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Hi, :wave:

Welcome to the Board! :)

I am sorry for the long post, but I have a lot of information for you, which I hope you will find useful.


I know exactly what you are going through. I don't wear contacts, but I have extremely bad dry eyes and eye allergies. Are you seeing a corneal specialist or just a regular ophthalmologist? A few months ago I had such a severe ulcer in my right eye from dryness that I was on specially made anti-biotic drops for almost 2 months. And then right after that I got a corneal abbrasion in the same eye. I know how painful it can be. My doctor told me that I can not wear contacts because they will scratch my cornea. Plus, I had tried them before, and they kept on falling out because I did not have any tears in my eyes.

You may want to try going without the contacts for a few days and see if that doesn't help with the ulcers you are getting. It could be the contacts that are scratching your cornea. Plus, if you are wearing contacts, unless you are taking them out whenever you put the tear drops in, how are the tears getting to the surface of your cornea? The same goes for all other drops.

I have tried Tears Naturale also. Are you using Tears Naturale, or Tears Naturale FREE??? You should always make absolutely certain that you are using preservative free tears, because if you are using them as often as every hour (and believe me, I used to use them 2 or 3 times an hour, so I know how you feel!), the preservative can definitely irritate your eyes even if you are not allergic to it. Some other very good tear drops are Thera Tears, and Bion Tears, both of which come in preservative free forms. There is also a BRAND NEW tear drop called Refresh Endura. It is supposed to have all of the components of natural tears, including the mucin layer. They are manufactured by Allergan. I am not sure if they are available in S.Africa yet, as they just became available in the US a few weeks ago. You are supposed to cut out the use of all other tears (I haven't been able to do that though) and use these only 4 times a day. However, my dr has got me using the Endura 6 times a day, as well as Thera Tears 6 times a day, because my eyes are way too dry to only use tears 4 times a day.

Are you using any sort of allergy drop? Patanol is probably one of the best. You can experience dryness from allergies.

Have you ever thought that maybe you are allergic to your contact lenses, or contact lens solution? Make sure that is peservative free also. Yes, you are right about the contacts protecting your eyes. I had to wear one for almost a month when I had the terrible ulcer. It sort of acted as a band-aid. But only the dr was allowed to take it out or put it in (I was there every single day anyway)


What about using a tears ointment, such as Tears Naturale PM eye ointment (can be used throughout the day even though it says PM) or GenTeal Lubricant Eye Gel, or Bausch and Lomb MoistureEyes? I find that I like the Tears Naturale Ointment the best.

Also, have you ever tried having your tear ducts cuaterized? It is one step above the plugs. I have posted a lot more information about this procedure under "help, I need some relief". There you can also read about all of my eye problems and what I have used. I have found that since the cuaterization, my usage of tear drops is way down, and my eyes are less dry. Now I just have to contend with my SEVERE allergy eyes. Plus, one of my tear ducts opened up after he cuaterized it, so now I have to get it done again. Regardless though, it is a much more permanent, and much much better solution than plugs for people with severely dry eyes. Also go to this website for more information on eye disorders in general. I think there may also be some info there on cuaterization.
[url="http://www.oculartimes.com"]http://www.oculartimes.com[/url]

Have you ever tried using steroid drops in your eyes? If you have ulcers or abbrasions, then you absoultely cannot use them until they are healed, because they can inhibit healing. But if you have no errosions in the surface of your eye (ie abbrasions, ulcers), then you can use them under the supervision of a dr. Some of the more popular ones, beginning with the least powerful and ending with the most powerful, are Alrex, Lotemax, FML, and Dexamethasone. Those might help stop the itching and redness. Btw, FML = Fluorometholone,
and Dexamethasone usually only comes in the form of TobraDex (Tobramycin and Dexamethasone). In the US there is a pharmacy where I can order plain dexamethasone ointment from for myself.

Also, have you ever thought that maybe there is something in the soap you are using, food you are eating, etc... that you could be allergic to that might be causing this? Think back to when it first started, and try to remember if you made any changes in anything. Have you moved recently? Could there be mold in your house? (you should check that outm even if you haven't moved recently) Could you have environmental allergies? Also, how many times have you been tested for Sjogrens? Sometimes it takes several tests before you get a positive result. Ask the dr to test you for it again.

Unfortunately you cannot get steroid drops or allergy drops that are made preservative free, unless you have them specially made by a "compounding pharmacy" that specializes in ophthalmic drugs.

Good luck, I hope I have been of some help.

Sincerely,
Elyse
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[This message has been edited by purple2067 (edited 10-01-2002).]
Hi purple2067

Thank you very much for your reply.

At the moment I have seen only opthalmologists and not corneal specialists. I don't think you get corneal specialists in SA. I have tried going withoiut contacts for 2 weeks. The problem with this is that as soon as I take my contacts out, my eyes become extremely painful and bloodshot. After 2 weeks i couldn't handle the pain anymore and gave up. I am not using any drops at the moment. I have tried every kind of drop available and they all seem to make my eyes worse. I have tried sleeping with the gels and ointments in my eyes however when I wake up my eyes are red and painful. I am unable to get Thera Tears, and Bion Tears here but I will try and source some of them from the US. I will also find out about Refresh Endura.

