4th if you count my optom) I took the Doxy 100mg for 1 wk and felt like it was irritating my stomach at night. Also, not sure, but it seemed to make me have a dry mouth as well. Yuck! I guess I'm not very good with RX patient compliance. I quit the Restasis at about 6 wks as well. Wonder what will happen if I don't use anything (except tears) and my oral eye suppliment? I have been on that 1 1/2 wks and the manufacturer says that most people notice improvement in about the 3rd week- so I am keeping my fingers crossed......like a fool probably. But I'm desperate.
I am compiling questions for the appt this Thus. I wonder why nobody has mentioned a steroid ointment or drop?? The optom said that even Patanol can sort of halt inflamm symptoms (but what if not allergy driven?.... and I doubt that it could be)
Also, before getting plugs, I have more questions. This way, after the three Drs, I can make a decision as to which one to continure care with. If I see any more than that, my insurance (I always need referrals) might be getting suspicious.
Well, that is all from this dry eye camp. I hope yours are stable and all the micro abrasions are healed up. If you get any closer to finding out about the new drug Diquefosol (sp?)- please let us all know. I know you will? Are you back East -maybe New York area? I get that impression. I am in Washington State. It has been 90 degree unusual weather here and I am "drying up."
oh man, i depend on restasis every day. 2 drops a day every day.. i used to be on lotemax also but my doctor switched me to just restasis because it is not a steroid. maybe if you used a steroid it upset your eye? a side effect of restasis is dry eyes and feeling like you have something in it (which i had to get over, so i could get rid of my infultrates that i got from a bad bad bad bad case of pink eye) maybe you should talk to your doctor about the side effects if he didn't inform you, hope this helps!!!!!
Hi-
I'm confused. Do I understand correctly?? A side effect of Restasis is dry eyes??!! How can it be doing anything positive then? Did you find the Lotemax helped? I have not been on any kind of steroid for the eye ever. I'm just wondering why that road was never taken (or given to me as an option?) How long have you been on Restasis? If it helps you, when did you notice?
Also, I KNOW that my eye problems began with my eye infection. I was taking two drugs. Polymixycin and Tobramycin. The first didn't seem to have effect before switching to Tobra. I wish I had never taken them. For lack of more medical scientific talk, "They totally screwed with my eye glands."
What are infultrates?? and I would be intrigued to hear about your story. Thanks
I never heard that Restasis could cause dryness. Then what is the point in using it? I tried it too, but had a severe allergic reaction to it. My eyes got extremely red, and my eyelids swelled and turned red. So, no more Restasis for me.
Amy, the reason that nobody has recommended steroids for you is because they are a last resort. I totally understand that you feel like you have tried every option and that you are ready for a last resort. Anybody who has lived with dry eyes for even one day would understand that. But you've got to try everything else first. I had my dryness for at least a year before we experimented with steroids. And while they may help with the symptoms, you've got to be sooooo careful with them. They can cause your intra-ocular pressure to go up (in some people this can happen after just one dose) and this can cause glaucoma or damage to the optic nerve. You have to be followed very carefully by your eye doctor while on them. There are some non-steroidal anti-inflammatory drops, such as Patanol and Elestat (which are really allergy drops but have anti-inflammatory qualities to them as well.) There is also Voltaren. I tried that, and had an even worse reaction to it than I did to the Restasis. I put one drop into one eye and then sat there and POURED tears in by the gallon because it hurt so bad. But not everybody will have the same reaction as me. My doctor says that I am the most unique patient he has ever seen, so chances are that NOBODY will have the same reaction as me! Restasis is also another non-steroidal anti-inflammatory drop that works for some people. But it doesn't work overnight, and that's what we all wish would happen.
For me, there is just such a huge difference after being on ocular steroids for a few days. My ocular surface becomes much less inflamed, and my eyes are less red and not so sensitive and irritated. But because of the harsh side-effects, I can't be on them for more than a few days. So whatever progress I make is short lived. There was a time last year when I was on an extremely strong steroid, dexamethasone, for several months. But eventually my intra-ocular pressure started to go up, so while we were very happy with what it did for my dry eyes, I had to kiss it goodbye forever. I miss it very much, but my doctor has to be conservative. He refuses to allow me to use it anymore because I'll develop vision problems, and I agree with him. In fact, I was very upset and am still very nervous when he told me that I have to use FML, which is a much milder steroid (but still strong) for at least 10 days to get rid of the problem I'm having now.
