Are all dry eyes really incurable? (important for roaccutane sufferers)

[teddy1324]

‘There is no cure for dry eyes’. This is the only statement I can recall delivered with either unanimity or confidence by many of the ophthalmologists and optometrists who cheerfully pocket my poor mother's money, suggesting in return more hot compresses or increasingly glutinous over-the-counter-lubricants. In my experience, they usually inform me of the chronic nature of my condition only after performing the same inconclusive tests and providing vague, often wildly varying diagnoses short on meaningful detail. To the inexperienced ear, this waffle sounds meaningful, but I have concluded that, in reality, their explanations are generally designed to make the average punter feel like they've got their money’s worth.


Even the specialists who agreed that I have an insufficient lipid layer following roaccutane ‘therapy’ four years ago have, after peering at my eyes, (usually with furrowed brows and pursed lips to give the impression that they'’re thinking something enlightening and profound) all announced that I have meibomian gland ‘"dysfunction."’ Most, I have noted, have done so without even properly examining or expressing the glands themselves.
This is a frustratingly imprecise diagnosis. What do they mean by Meibomian gland ‘"dysfunction?’"


Clearly the oil producing glands in my eyes have been rendered dysfunctional by this apparently indiscriminate drug; the purpose of which is, after all, to shrink the oil producing glands in the skin; that much I gathered intuitively, even four years and a half years ago as a seventeen year old. I was paying these very well qualified men in the hope that they may be able to establish the way in which they had been rendered dysfunctional, rather than to vaguely confirm their dysfunctionality. Were the glands atrophied? Blocked? Does the issue lie in what the meibum consists of? Every doctor I have seen - and I have seen some of the big names in British Ophthalmology - has no answers to those questions. Clearly out of their depth, they respond either patronisingly or with more vague answers and nebulous waffle; one in particular said that although he didn't think they were blocked, he thought they looked too 'pristine'. Occasionally I am pleasantly surprised to find they admit they don'’t know.


I decided to find answers elsewhere, and so, on Monday, I underwent a lipiview examination. The purpose of lipiview is to establish the thickness of the lipid layer on the eye, and to provide a numerical score indicative of the level of dryness. Under 75 is abnormal, below 50 is severely dry. I scored 52 and 51. Representing the thickness of the tear film numerically seemed arbitrary and too susceptible to extraneous factors to be precise, and is pretty dubious when a low score is required to 'qualify' (it's your lucky day!) for a treatment which fleeces sufferers of £1200. Nonetheless, it suggested some kind of lipid deficiency, as I had long suspected.


Of more significance to me were the images taken of the glands themselves, which revealed them to be perfectly intact; as they ought to be in a 21 year old. The cause of my low scores were, the lady concluded, the visible blockage of the meibomian glands in my lower eyelids. She recommended lipiflow to me, which is designed to heat and vigorously ‘milk’ the meibomian glands in order to unblock them. I underwent the procedure immediately, despite my cynicism.
During my treatment I was was told once again that my condition as incurable; lipiflow may only improve my symptoms because dry eye is chronic.
This makes no sense to me intuitively.

It is not unwarranted for most people to be told that their dry eyes are incurable. That is because most dry eye is caused by an underlying disease or condition which itself is chronic and incurable. For example:

• Autoimmune disorders, such as Sjogren's Syndrome, Lupus, or Rheumatoid Arthritis,
• Ocular Rosacea
• Disruption of the neural feedback loop caused by damage to nerves after LASIK
• Physical damage to/atrophy of the meibomian glands - perhaps due to contact lens use or incomplete blinks/nocturnal lagopthalmos.
• Menopause
• Old age

Most people who suffer from dry eyes suffer from one or more of the above. I, mercifully, do not. The only circumstance in which I could expect to suffer dry eyes permanently is if my meibomian glands had been atrophied irreversibly by roaccutane, which I had long suspected.

But the images taken by Lipiview have established that this is not the case. Why, then, should I expect further MGD after my glands are unblocked by lipiflow? Why wasn’'t I told lipiflow would simply unblock the glands and would allow me to live my life as I had between the ages of 1-17?
When I asked the lady this question, she had no answer and just asserted again that ‘dry eye is a chronic condition.’ My main ophthalmologist concurred that this was the case.