I have never used any allergy drops exept for similasan which made them worse. The opthalmologist said that I am probably allergic to my lenses but he insisted that I continue wearing them and use eye drops. I have also never tried steroid drops as nobody has ever prescribed them to me.

I have been tested for sjogrens twice and both times it was clear.

I will be immigrating to Sydney, Australia in a months time. This poses two possibilities. The first one being that I will be living at the coast which should be better for my eyes. The second one being that I will try new opthamologists which might have better solutions.

Looking forward to hearing from you.
Bryn
Bryn, I do not know if one can use steroid drops with contacts. But I am going to be picking up my prescription for FML (my new best friend) pretty soon, and when I get it, I will look at the package insert that come with it. That should say whether or not you can use it with contacts. But you know, if you use a steroid drop for a few weeks, you might not even NEED contacts anymore. I also have severe itching, and it helps a little bit with that (it's the only thing that has ever helped with it), and my dr says that if I weren't using steroids, my eyes would be very very red. They are usually just a little bit red, or sometimes they are even white, even though they don't feel very good. But at least it saves me the embarassment.

I have the same problem as you, I don't produce enough Mucin. So far, I have not noticed a big difference with the Endura, and either does my dr when he looks in my eyes, but the question that always remains is "if my eyes are THIS bad now, how bad would they be if I weren't using it?" I just don't know. I am going to give it a few more weeks and see what happens. Plus, I just had the cuaterization re-done on one of my eyes, so right now it is very very irritated and nothing is really helping. But it always gets like that for a few days after the procedure. And before I had it done I couldn't tell if the Endura was helping either, because it wasn't under normal conditions (my tear duct was supposed to be closed, and it had opened). So far, there is no "WOW" effect. I don't see a big difference. But I would encourage you to try them, because they are supposed to be the best, and everybody is different. Plus, I have allergy eyes besides, so that makes it so much worse.

It's great that you have a friend who can get you everything. My uncle owns a pharmacy and gets me all of my tear drops at wholesale prices. That really helps a lot! And yes, my eye dr is absolutely wonderful. I even know other doctors who go to him and say he is the best they have ever seen. He is the most caring dr I have ever met. When I go through a problem, he literally goes through it with me. It's not just my problem, it's his problem too, and that makes me feel very good.

Today my eyes are not feeling too good, but I have my good days and my bad days too.
:eek: you said the "U" word! :nono: we don't say that word around here. :)

Yeah, right now I don't have one of those, and I think that I am taking the right preventative measures to ensure that I don't ever get one again. (measures such as using tear drops around the clock, using steroid drops, and seeing the doctor often for check-ups.).

As far as no prescription drop helping you, I am sorry, but I find that hard to believe. Maybe here in the US we have other things available to us, but there has got to be SOMETHING that your doctor can try. Have you brought up short term use of steroid drops? They can really really help with redness and inflammation (although if you do use them, be prepared for your eyes to burn pretty badly for a minute or two each time, when you first put them in.) Why isn't your doctor even willing to TRY? And I hate to say it again, but the whole POINT of going to an allergist is to find out what you are allergic to.

I really don't mean to sound like I am preaching, and please tell me if I am overstepping my boundaries, and I will shut up. But I must tell you that finding out that you are allergic to something is NOT a bad thing! Isn't it better to know if you are allergic to something that could potentially be causing you harm, rather than to keep eating that food (or using that medicine, or breathing in that air) that you are allergic to? Do you need your eye docs permission to go see an allergist?? All the allergist can do is help. An allergist can potentially even help you figure out which eye drops you are allergic to, or which contact lenses you are allergic to (by testing you for certain chemicals). Why is your eye doctor so dead set against you seeing an allergist? If the allergist tells you that you are allergic to something, and then later on figures out that you are also allergic to something else, then GREAT! At least you will know!

Regardless of what your eye doc says about the subject of an allergist, what do YOU think about it?

I, on the other hand, have some good news. Well, sorta. I found this website (can't post it here) where you can ask physicians a question. Any question. They have forums for every type of medical disorder. It costs $10 though. But I figured, at this point, what have I got to lose? So anyway, I posted a really long question detailing my whole experience, and I wanted to know where to go from here. I asked if there was anybody else that I could go and see just for a second opinion. Well I got a very interesting response. Not only did they tell me about a few oral medications that could help me with my auto-immune disorder, but they also gave me the names of two drs who are the top specialists in the country in the field of dry eyes. I will be making an appointment very soon to go and see one of them. Unfortunately I will have to travel about 4 hours by car and stay overnight, but it is worth it.

Something that I can tell you about that might help you, is that they told me that taking something called "Flax Seed Oil" in capsule form, can help with tear production. It is an over the counter product and you can get it online, or at any health food store or pharmacy. I am not sure if it would be available to you though. I am going to look into taking it myself. Also, they asked me if my eyelids close completely during the day and more importantly, at night. Do your eyes close completely?

