Accutane ruined my eyes

[ThanasisVC]

Hello

My name is Thanasis and I'm from Greece. I am 14 years old.

I have severe dry eyes due to Accutane and it's ruining my life!
I got Accutane because I had sever ozocystic acne (the worst case of the worst case of acne lol) and I got permanent double dry eyes (not producing enough tears AND oils).

I was on Accutane for like 9 months (40mg) and my parents and dermatologist wouldn't let me stop my medication because my acne was the worst and dry eyes became worse all the way.

It's been six months since I stopped. And I already hate my life. My parents think it's a minor problem and don't pay attention to me and my eye doctor says there is no solution to my problems and I can only use artificial tears.

I remember when I was even younger my eyes were great. Now people in my school think I'm smoking or don't sleep enough due to my red eyes. And the worst part is that I see people getting dry eyes syndrome the least at 18. I haven't seen anybody in my age.

I just wanted to share my opinion and I know that you have the same problems. I found this forum and I feel sooo relieved that I can talk to people who are actually in the same position like me.

Wish you the best!!!!
Greetings from Salonika, Greece.

[Rebecca Petris]

Welcome, Thanasis. I lived in Salonika for 8 years... sthn ano poli, plateia terpsitheas. Mou leipei h ellada! Exo tria-tessara xronia tora pou den exo paei.

I am really sorry to hear what happened to you.

My parents think it's a minor problem and don't pay attention to me

They don't understand... and if it's any comfort, this is true of the families of many members here.

and my eye doctor says there is no solution to my problems and I can only use artificial tears.

That's simply not true. But many doctors are ignorant about dry eye pain relief and about dry eye treatments. It's great that you are starting to do your own research because there's a lot out there to helps us with this condition. We've had several people come through here over the years with accutane related dry eye. Healing can take a long time but it does happen. There's also a big accutane bulletin board... can't remember just offhand but the last time I looked (coupla years ago) they had a fair amount of discussion about dry eye.

And the worst part is that I see people getting dry eyes syndrome the least at 18. I haven't seen anybody in my age.

It's not too common but it does happen, for a number of reasons.

[FWM]

14 yearsss old!... i can't believe that... it makes me feel sad!..
i am young.. 24... but at your age i cant believe you have to deal with this disease, it's really hard..
hope you can solve it.

[ThanasisVC]

@Rebecca
Hello!! Thank you for replying! I'm so glad you've lived in Salonika kai milas kai ellinika akomi!!

Thank you for your understanding! I am actually going to visit more eye doctors than this and find if I can 'fight' the dryness with other ways like plugs, oil supplements/ointments, other eye drops etc.

I was way too pessimistic some months ago about my condition but after reading some posts here I get encouraged to try and don't give up.

@FWM
Thank you for replying as well. I know I'm too young and got DES very early but thank you for all the good words, too.

[littlemermaid]

Paediatric dry eye

Hi Thanasis! My daughter has had severe dry eye since she was 11 years old and now she is 13 so you are not alone and we send you our warmest greetings from London!

It is important that the ophthalmologists examine and monitor your eye surface very closely, and your intraocular pressure, and any inflammation, because a paediatric dry eye surface is more vulnerable. I am worried that you are not mentioning sensations in your eyes like pain or burning because in our experience this suggests a paediatric eye response to surface problems and inflammation rather the adult responses you will read about here.

Important: can you tell us right now if your cornea has veins into the iris? is your eye pressure checked regularly? do you ever have difficulty seeing in bright light or looking up?

We saw many confused ophthalmologists before getting diagnosis and help in a specialist eye hospital from a paediatric ophthalmologist who understands inflammation and corneal disease (rare).

Please show this to your parents. I found an optician with an ophthalmoscope attached to a computer screen so I could see the vascularised surface myself and realised the ophthalmologists had been hiding their ignorance. If there is vascularisation into the cornea, punctate keratopathy or inflammation, this needs to be controlled right now. You also need frequent eye tests to check your vision.

Glad to PM. This is because littlemermaid's case is tricky and we love our docs and don't want to hurt them in public.

Best wishes to you - I sincerely hope you find a wonderful eye specialist soon.

[calcan]

Hi Thanasis,
I first started having eye problems when I was about 12. My parents didn't try to help much either, and when I finally took myself to several doctors in adulthood, the docs just gave me eye drops (vaso-constrictors) that made the condition worse in the long run. I made the mistake of using those drops for years! Please don't resort to those kinds of drops.

There's lots of good advice on here from lots of dry-eye sufferers. I'm sure you'll find some methods of treatment that will help your eyes feel and look better. There really isn't a "cure" for dry, irritated eyes. You just have to find ways to control it and "tame" it.