While I fully expect them to be right, and I am not anticipating this to have any discernible, let alone permanent, effect on my eyes, the question I have is why? I am one of the few exceptions to the rule the rule that dry is caused by an underlying incurable condition. Since the imaging, no one has suggested my glands have been damaged in any way and I'm neither diseased, old, or menopausal - so why am I then told what seems to be a non-sequitur: that my condition will continue to be chronic? Could it be that though ostensibly they look normal that the meibum quality has been affected permanently in some way? After all, if my glands are now unblocked and totally intact, why are they still dry? (Roaccutane has no documented effect on aqueous tear production)

I hope someone more intelligent and better informed than me can provide some insight or theory that may help me in looking for a solution that, I hope, may be permanent after all.

TLDR:

Why, when I have no underlying incurable diseases causing my dry eyes, and my meibomian glands are perfectly intact (just partially blocked), am I told my condition will be chronic? Should I give up on trying to find a cure? While it is true that most people’s dry eye cannot be cured due to underlying incurable disease, I can’t shake the feeling that this intuitively doesn’'t or shouldn'’t apply to my case since I don’t suffer from any of them and I’m only 21. If it does, what can I conclude about what roaccutane has done to my glands in order that the condition is chronic when it hasn’t atrophied them? Is it possible that it has affected the quality of the secretions? That’s the only thing I could conclude, other than Aqueous deficiency (and there is no evidence roaccutane causes this).

[savino]

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[Mazza818]

I don't think there has been a study done how accutane affects gland secretions. There are multiple things that can be causing your dry eye and the truth is the majority of doctors don't know how to pin point the cause. You could have lost polar lipids, you may be producing oil only from the glands that are blocked and the others aren't secreting any or enough oil. You could be dealing with allergies. You took accutane but considering the state of your glands maybe the drug is not the cause of these problems. However there is certainly a strong connection between the people who took accutane and have blocked glands. Blocked meibomian glands are no different from acne when you think about it. It's just acne of the eyes. Why don't you buy a good mirror count your glands and check which ones are producing oil? My advice would be stop relying on doctors so much.

I think that a person with blocked glands should be having an effective heat treatment (not homemade warm compress) done every day so it keeps the oil flowing. Has this ever been tried in order to successfully treat DES? Probably no. Because our misery puts money in their pockets. The major part of dry eye is inflammation. I had a perfectly healthy lipid layer (TBUT > 20 sec / meibomian seborrhea) until an allergic reaction to two antibiotics completely destroyed my eyes (TBUT 0) in about 3 weeks. So even with having all glands open and secreting normal oil the inflammation alone was bad enough to cause severe dry eye.

After 2 years of hell I actually discovered the cause of my dry eye of which doctors know nothing about because it's not even an eye problem but a skin condition (not rosacea).

Hi Savino

First of all I am interested to know what the cause of your eyes were? You said you it was a skin condition that was causing the dryness and inflammation to eyelids; I am keen to know I might have the same issue.

Second; I have been suffering from dry eyes and quite inflammed eyelids 6 months after taking accutane for acne. I have never had issues with my eyes or any discomfort prior to taking this drug. From my research online It seems like most of other dry eyes sufferer they have all taken this drug 'roaccutane/accutane' at some point. I think its definitely the drug.

I am 28 now and I started taking the drug when I was about 21/22, that went went for about 6/8 months I think before I stopped. Only recently I underwent lipiflow and that has improved the amount of oil flow. I can see increased oil flow, the glands were compressed too manually by the doctor. He said the glands were blocked abit but the glands look healthy; they are not dead and If I maintain it well I should have lasting result. I am now putting warm pads and compressing my glands daily at home. I am happy with the oil flow and amount of oil being produced. However the inflammation of the eyelids is still there, improved little but not a lot. I am only 2 weeks post treatment, it may get better a few weeks after treatment.

