Hi all

I am 27 and from the UK. I have been told by my opthalmologist that I have extremely dry eyes (fortunately at the moment - no corneal abrasions, although I am using drops at least every half hour). This is most likely due to a course of low-dose accutane I was on. I came off it because of the terrible side effects.

I have also been put on steroid drops as they are very red and inflammed. The steroids (prednisolone 0.5) actually seem to be making my eyes redder and it burns when I put them in. Ive only been on them a couple of days but surely the redness should be decreasing a bit. I thought steroids worked very quickly, or should I just give it a few more days.

Grateful for any advice received.

Many thanks.
Niki.

It sounds like your eyes are just so irritated that any drop that you put in them (other than artificial tears) is going to burn. I suggest that about two or three minutes before you use the steroid drop, you use the artificial tears. That way you are making sure that your eye isn't dry before you put in the steroids. Drops burn much more on eyes that are dry. You also need to give the steroids more time before you make your decision about whether or not they are working. Sometimes they can take a week or two to really reach their full effectiveness. I am an old pro at this. I use steroid drops for my severe dry allergy eyes too. I have been doing this for about four years now and they do help a lot, but for me it's never going to be "normal" again.

Since your eyes are already so irritated, anything you put in them will probably make it worse. I have dry eyes and I use something called Nature's Tears. It's an eye mist that you spray, and it's just water with no preservatives or anything else added. It will moisten your eyes, but won't irritate them. Hope this helps!

Hi again,

I was wondering, how long have you been having dry eyes? did you use contact lenses before.? or do you have any allergies? Well, in my case it's really wierd, I never used contacts, or neither did I have any sickness which could cause this. The only thing that I have is slight allergies against hay? so earlier, about 3 years ago, I had infections that occured often, and I handled them by myself using anykind of drops from the pharmacy. Now luckily after getting all my 4 ducts closed I don't have any infections. Just last week I was at the eye doctor, and he said that my eyes are extremely dry. Some one told me not to use eye drops all the time, cos your eyes can get use to it, and your eyes won't make any effort to make tears by it self, is that true? well I don't believe this
What really bothers me is the fact that most of the eye specialists I've been to are not taking the "Dry Eye" very seriously. One even said: "Why are you here again? you just need to use eye drops every hour", which is really annoying when someone says that to you. How long can you do that? now at nights before going to bed, I wash my eyes with warm salt water, to clean my eyes, cos having all four ducts closed, eyes can catch dirt, which won't get off your eyes easily, so your eyes are "Dirt catchers". I also have droopy eyelids, when they get really dry. So I massage them everyday for about 15 minutes. And I actually, follow a very good diet, eating carrots, fish (omega fat which helps to produce tears), and extra vitamins. And I try to drink 3 litres of water, which is enormous amount, well I try to. I've experienced that drinking that much water, can actually give you the feel, that you don't have to use drops that often. Well, my life is always sourrounded with this "Dry eye" problem.

P.s:I regret the fact that I haven't been to the eye doctor earlier when I got these eye infections. Now I know: ALWAYS HANDLE YOUR EYES CAREFULLY! never ever do self medication, that makes things only worse!


Regards
Shahara

Your experiences with doctors sounds just like mine. No doctors in the UK pay much attention to dry eye problems unless you are really severe and have ulcers/abrasions etc. My problem with this is why do we have to wait till we reach that stage before we get some help. Ive seen doctors on the NHS and paid privately to see them and to be honest you get much the same attitude. Maybe putting drops in every half hour is ok if your a pensioner and have little else to do - but I am 28 years old and have a busy life, its just not practical. Having said that - if it helped me and made my eyes feel more comfortable then I would happily do it - the point is it doesnt. I told the last doctor that 5 mins after putting drops in - they feel horribly dry again, and he just said 'well, they shouldnt' !! and that was it! I dont care what I 'should' be feeling, I want someone to take notice and aknowledge what I actually AM feeling! It is extremely frustrating.