But I do have to say that my eye feels much better since I started using it. I'm not talking about the dryness though. That would take several weeks. It just feels much less irritated and over a few days the surface will become much less inflamed, which will allow my abrasions to heal. Sigh, it's all so complicated.
So even if a doctor recommends steroids, be very reluctant to use it. Use it if you have to, but be careful. It's nothing to play around with, and I will get off of them as soon as I possibly can.
Yep, Drs seem real reluctant to try a steroid. How come they so often prescribe Tobradex (not Tobramycin) for infections though?? It must be only comprised of a small amount of steroid. I'm still gonna ask about steroids tomorrow when I see the the new opth. Perhaps, my kind of dry eyes isn't all that inflammatory. Maybe that is why the Restasis didn't kick in quicker. Who knows!! I didn't give it all that long a trial, but then my eyes seemed to get perpetually drier and drier (almost like another poster mentioned) That new Diquefosol is supposed to be helpful for those even without an inflammatory process going on. What is the hold up? Why 2006?? I see where they were just about to release it in either 2003 or 2004. I'm desperate for options, as I know you must really be, Elyse. I'm glad your eyes are feeling better on the FML. Feeling better NOW is a good thing. Your Dr seems like he is taking good care of you and looking out for you.
Ugh! I can't stand the burning and last night my eyes were stuck shut every time I rolled over. I hate this.
Yes, my doctor takes VERY good care of me. He is my greatest advocate. He truly is looking out for my best interests, as he does for all of his other patients. I'm lucky to have a doctor who I have a good relationship with. When he's examining me, he is never rushed. I always feel like I am the only one in the office and for those 20 or so minutes I am his only concern. There have been times when I've needed a more extensive exam and he'll have 12 patients in the waiting room. Pretty much he just tells me that they can wait, he's with me now. That's why I never mind having to wait for him, because I know that he's just giving the other patients the same standard of care that he gives to me.
My eyelids stick together at night too. I also wake up severely dry. I use tears ointment in my eyes at night and that helps my eyelids to not stick together so much. There are a few different ones. I must use preservative free only, so I prefer HypoTears ointment or Tears Naturale PM lubricant eye ointment. I also like tears Again gel. I use Tears Again Gel Drops during the day when my eyes get really bad. Unfortunately all we have are these mediocre treatments though. No cure.
We've talked about Diquafosol and the most that anybody knows right now is that the FDA is holding it up for more clinical trials. Apparently the company was all set to release it, but hadn't done the amount of trials that the FDA wanted. They requested permission to use an earlier study, but they were turned down. So it's going to take longer. I wanted to get in on one of the trial studies, but they are only being done in North Carolina (Duke University) and you are right Amy, I am in New York. I'm desperate for it to come out already. But I don't want to get my hopes up either. Everyone, including me, thought Restasis would be the "miracle drug". We waited and waited and waited for it to come out, and now it turns out that it is not the great cure we were all waiting for. For some people it works great, but it doesn't help everyone. I'm not going to get my hopes up again only to possibly be let down. I have a very cynical view, but after all this time and all the different treatments I have tried, it gets a little discouraging. I'll find out more about it in September when I go down to Maryland to see the eye specialist at the Wilmer Eye Institute. He's one of the world's leading dry eye specialist. My doctor met him a few times and decided I needed to see him. His name is Dr. Terrence O'Brien. He's very very good, and really nice. He is involved in all the latest studies, etc....
It just seems to me that the treatment that I need, whatever it may be, has not been invented yet.
for me, the point of restasis is to get rid of my infultrates i got from a bad case of pink eye. i tapered off a strong steroid which was a name i forgot, and then to lotemax (which is a steroid) and then to restasis which is not a steroid. the answer to your question aj about when did i notice it started helping was when my vision cleared up. i'm not sure why you are using restasis.. if you said you were. I know there are things you can do for dry eyes and next time i go to the doctor i'll probably remember what this one flyer said. i go back in about a week and a half. another side effect is feeling like there's dirt or an eyelash (anything) in your eye. it sucks, i know.
Last edited by LooksLikeRain; 08-05-2004 at 09:15 PM.
Keep searching until you find an ophthalmologist who you trust and feel comfortable with allowing him/her to treat you. An optometrist is good, but most don't know as much as ophthalmologists do about medical conditions of the eye, such as dryness. You can always contact your local teaching hospital or medical school and speak with the department of ophthalmology. Find out who is their very best corneal specialist and/or dry eye specialist and see him. I'm really good at doing internet searches for doctors. If you tell me where you live I might be able to help you find someone. 
That is most important to me. Looks ain't everything in life 