In the hidsight; I WISH I NEVER TOOK THOSE ACCUTANE IN THE FIRST PLACE. I would have much rather had acne than this. thats for sure.

dry eye sufferer

[Mazza818]

‘There is no cure for dry eyes’. This is the only statement I can recall delivered with either unanimity or confidence by many of the ophthalmologists and optometrists who cheerfully pocket my poor mother's money, suggesting in return more hot compresses or increasingly glutinous over-the-counter-lubricants. In my experience, they usually inform me of the chronic nature of my condition only after performing the same inconclusive tests and providing vague, often wildly varying diagnoses short on meaningful detail. To the inexperienced ear, this waffle sounds meaningful, but I have concluded that, in reality, their explanations are generally designed to make the average punter feel like they've got their money’s worth.


In my experience, even the specialists who agreed that I have an insufficient lipid layer following roaccutane ‘therapy’ four years ago have, after peering at my eyes, (usually with furrowed brows and pursed lips to give the impression that they'’re thinking something enlightening and profound) all announced that I have meibomian gland ‘"dysfunction."’ Most, I have noted, have done so without even properly examining or expressing the glands themselves.
This is a frustratingly imprecise diagnosis. What do they mean by Meibomian gland ‘"dysfunction?’"


Clearly the oil producing glands in my eyes have been rendered dysfunctional by this apparently indiscriminate drug; the purpose of which is, after all, to shrink the oil producing glands in the skin; that much I gathered intuitively, even four years and a half years ago as a seventeen year old. I was paying these very well qualified men in the hope that they may be able to establish the way in which they had been rendered dysfunctional, rather than to vaguely confirm their dysfunctionality. Were the glands atrophied? Blocked? Does the issue lie in what the meibum consists of? Every doctor I have seen - and I have seen some of the big names in British Ophthalmology - has no answers to those questions. Clearly out of their depth, they respond either patronisingly or with more vague answers and nebulous waffle; one in particular said that although he didn't think they were blocked, he thought they looked too 'pristine'. Occasionally I am pleasantly surprised to find they admit they don'’t know.


I decided to find answers elsewhere, and so, on Monday, I underwent a lipiview examination. The purpose of lipiview is to establish the thickness of the lipid layer on the eye, and to provide a numerical score indicative of the level of dryness. Under 75 is abnormal, below 50 is severely dry. I scored 52 and 51. Representing the thickness of the tear film numerically seemed arbitrary and too susceptible to extraneous factors to be precise, and is pretty dubious when a low score is required to 'qualify' (it's your lucky day!) for a treatment which fleeces sufferers of £1200. Nonetheless, it suggested some kind of lipid deficiency, as I had long suspected.


Of more significance to me were the images taken of the glands themselves, which revealed them to be perfectly intact; as they ought to be in a 21 year old. The cause of my low scores were, the lady concluded, the visible blockage of the meibomian glands in my lower eyelids. She recommended lipiflow to me, which is designed to heat and vigorously ‘milk’ the meibomian glands in order to unblock them. I underwent the procedure immediately, despite my cynicism.
During my treatment I was was told once again that my condition as incurable; lipiflow may only improve my symptoms because dry eye is chronic.
This makes no sense to me intuitively.

It is not unwarranted for most people to be told that their dry eyes are incurable. That is because most dry eye is caused by an underlying disease or condition which itself is chronic and incurable. For example:

• Autoimmune disorders, such as Sjogren's Syndrome, Lupus, or Rheumatoid Arthritis,
• Ocular Rosacea
• Disruption of the neural feedback loop caused by damage to nerves after LASIK
• Physical damage to/atrophy of the meibomian glands - perhaps due to contact lens use or incomplete blinks/nocturnal lagopthalmos.
• Menopause
• Old age

Most people who suffer from dry eyes suffer from one or more of the above. I, mercifully, do not. The only circumstance in which I could expect to suffer dry eyes permanently is if my meibomian glands had been atrophied irreversibly by roaccutane, which I had long suspected.

But the images taken by Lipiview have established that this is not the case. Why, then, should I expect further MGD after my glands are unblocked by lipiflow? Why wasn’'t I told lipiflow would simply unblock the glands and would allow me to live my life as I had between the ages of 1-17?
When I asked the lady this question, she had no answer and just asserted again that ‘dry eye is a chronic condition.’ My main ophthalmologist concurred that this was the case.