There is so much more knowledge of dry eye in the states and some really good specialists - I have even considered going over to see someone, but at the moment I cant afford it - still paying off the other appointments.

I asked the question about your eyes not producing their own tears if you're supplementing them so often - and he just said that wasnt how it worked. When you think about it though - there is logic there, if the drops tell your eyes they are lubricated why would they produce more tears? I dont know about this - and I dont think the doctors do either.

Hi Nikijo,

Well, I guess we both are going through the same problem, I luckily do not have any corneal abrasions? is that how you call it, my english isn't that good. I think I'm even getting into depression, due to this eye problem. Just yesterday a friend of mine asked me to come to a party with her, and I couldn't, cos it had been a very bad "Eye day" for me. They got tired, even though I poured eye drops every 15 minutes or so. Someone asked me recently, how can dry eyes bother you so much? isn't it just like having dry skin??? well, I wish it was so easy, to put in eye drops, and I won't get this horrible dry eye feeling for at least an hour. But that won't happen, just after 10 minutes I get this dry scratchy feeling again. It drives me really nuts. At times I look really sick or tired. I can't stand this anymore. I CAN't!!!!
Well, if this get's much worse, I've decided to live in Sri Lanka, where I probably might not have that much problems due to the high air humidity.
Or I'd just live near the sea or something

you've asked how I've ordered this Restatis, well I called a international pharmacy and they are ordering it for me from the states.
Nikijo, I wish you the best, maybe you'll find somekind of medication that will help you. I know it isn't easy having kids, and running a household, and then to always think about putting eye drops, every minute.

Take care, and keep in touch


yours
Shahara

Is this international pharmacy in Germany? Ive never heard of them - did you need a prescription though?
Thanks

Hi there,

well, international pharmacies are in every city, you surely will find out, do U live in London? I did try to find it through internet, but I couldn't see any place where I could order it, so I just looked in the "Yellow pages" and I found a "International pharmacy" where they order certain medications from abroad. Yes I've asked my eye doctor to write me a private prescription. I'll get it in a few days
Wish you the best


Regards
Shahara

Hi again,

I forgot to ask you another thing. I guess you know that there are 3 layers on our tear film, so, if one of these layers don't exist or is not covering up properly, we get the dry eye. I never got this "Shirmer test" done. If we know which layer is broken, does it help if we use the appropriate medication for it. For a example, if my oily layer is not there, would using oily stuff help?, I don't know, but I was wondering, I guess not, cos as I can see, so many have used and tried different kind of things which don't really help in the long run. Well, I was just wondering

Shahara

Hi

Im from the UK, im new on here but i post on another dry eye forum all the time. Hi nikki.

I can second everything that nikki has said, and i can relate to everything you have said shahara. I am 21 years old from the UK and have been suffering with bad chronic dry eye for over a year now.

Sahara: you must have more knowledeable doctors on dry eye in germany than we have in england (who know squat) if he has persricbed you restasis? We have an international company which can import restasis as well but the problem is the doctors look at you blankly when you ask for it, and you dont get any where, i have been to many specialists and get the same response. They dont take dry eye seriously and keep telling me it will go away on its own. I concur with you-drops only last 5 minutes at best and even thats only to wet your eye not make a normal level of comfort and at 21 it is certainly not practical to apply drops every 10 minutes of my life. which i keep telling them- but they just dont get it! Probelly like nikki said they typically see elderly patients that may not mind doing this and also may not know of any better treatments out there. So just accept what the doctors say more than young people who typicaly turn to the internet.

I know what you mean people just think its the same as 'DRY SKIN' and i think thats where alot of the problems come from over here. Dry eye is so poorly defined. And also this gives the impression that dry eye is a diagnosis on its own, which its not. Dry eye means not enough tears, but if you havent got enough oil but enough tears, your eyes are not dry 'in the real sense' and go undiagnosed. beacause not enough oil produces the same symptoms as not enough tears. But most specialists in europe only test tear production. and they tell you nothing is wrong. If i tell people the problem is MGD (which i think my problem is) i get alot more sympathy than if i say dry eye.

