I am a British 21 year old graduate. After four long years, I am at my wits end.

[teddy1324]

My story

Hello, everyone. As this is my first post on these forums, I suppose I should share what has happened to me. Though I don't expect everyone to read my story in full, it might nonetheless be cathartic to detail what I am suffering from, the remedies I have tried, and how it has impacted my life.

I am 21 years old, and am a recent graduate from the University of Exeter. For most of my teenage years I suffered from what my dermatologist described as moderate but persistent acne. I was prescribed Roaccutane (Isotretinoin) at the age of 17; totally unnecessarily, I might add, as it is usually only prescribed to treat those who suffer from the most severe form of cystic acne. I experienced the usual side effects - dry skin, lips, but most severely of all, dry eyes. The intensity of the pain was such that I couldn't leave the house without my eyes streaming, while even walking around my house would cause an acute stinging sensation. I was so frightened by what was happening to me that I stopped taking the drug, but my objections were waived by my dermatologist, who told me that the dryness was always transient - and that it would be worth enduring the short term pain for a permanently clearer complexion.

I continued taking the drug, and noticed an increase in the severity of the condition as the months went by. After about 5 months, I decided I couldn't take any more of the pain, and that the further 6 months on the drug suggested by my dermatologist were out of the question - even when, I was at the time, under the illusion that the side effects were temporary. It has now been four years since I started Roaccutane and it is as though I had never come off it. Nothing has changed. Though infinitely less painful than my eyes, I still have a chronically dry mouth, and lips which crack and bleed.

Curiously, I am certain after many many years of seeking answers that the dryness is caused by aqueous tear deficiency. I score 2 on Schirmers tests in both eyes, and am still sub normal even with all four puncta plugged. My tear breakup time (TBUT) is borderline normal at around 10-14 seconds.


My symptoms.

This has wreaked havoc on my life in ways that I can't even begin to adequately articulate. Most nights I go to sleep I dread waking to my daily nightmare. My lids are glued to my eyeballs, no matter which night time ointment or gel that I have used. I can't ever leave the house without lathering my eyes with lacrilube to protect my corneas; my eyes stream and sting to the point that I have to seek shelter inside otherwise. One morning, during my second year finals at Exeter, I gave myself an erosion so severe that I had to call an ambulance, and was effectively blinded for 2 weeks; I couldn't move my other eye due to the pain it caused the one with the erosion, and so I had to keep both eyes permanently shut. The consultant I saw said it was one of the biggest she had ever seen, and I was lucky my cornea managed to repair itself from such severe damage.

I feel very doubtful that I can do any serious jobs. Exeter gave me enormous extensions on deadlines and mitigation that I can't expect in the workplace. At a time when I should be feeling invincible - naively over confident about the future - I feel as though there is a dark shadow hanging over my life. I feel as though I have ruined the one crack I have - we all have - at this life, for vanity's sake. At university I felt jealous of everyone else, able to live their lives in a normal, young, carefree way, and I became withdrawn and depressed; I didn't go out much, I felt, or rather more accurately, feel, hopeless. I will not elaborate on this. I am sure everyone here knows what it is like; I am in good company. Despite myself, I find myself wishing I knew somebody else suffering from the same condition so I can have some kind of solidarity. There is not a second of any day that my symptoms feel better, or my eyes feel even remotely comfortable. I am currently unemployed, and though I want to apply for work and/or a masters at Oxford, I feel no motivation right now. Nothing will be enjoyable, even if it turns out to be doable, living as I am and have been for the last four years.



What I have tried.

My mum, who took me to the dermatologist in the first place, feels incredibly guilty about all this. She has to date spent over £10,000 in consultations and on the drops/lacrilube I need to keep living the semblance of a normal life (notwithstanding the amusing impression to the outside world that I am constantly weeping).

I have tried night time masks to help the night time dryness, but by morning they had always fallen off, no matter how I tried to position by body in sleep, and at any rate, the straps began to leave a painful rash behind my ears. I spend most of my time indoors due to my condition, wearing moisture chamber goggles which do help, but they seriously impair my vision, and I can't leave the house in them.