While I fully expect them to be right, and I am not anticipating this to have any discernible, let alone permanent, effect on my eyes, the question I have is why? I am one of the few exceptions to the rule the rule that dry is caused by an underlying incurable condition. Since the imaging, no one has suggested my glands have been damaged in any way and I'm neither diseased, old, or menopausal - so why am I then told what seems to be a non-sequitur: that my condition will continue to be chronic? Could it be that though ostensibly they look normal that the meibum quality has been affected permanently in some way? After all, if my glands are now unblocked and totally intact, why are they still dry? (Roaccutane has no documented effect on aqueous tear production)

I hope someone more intelligent and better informed than me can provide some insight or theory that may help me in looking for a solution that, I hope, may be permanent after all.

TLDR:

Why, when I have no underlying incurable diseases causing my dry eyes, and my meibomian glands are perfectly intact (just partially blocked), am I told my condition will be chronic? Should I give up on trying to find a cure? While it is true that most people’s dry eye cannot be cured due to underlying incurable disease, I can’t shake the feeling that this intuitively doesn’'t or shouldn'’t apply to my case since I don’t suffer from any of them and I’m only 21. If it does, what can I conclude about what roaccutane has done to my glands in order that the condition is chronic when it hasn’t atrophied them? Is it possible that it has affected the quality of the secretions? That’s the only thing I could conclude, other than Aqueous deficiency (and there is no evidence roaccutane causes this).

Hi teddy1324

First of all i hope you get relief from your dry eyes.

I think there hasnt been a lot of studies or research into dry eyes therefore doctors dont often have all the answers to dry eyes. I have been to many eye doctor and specialists they have all said they couldnt see anything wrong with my eyes couldnt understand why i had dry eyes; told me there was no cure but to use lubricants for the rest of my life. I kept going on and on with my research and going to different doctors; I was finally recommended lipiflow.

I think there hasnt been enough studies on dry eyes because it affects very small number of people; and no one has ever died from dry eyes as oppose to cancer for example or any other dieseas. so there hasnt been a huge focus on dry eyes. it sad and unfortunate but i think thats the reality.

[teddy1324]

Hi teddy1324

First of all i hope you get relief from your dry eyes.

I think there hasnt been a lot of studies or research into dry eyes therefore doctors dont often have all the answers to dry eyes. I have been to many eye doctor and specialists they have all said they couldnt see anything wrong with my eyes couldnt understand why i had dry eyes; told me there was no cure but to use lubricants for the rest of my life. I kept going on and on with my research and going to different doctors; I was finally recommended lipiflow.

I think there hasnt been enough studies on dry eyes because it affects very small number of people; and no one has ever died from dry eyes as oppose to cancer for example or any other dieseas. so there hasnt been a huge focus on dry eyes. it sad and unfortunate but i think thats the reality.

Hi Mazza. I'm about 9 days post lipiflow and think that I can feel a difference in my left eye in terms of the amount oil I'm producing. Do your eyes still feel 'dry' now that you have increased oil production, and is the inner eyelid inflammation the only symptom you still have? I too have red inner lids, but I think they're just a side effect of having permanently dry eyes for the past four years. It causes a lot of friction.

[Mazza818]

Hi Mazza. I'm about 9 days post lipiflow and think that I can feel a difference in my left eye in terms of the amount oil I'm producing. Do your eyes still feel 'dry' now that you have increased oil production, and is the inner eyelid inflammation the only symptom you still have? I too have red inner lids, but I think they're just a side effect of having permanently dry eyes for the past four years. It causes a lot of friction.

Hi Teddy

Good to hear the lipiflow has helped you abit.

I am now 2 weeks post lipiflow and no doesnt feel dry as much now; just the inner eyelid inflammation is still there. I do feel bit of friction too; it could well be the reason as you have mentioned. Before lipiflow however the dryness was a lot more; it would feel gritty and sometime it felt sticky it was that dry, now my blink is felt more smoother and i feel alot less friction.

I am also doing warm massages daily; putting warm pads in the microwave to warm up and apply them on eyelids for about 5 mins and then gently pressing on my eyelids with fingers. Doctor advised me that lipiflow helps open up blocked glands, it has to be maintained by doing the warm massages. Just like your teeths, has to be looked after he said.