I have now given up with doctors in the UK im flying to New york at the end of the month to see Dr Laknay. To get restasis and doxy and a better diagnosis.

maybe in the future doctors in europe will start taking dry eye seriously and stop playing down the pain it causes, you would think that being eye doctors they should know that after all the cornea has the most nerve endings per small area than any other small area in the body and constantly has lids wiping over these nerves, so any slight disfuction in the delicate tear film is going to cause discomfort, let alone if there is alot of disfunction.

I am curious if any of you have worn contact lens?

Hi SKi11,

well no I haven't worn contact lenses. My dry eye came after having eye infections due to allergies, and using the wrong medication to handle them

regards
Shahara

Its interesting reading about those like me who live in the UK, I've seen Opthalmologists both on the NHS and privately, and the biggest problem I have had is convincing them that I am suffering! The last Opthalmologist I went to said he didnt think there was any problem at all! Then why are my eyes sore & red? I'm 25 and had my problems for almost 1 year. I dont know why eye specialists here seem so unhelpful.

I too, have seriously considered going to the States for an opinion, I'm pretty fed up with the UK at the moment. The only worry is that I could spend a lot of money going there only to be dissappointed once again. I am also becoming frustrated by people around me (family, co-workers) who dont seem to understand in the tiniest bit how life altering it is to have this problem. I spoke to my Occupational Health department recently about taking time off work because of the discomfort, and they just gave me a blank expression as if I had said something stupid like "I cant work today as I left my brain in the blender..."

Nik

PS has anyone from the UK tried going to Moorfields Eye Hospital in London? I've been there 3 times and I fail to understand why it has a "worldwide reputation".

I know exactly what you're saying - and I bet Im not the only one.

Im also planning on visiting the states later on this year. This doctor in NY is supposed to be very good and apparently has dry eye problems himself - so he should be able to sympathise much much. The last doctor I saw said my dry eye was 'mild' the doctor before that said it was 'severe' - Where does that leave me then? Its pathetic. Going to the US may seem extreme to some people but when you've exhausted all your options this side of the pond what is there left - you have to help yourself. Because honestly, unless your eyes are about to fall out - the docs here dont give two hoots!

HI Nikijo.

did you get to order restatis? I was just wondering. I just used to using restatis, since yesterday. I was scared, cos some told me that Restatis could cause sideffects that could last longer. But I didn't yet feel anything, luckily, I'm usually allergic to almost everything. I don't think I can use Restatis for very long, cos it really is very expensive. So, hope to hear from ya

Regards
Shahara

hI np1981

Welcome to the club! yes the biggest problem i am having to is convicing them that i am suffering as well. i have been to a moorfileds eye doctor at the time he was at harly street, and i agree if hes an expert in the area we might as well give up now! i dont know what the rest of moorfields eye doctors are like but he was really unsympathetic and said there was nothing he could do gave me steroids and sent me on my way! what did moorfields do for you, what have you been given for your condition? have you tried to get restasis? who did you see at moorfields? I tried to get restasis for 10 months have now given up, hopefully get it from the states now.
Moorfields hospital is probally has a worldwide reputation becuase of the other eye problems that it successfully treats, but not dry eye like everywhere else!

My eyes have felt really awfull for over a year now, they constantly have some sort of symptoms and the symptoms can be very delberating and have a knock on effect on your mental well being as well. They all say my eyes dont look that dry, or i dont have dry eye, or i do have dry eye, i do have dry eye but the main problem is more allergies (i dont have any allergy symtpoms and never had a problem with eye allergies before my eyes got dryed out from anti depressants). All the schimmers ive had have been different, ive had one TBUT test which indicated that i have bad evaporative dry eye, but the doc dissmissed this reading saying TBUT tests were unreliable. thats not what ive read!