To date, I have been on cyclosporine, had all four puncta plugged, tried every single commercially available eye drop, had IPL (intense pulsed light) treatment to improve my marginal TBUT, and seen countless ophthalmologists, at Moorfields and all over the UK. Some have been nicer than others, many have been alarmingly ill-educated on the complexities of 'dry eye', but all have concluded what I suspected from the start: there is nothing more they can do to help, despite their sympathy. It is this realisation that makes it difficult to find the will to go on living like this. The last specialist I saw was a rheumatologist, who told me, with a sort of vague curiosity, that I had all the symptoms of Sjögren's syndrome, even though my bloods are clear. That was about the extent to which she was able to offer insight or help.

Sorry for the length of my post.

[alb1967]

Have you ever been checked for Sjogren's Syndrome? The 2 main symptoms are severe dry eyes and severe dry mouth. With you having both it may be worth looking into. Not much you can do for it but treat the symptoms

[alb1967]

Sorry I see you have been tested. FYI 40 % will have a negative blood test even if you have it.

[littlemermaid]

Teddy1324, my daughter (MedSci) trailed round senior derm for p&p infected rosacea since 12y who openly said that they were 'not interested in effects on the eyes' of treatment. That is harm. Have you been able to access any meibography, confocal microscope, or ultrasound type assessment of meibomian and other glands around the eyes to find out where you are with healing? It's finding those rare people who make you feel better. I felt better reporting on MHRA Yellow Card http://www.nhs.uk/conditions/medicin...ages/mhra.aspx. Was advice to continue Accutane with severe (or any) eye pain given in NHS or private? Citizens Advice Bureau advise on how to report medical harm in a useful way. We double-checked we had all Consultant letters and test results (GP), requested Medical Record from every past provider (eg 'I see so many different Trusts and they never have the notes'), and keep a Summary with 2-lines for each consultation. We felt more in control, as if it was a project. Coping can be such a delicate balance and maybe your mental wellbeing techniqes are the priority. Dearly hope you find good friends to share with. If you wanted to continue low-key learning while you're healing, 'Introduction to Counselling' type courses have been good and might lead to short-term voluntary groups that benefit. GP, counsellors and this work/life balance are good in Oxford if you did want there.

[teddy1324]

Thanks, littlemermaid. I have been able to access a meibography. Though I didn't score as highly as would be expected of somebody my age, I hadn't any gland atrophy or permanent damage. My tear break-up time has increased to near normal times. The problem as far as I can see is severe aqueous deficiency, even with four plugs. The advice to continue despite the dryness was given privately by a well respected dermatologist on Harley street. As regards Alb - while symptomatically I have sjogrens, I am absolutely certain that all these symptoms were caused by roaccutane. They began a few weeks into the course (are all well documented temporary side effects), went away when I stopped temporarily after a few weeks, came back when I resumed and stayed forever after a further 5 months taking it.

[littlemermaid]

Teddy, do you have occupations to combat post-degree blues? ('Harley Street is just an address' should be our meme, altho we are familiar with that road too)

[unicorn]

Hi Teddy I am so sorry to read the terrible things you have been going through. It may be an obvious question but have any of the ophths you've seen discussed autologous serum or scleral contacts with you?

Also, has a lip biopsy or ultrasound been suggested for you to further investigate the possibility of Sjogrens, since you have a dry mouth as well? As I'm sure you know fewer than 60% of people with Sjogrens have positive blood work.

[savino]

..........

[OompaLoompa]

Hi,
I can understand everything you wrote. I'm 20 years old and suffer from dry eye too.