May I know where you did the lipiflow and did you at any stage in your life take accutane. Accutane/roaccutane is the main cause of dry eyes to alot of people apparently; I took accutane about 6 years ago and started having dry eyes ever since.

[savino]

Hi Savino

First of all I am interested to know what the cause of your eyes were? You said you it was a skin condition that was causing the dryness and inflammation to eyelids; I am keen to know I might have the same issue.

[Mazza818]

I will elaborate on it soon, I am 99% sure that I have found the cause. Treating it is turning out to be very difficult but I will keep trying. I have already successfully treated it but the side effects of the treatment are too severe Dry eye can be a result of a dermatological condition in many cases but ophthalmologists don't really know anything about this. Like I said plugged glands are nothing more than acne of the eyelids.

okay goodluck

[teddy1324]

Hi Teddy

Good to hear the lipiflow has helped you abit.

I am now 2 weeks post lipiflow and no doesnt feel dry as much now; just the inner eyelid inflammation is still there. I do feel bit of friction too; it could well be the reason as you have mentioned. Before lipiflow however the dryness was a lot more; it would feel gritty and sometime it felt sticky it was that dry, now my blink is felt more smoother and i feel alot less friction.

I am also doing warm massages daily; putting warm pads in the microwave to warm up and apply them on eyelids for about 5 mins and then gently pressing on my eyelids with fingers. Doctor advised me that lipiflow helps open up blocked glands, it has to be maintained by doing the warm massages. Just like your teeths, has to be looked after he said.

May I know where you did the lipiflow and did you at any stage in your life take accutane. Accutane/roaccutane is the main cause of dry eyes to alot of people apparently; I took accutane about 6 years ago and started having dry eyes ever since.

Hello Mazza.

My left eye felt 80% better today. It's very nearly perfect. I too feel the difference in the blink; where once it stung due to the friction, now it glides over my eye. It's such a relief. My right eye is still the same as it was before lipiflow, but for a period of a few hours today it felt the same as my left eye!

I took roaccutane at 17, and I am now about to turn 22. It was about four and a half years ago. I took 20mg/day for 6 months, which was half of the course I was supposed to take. I stopped due to my dry eyes.

How about yourself?

[Mazza818]

Hello Mazza.

My left eye felt 80% better today. It's very nearly perfect. I too feel the difference in the blink; where once it stung due to the friction, now it glides over my eye. It's such a relief. My right eye is still the same as it was before lipiflow, but for a period of a few hours today it felt the same as my left eye!

I took roaccutane at 17, and I am now about to turn 22. It was about four and a half years ago. I took 20mg/day for 6 months, which was half of the course I was supposed to take. I stopped due to my dry eyes.

How about yourself?

Hi Teddy

I took roaccutane for about 8 months i think; give or take. From memory it didnt bother my eyes that much at the time, may be because my focus was more on the acne rather than anything else. I stopped because I was happy with the improvement on the acne. It was shortly after that I started to notice alot of dryness on my eyes. Eyes were quite dry and looked quite fatigued and tired, swollen eyelids etc. Now i am about 16 days post lipiflow; as I have mentioned the oil is surfacing the eyes quite well now, but I am still having very inflammed/burning sensation on eyelids, specially the lower inner eyelids burns. Specially when I am going out to the shops or walk in the mall it feels like I am being capsicum sprayed on my eyes, it burns. That inflammation is going to cause dry eyes, I hope it will get better.

What is your experience of going out to the shops, do you get that burn feeling in the eyes?

[teddy1324]

Hi Teddy

I took roaccutane for about 8 months i think; give or take. From memory it didnt bother my eyes that much at the time, may be because my focus was more on the acne rather than anything else. I stopped because I was happy with the improvement on the acne. It was shortly after that I started to notice alot of dryness on my eyes. Eyes were quite dry and looked quite fatigued and tired, swollen eyelids etc. Now i am about 16 days post lipiflow; as I have mentioned the oil is surfacing the eyes quite well now, but I am still having very inflammed/burning sensation on eyelids, specially the lower inner eyelids burns. Specially when I am going out to the shops or walk in the mall it feels like I am being capsicum sprayed on my eyes, it burns. That inflammation is going to cause dry eyes, I hope it will get better.