Hi sazy101

I've been to Moorfields 3 times (the first was to the primary care dept) and they did the usual tests (schimmers etc) but said that they can only suggest I try various brands of artificial tears. They didnt actually say what they thought the cause of the dry eyes was. Unfortunately I had already tried all of their suggested drops (Blink, Refresh Contacts, TheraTears etc, etc, blah, blah, blah) but apart from that, nothing else practical. One suggestion by a Mr Daniel was the use of a "bandage lens" which I'm not sure about. But I guess its one of those things I'll end up trying out of desperation. I now only go to Moorfields for NHS appointments, but I'm looking elsewhere for real solutions.

I understand what you say about getting different answers all the time, I find the same. When I first had problems over a year ago they were convinced I had allergies and suggested Opatanol. It made No difference at all. Now others say there is NO sign of allergic conjuntivitus and ruled it out with a skin test, which showed I had no sensitivity to anything. I've also had different results on the Schirmer's test ranging from low to "adequate".

If TBUT tests are unreliable what do they do them for?? The main problem is that for a more detailed analysis of our condition, it seems you have to search far and wide (eg the States) to find anyone who does more specialised testing. I am not convinced anyone in the UK is willing to take on the problem and work with you to get back your life. However if anyone on this board knows of anyone, please let me know who!!

Nik

TBUT (Tear break up tests) are quite reliable - they show how quickly your tears break up. It the schrimers that means nothing! and yet they all rely on it so much.

HI there Nikijo,

got Restasis yet? just curious.


Bye
Regards
Nikijo

HI there again,

I was at the eye doc. day before yesterday. she asked, : Are you sure Restasis will help you, we haven't got any study's about it here in germany?,"". I was quiet surprised, hasn't she ever heard about internet or magazines, Or about study's that are done abroad? Well, sometimes, you just have to do research by yourself, if the doc's aernt able to advice you properly. All I know is that Restasis is in the states since a while now, and I've heard that it does work, not only by reading about it in the internet, but a relation of mine is using it since 2 months now, after having severe dry eyes for 7 years. Her condition got very much better just after 8 weeks. That's quiet quick, cos I know that it normally takes months to make a change. But anyway, I'll try it for a few months, if my financial situations allows me to. There isn't any thing else in the market. Bye!! take care dry eyers

Regards
Shahara

NP: Yea its not what you want when you have paid to go to a specialist for help to just advised to use artificial tears. The fact that you have reached the stage of going privately means that your not new to this problem and youve allready exhausted all the artificial tear options under the sun. You dont need to pay x amount of money to be given what you could easily get your self and havent had any help from. I bet if they had bad dry eye they would want to get they wouldnt be happy with just using artificial tears.

I think your talking about a scleral lense. they are a option for severe dry eyes..i might consider them as a last resort but my eyes may not constitute severe enough.

The TBUT are reliable, more so than the schimmer tests any way. they are not invasive and only involve counting and wacthing dye. He was talking crap TBH coz i dont think he liked the diagnosis of 'dry eye' for some reason, probaly coz its hard to treat when theres nothing they can give you. just a hunch.

I think most docs in the states do the to standard tests, but here only a few do TBUT like the moorfields one who said he does the most advanced tests. By that i think he ment he does a TBUT test rather than just a schimmer. hense, he was aslo the only one who hinted that i might have evaporative dry eye.

I read that doxy helped you are you still using it? what type of dry eye do you have and what do you think was the cause?

S

I was prescribed Doxycycline and found it did make a difference, I think it was the anti-inflammatory effects of the drug that has helped. I've been on it for 1 month, 100mg/day. I know its usually used for MGD, but I never had any signs of MGD.

I'm still not sure whats causing the dry eye. One thing that the doctor at Moorfield mentioned was the possibility of my eyes opening partially during sleep, and drying out. This may explain why my eyes feel worst first thing in the morning. But despite using ointment (Lacri-lube etc) it hasn't made a difference. He said research shows that during REM sleep the eyes move in a vertical up/down motion, which can cause the eyelids to partially open and then stay open afterwards (about 1mm). But I havn't found a practical way around this yet.

I suspect that if I can get through one night without dryness, and wake up the next day with clear eyes, I can probably get through the day without needing any drops (hopefully).