However, I have to point at this: http://archderm.jamanetwork.com/arti...icleid=1148708
"while Schirmer test scores did not change significantly"

Maybe you should really check on the possibility of Sjogrens again?
I took Isotretinoin for a month myself while I already had dry eye. It indeed worsened my symptoms, it got, however, back to normal after only one month. Point is, I am aware that Isotretinoin makes the eyes feel much worse.
However, in your case something seems strange to me.
Just looking at the test results for schirmer and TBUT you gave me I'm asthonished that your eyes feel THAT bad.
I often scored between 2-0 on schirmer tests and had TBUT mostly under 10 seconds. I mean, I guess it would be kind of perverted and stupid to try and compare such existential health issues, however, even though I can relate to everything you wrote and even though I often felt incredibly terrible (I write a BIT in the past tense because there definitly was a point in my life where my eyes were extremely worse than tey are now), however, after a while of treatment I definitly never woke up anymore with extremely sticky eyes like you describe it.
I am not sure, how long does isotretinoin remain in the body? I actually read somewhere that systemical isotretinoin could get into the tears one produces causing additional inflammation.

Also you should try scleral lenses. (Haven't tried them myself by now but I plan to. The concept sounds so simple and logical.)

Based on my experience and on what you describe about sticky eyes I'd also try BlephaSteam from TheaPharma. Use it once a day before going to bed, massage your lids/glands and then clean your eye lids.

And last but not elast: Don't give up completely on finding other possible causes for your dry eye that may have been triggered by isotretinoin.
Besides all the standard stuff I already checked my hormones, wether or not I have celiac disease and currently I'm looking into yeast a as a possible cause.
So, maybe I won't find a cause, maybe you won't find a cause, probably most won't find a cause and will have to treat the symptoms.
However, I'm sure somewhere there will be a person who actually succeeds. So, keep researching for root causes other than jsut isotretinoin being the problem. In my opinion it is worth it.


Edit:

And the point is, in my opinion investing time into thinking about root causes is much better than trying one artificial tear product after the other. If like 20 different products from 10 different brands did not work for you it is very unlikely that the next one you try will make a difference. (except of course it really is an amazing innovation but then you'd read about it everywhere anyway.)

[teddy1324]

I am sure that there are many clinical trials that indicate that schirmers scores are unaffected by roaccutane. In my case, and evidently it is a rare one, they have been - severely.

This is how I am sure. Before taking roaccutane, I had never even thought of my eyes, or even considered the possibility that they could ever be 'dry'. I had never used a single eye drop. Within 2 weeks of taking isotretinoin, my eyes, along with my skin and lips, became very, very dry. The intensity of my eye dryness caused me to temporarily stop taking it after a month, as I outlined in my original post. A few weeks into this temporary break, my eyes returned to normal and were no longer dry. This, combined with my dermatologists assurance that the dryness was transient, persuaded me to continue taking the drug for a further 5 months. A few weeks after resuming, the dryness came straight back again. I am not wasting my time looking for other answers because it is completely clear what the cause is. I was surprised to find that the dysfunction appeared to be lacrimal too; my schirmers attest to that, as does the fact I get no overflow whatever with four plugs in.

I tried sceral lenses but I have incredibly deep set eyes and couldn't get them to fit, even after visiting a specialist. In truth, what has gone wrong my eyes is probably more complex than just aqueous tear deficiency, but it appears knowledge of dry eye is still in its infancy. All I can say with certainty is that it is all caused by isotretinoin.

[teddy1324]

Hi Teddy I am so sorry to read the terrible things you have been going through. It may be an obvious question but have any of the ophths you've seen discussed autologous serum or scleral contacts with you?

Also, has a lip biopsy or ultrasound been suggested for you to further investigate the possibility of Sjogrens, since you have a dry mouth as well? As I'm sure you know fewer than 60% of people with Sjogrens have positive blood work.

Thank you for your kind words. The dry mouth is something I notice only incidentally, as this also started, along with the dry lips, a few weeks after I started roaccutane. It went away after I stopped initially (having only taken around four weeks worth) and came back very soon after I resumed. Nonetheless I am seeing a second rheumatologist soon at the great western hospital in Swindon, where I am seeing a lady who apparently deals with the 'weird' cases. I am totally convinced I do not have Sjögren's. All the symptoms coincided with me taking roaccutane (and all are registered side effects), and I never had any health problems (even slight ones) before I began taking it.