What is your experience of going out to the shops, do you get that burn feeling in the eyes?

Over the years I had a lot of sensitivity to going outside too. As you say, it feels like someone spraying pepper spray into your eye or something! I'm almost certain what you're experiencing is the effect of corneal staining. Your corneas have been damaged from the dryness and are extremely sensitive. This can heal it you take good care of your eyes and use eye drops whenever they need them. This worked for me in the past to 100% alleviate the pain when I went outside. You have to allow some time for the cornea to heal though.

I still have very dry eyes upon waking up, even in my left eye which was better yesterday. Do you still have this issue?

Edit: just an update to say my left eye is back to being dry again today after a remarkable day yesterday. Very strange.

[Mazza818]

Over the years I had a lot of sensitivity to going outside too. As you say, it feels like someone spraying pepper spray into your eye or something! I'm almost certain what you're experiencing is the effect of corneal staining. Your corneas have been damaged from the dryness and are extremely sensitive. This can heal it you take good care of your eyes and use eye drops whenever they need them. This worked for me in the past to 100% alleviate the pain when I went outside. You have to allow some time for the cornea to heal though.

I still have very dry eyes upon waking up, even in my left eye which was better yesterday. Do you still have this issue?

Edit: just an update to say my left eye is back to being dry again today after a remarkable day yesterday. Very strange.

Teddy

Good to hear that the cornea is going to heal at some point later down the track, gives me hope. As far as the dryness of my eyes are concerend I think its consistent, like i said after the lipiflow its improved with the oil flow, but still abit dry and that dryness is consistent all the time. except when i go out or im exposed to cooling or heating fan that blows air into my eyes.

Even when i look at my eyes in the mirrow; i can see the difference prior to lipiflow; the eyes look fresher, more moist, and i can see oil surfacing the tear [oil flow]. You gotta remember you did ur lipiflow about 12 days now, doctors say you will really start to see the affect after 4 weeks, so hopefully you will see better results.

I am doing daily warm compresses at home; i was asked to do it twice daily by the doctor but I am only doing once daily. I am sure thats gonna help a lot too. dont just rely on your lipiflow. Has to be maintained i think. DO you do that?

[Klee]

Actually dry eye is experianced by many people. It also is big money for big pharma and many new treatments look to be on the horizon. All we have to do is get the doctors to stay on top of the subject. Im shocked how I have to tell them about dry eye. Dont they use their computers?

[teddy1324]

Teddy

Good to hear that the cornea is going to heal at some point later down the track, gives me hope. As far as the dryness of my eyes are concerend I think its consistent, like i said after the lipiflow its improved with the oil flow, but still abit dry and that dryness is consistent all the time. except when i go out or im exposed to cooling or heating fan that blows air into my eyes.

Even when i look at my eyes in the mirrow; i can see the difference prior to lipiflow; the eyes look fresher, more moist, and i can see oil surfacing the tear [oil flow]. You gotta remember you did ur lipiflow about 12 days now, doctors say you will really start to see the affect after 4 weeks, so hopefully you will see better results.

I am doing daily warm compresses at home; i was asked to do it twice daily by the doctor but I am only doing once daily. I am sure thats gonna help a lot too. dont just rely on your lipiflow. Has to be maintained i think. DO you do that?

Yes, I do; usually once a day but at the moment I find it makes no difference.

I am sad to report that after that remarkable day 2 days ago, my eyes are back to being as dry as ever. I seriously hope that that day is a sign of things to come - as you say, it has only been 12 days so far. I will be crushed if it doesn't improve significantly from here.

As regards your corneal sensitivity, you can definitely get rid of that. If your eyes aren't severely dry anymore then it should go away on its own as your cornea will have a chance to heal. It can go away even with severe dry eye provided you use eye drops constantly to keep them protected. You could even use a thick ointment like lacrilube to physically protect the cornea while it heals. You will also find, as I do, that a thick ointment brings more relief than liquid drops because it mimics the function of meibum and prevents our tears from evaporating. I get epiphora when I use ointment because it mixes with my tears and prevents them from disappearing immediately like they do now.

[savino]

okay goodluck

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