The issue I have with schimmer/TBUT tests is that results vary depending on when you have them. I've had the standard tests done over the past year with differing results. I saw an Opthalmologist in the Midlands once who did these tests and they all came back normal. But he said that tear production can normally vary during the day, and reduce during the night. So he suggested I keep a bottle of drops with me an use them when I feel discomfort - which isnt very practical because I feel discomfort all the time and drops do nothing anyway!

N

I hear ya! - Im not sure If I might sleep with my eyes slightly open as my eyes are always parched first thing in the morning - whereas getting a good nights sleep always used to refresh my eyes.

As for Lacrilube - I dont know if youre still using this but I think its awful stuff, like putting vaseline in your eyes - and they still feel the same in the morning anyway. There is also many who think that using these thick ointments affect the osmolarity of your tears and can actually make your eyes worse with time. If you need a thicker drop at night use celluvisc or a gel like genteal or somthing. Much gentler.

I have had different schrimmers tests depending on a number of factors - main one being whether or not they use anaesthetic when they carry it out. If they dont, which my last doctor didnt, then it tests for reflex tearing as well as basal tears - its not very reliable, nor relevant.

NP how old are you? Its strange that you have this for no apparent reason (especially if you're young). If you think its the nighttime and this sleeping issue that is causing most of your problems why not try a night time goggle like tranquil eyes? You have to get them online but Im thinking of getting some to try - see if it helps make your eyes feel more moist in the morning. They dont look that bad either - just like wearing a sleep mask. If your eyelids not closing are the culprit - these should help.

SAHARA - Nope! not got restasis yet - Im looking to see when is the earliest I can travel to the US. Dont think Im going to get it any other way - and Im determined too because Im positive it will help me. Keep us posted how you get on with it? Just curious, this doctor that told you she'd never heard of it or seen any studies - was she the one who wrote you the prescription?

Take care all.

Hi i have no signs of MGD either but this is what i think i have. becuase my schimmer is not to bad. I have been confused as to where this is coming from. But someone recently (who is also young) off another site saw dr plugfleder in the US and he advised him that he thinks he has MGD but with no blocked glands, which is called primary MGD, having bloked glands secondary MGD. with primary mgd there is no blockage that you can see to express the glands, instead they are not producing enough oil in the first place. He perscribed him doxy, to try and get the glands flowing, so this might be why it helped you. I thought that this might be my problem but gave up on the idea when one doctor i saw said i didnt have it becuase i had no signs of blocked glands, but if one of the top dry eye experts has said this can happen- im going to believe the top dry eye expert!

My eyes are really bad on wakening so I tested the theory that i suddenly started sleeping with my eyes open, i thought the same that if i could stop them drying out in the night, they would be better in the day. i taped them one night and i wore swimming goggles another night. but had no difference. I think that blinking makes oil flow better and when you have a low tear break up rate and not blikning when asleep, theres going to be less oil flowing through. Some people have a problem where they sleep with eyes partly open, but ive never heard of REM being a cuase, guess its possible. as soon as i have my eyes closed for 10 minutes i can feel the dryness.

Hi all

I am 27 and from the UK. I have been told by my opthalmologist that I have extremely dry eyes (fortunately at the moment - no corneal abrasions, although I am using drops at least every half hour). This is most likely due to a course of low-dose accutane I was on. I came off it because of the terrible side effects.

I have also been put on steroid drops as they are very red and inflammed. The steroids (prednisolone 0.5) actually seem to be making my eyes redder and it burns when I put them in. Ive only been on them a couple of days but surely the redness should be decreasing a bit. I thought steroids worked very quickly, or should I just give it a few more days.

Grateful for any advice received.

Many thanks.
Niki.
Hi,

I hve dry eyes from Accutane also. IT's been 6 months since I've stopped the drug. Can you tell me if your dry eyes got better over time? Are they still dry?

I'm hoping that this will go away as it hurts very much despite doing everthing that my opthalmologist has suggested.

Thanks