[OompaLoompa]

I am sure that there are many clinical trials that indicate that schirmers scores are unaffected by roaccutane. In my case, and evidently it is a rare one, they have been - severely.

This is how I am sure. Before taking roaccutane, I had never even thought of my eyes, or even considered the possibility that they could ever be 'dry'. I had never used a single eye drop. Within 2 weeks of taking isotretinoin, my eyes, along with my skin and lips, became very, very dry. The intensity of my eye dryness caused me to temporarily stop taking it after a month, as I outlined in my original post. A few weeks into this temporary break, my eyes returned to normal and were no longer dry. This, combined with my dermatologists assurance that the dryness was transient, persuaded me to continue taking the drug for a further 5 months. A few weeks after resuming, the dryness came straight back again. I am not wasting my time looking for other answers because it is completely clear what the cause is. I was surprised to find that the dysfunction appeared to be lacrimal too; my schirmers attest to that, as does the fact I get no overflow whatever with four plugs in.

All I can say with certainty is that it is all caused by isotretinoin.

I'm not denying that from what you describe it seems very likely that isotretinoin started your problems.
However, that does not mean that your assumed causal chain is correct.

For example:
Isotretinoin is know to influence the seborrhoic glands, including the meibomian glands. It is also known to potentially induce inflammation, blepharitis.
Maybe isotretinoin did not cause your lacriminal glands to "dry up", to stop producing enough tears but rather it started inflammatory processes around your eyes, in your meibomian glands etc. which in consequence affect your lacriminal glands so that they stopped producing sufficient amounts of tears?

This is pure speculation and just something I thought of in a few seconds. The point is, that this assumption would be somethign very different than just assuming that isotretinoin caused your lacriminal glands to produce less tears.

[teddy1324]

I'm not denying that from what you describe it seems very likely that isotretinoin started your problems.
However, that does not mean that your assumed causal chain is correct.

For example:
Isotretinoin is know to influence the seborrhoic glands, including the meibomian glands. It is also known to potentially induce inflammation, blepharitis.
Maybe isotretinoin did not cause your lacriminal glands to "dry up", to stop producing enough tears but rather it started inflammatory processes around your eyes, in your meibomian glands etc. which in consequence affect your lacriminal glands so that they stopped producing sufficient amounts of tears?

This is pure speculation and just something I thought of in a few seconds. The point is, that this assumption would be somethign very different than just assuming that isotretinoin caused your lacriminal glands to produce less tears.

Actually, I think you're exactly right. My break up time was very low too(2-3 seconds); it's only borderline normal now after I had them expressed and had IPL treatment, along with omega 3 supplements. Now it is my tear production that is causing me this misery. Another sign I don't have Sjögren's is that my eyes are more than capable of producing reflex tears. They flood my eyes whenever I leave the house.

[OompaLoompa]

Yeah, maybe that theory is right. But it also could be something else, you know what I mean?

Also, personally I'm very doubtful about the whole idea of the ophthalmology that it would be possible to just divide lacriminal gland production and meibomian gland production.
I mean, isn't it a coincidence that seemingly the overwhelming majority of people with dry eye syndrom have allegdly dysfunctional lacriminal glands AND meibomian glands?
I don't have any medical education so this is much speculation but with common sense it sounds logical: What if the whole "system of the eye" is just "intelligent", adaptive (or whatever) enough to for example realize when there is not enough meibomian secretion to "bind" a normal tear production? Maybe the fact that many people have seemingly problems with lacriminal and meibomian glands is just due to the fact that our body reacts if even one of the glandtypes does not produce normally?
So, if that theory was right your low tear production maybe would not even needed to be caused by inflammation but simply by the fact that your meibomian glands don't produce normally causing your lacriminal glands to adapt.

I have the feeling that even experts could not answer this for sure. There is very much uncertainty in the sector of dry eye. In my opinion all the more reason to keep investigating for oneself. (best example is cyclosporin: afaik it is still more or less a mystery why exactly it helps agaisnt dry eye. same with doxycyclin and azithromicyn i think)