I hope I have been helpful, and please forgive me if I was a little pushy with the allergist thing. I don't mean to be bossy or rude. I just hate to hear that you are suffering so much, and your dr doesn't seem to be going out of his way to help you. (again, if I am wrong, please correct me.)

Take care, and keep me updated!
Elyse
Hi Chinchilla! Hi Bryn! :wave:

Chinchilla, I have never heard of the allergy drop that you mentioned. It is either not available here in the US, or it is sold under a different name. Do you know the chemical name for it? (it should say it right under the brand name on the bottle). Have you ever heard of Patanol (Olopatadine). It is one of the best allergy drops you can get. Also, Livostin (Levocabastine) is a very very strong allergy drop, and sometimes helps relieve some of my itching. The thing that helps me the most is FML (Fluorometholone) drops. Also, Dexamethasone is very good. For me, the only thing that helps even the slightest bit is the FMl and the Dexamethasone, which are both steroid drops. I have been on the FMl for about 6 months, on and off, and the Dexamethasone for about 2 months.

Also, if you have dry eyes, have you had your tear ducts cuaterized or plugged? I am very fortunate not to have GPC. It sounds absolutely awful. However, I have the worst dry eyes that my dr has ever seen, and I have severe corneal problems from that, so I know all about eye pain. I have had my share of it. (I don't think there is any pain worse than eye pain.)

Do you try putting in any tears ointment to lubricate your eyes? What about cold compresses to bring down the inflammation? (I live on them!)

I am glad to hear that you have a good doctor, and I hope that Bryn will be able to see him when she gets to Australia. Btw bryn, when are you leaving?

I know how important it is to have a good doctor, and I just love mine.

Have either one of you tried using a warm air humidifier to moisturize the air in your homes? That has really helped me a lot.

Good luck,
hope to hear from you both soon,

Elyse

P.S. Bryn, I think it is really great that you are trying to stop wearing your contacts. You'll never know if it will work if you don't try.
Thanks Chinchilla, you sound like a really sweet person. Yeah, unfortunately I do have to battle this all the time. But thank heaven, I have found an absolute saint of the doctor, who it seems is willing to go to just about the end of the earth to make me better. I am glad that you can avoid this by not wearing contacts. I had tried wearing them once for a few weeks, before I was diagnosed with all these problems. And gee, I always wondered why it was that my eyes got so dry when I put my contacts in, and why they would never stay in for more than a few minutes at a time without falling out! Little did I know.... My dr says that I should never have been prescribed contacts in the first place. The only time he will use a contact lens with me is if I have a problem and my eye needs to be protected, and even then, HE is the only one who puts it in or takes it out!

I cannot imagine wearing contacts for weeks at a time. No way. My eyes would hate me for that. I could never do it.

The Bion Tears are the ones that I use too. I love them. Thera Tears are also another good brand, but for me, they were not as soothing as the Bion Tears. Also, have you ever tried refridgerating your tear drops? Oh, that makes them nice and cold, and they feel soooo good when going into they eye. Ahhhh. Make sure that all of the tear drops/rewetting drops that you use are preservative free. Another very good tear drop is Refresh Endura. You can only use it 4 times a day according to my dr (although mine is so bad that he has me using it 6 times a day, and the bion tears as much as I need), and in a few weeks it is supposed to build up in your eye and replace your own natural tears. It also has all 3 tear layers in it: Lipids, Aqueous, and Mucin. Most tear drops only have one or two of those components. I still like my Bion Tears the best though. And FML (flurometholone, steroid drops). FML is my best friend. It gives me the most relief out of anything.

Oh, and I found out that in the US, Albalon-A is sold as Naphcon-A, an over the counter allergy eye drop. It used to be a prescription drop, but now it is not.

If you go to the following address, you can find out the ingredients, side effects, brand names, of any medication. I'll tell you the names of some of the better prescription allergy drops, so you can find out the ingredients and see if there is anything like available to you. You can also use it to look up the medications that you are using now.
[url="http://www.nlm.nih.gov/medlineplus/"]http://www.nlm.nih.gov/medlineplus/[/url]

You might want to search for Patanol, Alocril, Optivar, Zaditor, Livostin, all of which are allergy drops, and Alrex, Lotemax, Tobradex and FML, all of which are steroid drop. Tobradex is Tobramycin, which is an anti-biotic, and Dexamethasone, which is a steroid. Also, there is something called Cyclosporine, which is a medication thatis usually taken orally or by IV for internal problems, but when used as and eyedrop, it can reduce inflammation and possibly help to increase tear production. It is not a steroid. It needs to be made in a special, compounding pharmacy. It might do you some good to look into it. It is still not widely available in the U.S., and I have to order it from a pharmacy that is a few thousand miles away from my home. You can also get plain Dexamethasone from them. The only things that really help me a lot are the Dexamethasone and the FML, and when I was using it, the Livostin.


Good luck, and I hope you get to feeling better soon.

Elyse
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