Hello

My name is Thanasis and I'm from Greece. I am 14 years old.

I have severe dry eyes due to Accutane and it's ruining my life!
I got Accutane because I had sever ozocystic acne (the worst case of the worst case of acne lol) and I got permanent double dry eyes (not producing enough tears AND oils).

I was on Accutane for like 9 months (40mg) and my parents and dermatologist wouldn't let me stop my medication because my acne was the worst and dry eyes became worse all the way.

It's been six months since I stopped. And I already hate my life. My parents think it's a minor problem and don't pay attention to me and my eye doctor says there is no solution to my problems and I can only use artificial tears.

I remember when I was even younger my eyes were great. Now people in my school think I'm smoking or don't sleep enough due to my red eyes. And the worst part is that I see people getting dry eyes syndrome the least at 18. I haven't seen anybody in my age.

I just wanted to share my opinion and I know that you have the same problems. I found this forum and I feel sooo relieved that I can talk to people who are actually in the same position like me.

Wish you the best!!!!
Greetings from Salonika, Greece.

[littlemermaid]

Paediatric dry eye + acne

Thanasis: Do you want to tell us what drops you are on, especially whether you are using a steroid? Also, Littlemermaid has ongoing red inflamed acne rosacea. We have seen so many docs! If you or your parents want to compare treatment we would be very happy.

I just need to know that your eye docs are taking this seriously. If you need to persuade anyone to rethink what they are doing with your eyes, the latest research is on PubMed: search for 'child blepharitis' (also 'blepharokeratoconjunctivitis') or 'child ocular rosacea'. I don't mean you have these, just that these are useful keywords to find relevant research. You know you are aqueous and oil deficient and hopefully your eyes are being monitored, so do not be worried by some of the untreated cases with various causes. You can use this research to shock the adults into action if you need to.

Current doc thinking on Accutane is that the lacrimal and meibomian gland dysfunction tend to resolve. Hmm. Obviously patients posting on forums are mostly unresolved cases and people who clear up don't post.

The European Paediatric Ophthalmological Society meeting in Germany in October 2010 shows some very up to date paediatric ophthalmologists in the university hospitals in Thessalonika who would be good.

From your research do you think they are missing any treatments? When you see a doc, prepare until you feel good about it and take a list of questions. If they don't know the answers, a good doc will read up for you. The key is to make good relationships with interested doctors, ideally with the dermatologist working with the ophthalmologist, and this is the advantage of attending university hospital clinics. Wishing you very good progress.

[Anthony16]

Hello

My name is Thanasis and I'm from Greece. I am 14 years old.

I have severe dry eyes due to Accutane and it's ruining my life!
I got Accutane because I had sever ozocystic acne (the worst case of the worst case of acne lol) and I got permanent double dry eyes (not producing enough tears AND oils).

I was on Accutane for like 9 months (40mg) and my parents and dermatologist wouldn't let me stop my medication because my acne was the worst and dry eyes became worse all the way.

It's been six months since I stopped. And I already hate my life. My parents think it's a minor problem and don't pay attention to me and my eye doctor says there is no solution to my problems and I can only use artificial tears.

I remember when I was even younger my eyes were great. Now people in my school think I'm smoking or don't sleep enough due to my red eyes. And the worst part is that I see people getting dry eyes syndrome the least at 18. I haven't seen anybody in my age.

I just wanted to share my opinion and I know that you have the same problems. I found this forum and I feel sooo relieved that I can talk to people who are actually in the same position like me.

Wish you the best!!!!
Greetings from Salonika, Greece.

I have been dealing with accutane dry eye and am nearly 19.Been off accuitane over 10 months now.I saw dr latkany recently.hE SAYS that if ur oil glands are not completely closed over cos of accutane(as in they do produce oil when pressure is applied),there is hope.Mine arent completely closed over so i hope treatment works.If u have any questions u can PM me.also,i know some other post accutane sufferers who got better.

[ThanasisVC]

FIRSTLY, I want to say how grateful I am for your answers and how excited I feel. I almost cried when I read them. Because nobody ever cared about my condition and they always tell me I exaggerate about the pain.

@littlemermaid
When I first went to my eye doctor and I was on the medication he said it will go away so that I could wear contacts with the help of artificial tears. Gradually, I stopped wearing them as the time passed and now I only wear daily disposables 3 times a week.
The 5th time I went and told him my problem he didn't repeate what he said ('It will go away') but he said I don't produce enough tears AND oils. He examined my eyes, put some yellow eyedrops in them and also (I don't really remember) he had stuck some things which I suppose they were Schrimmer's test (?).
=>He told me I could do nothing about it and I could only use artificial tears. He was so ignorant that I wanted to punch him. I didn't though LOL. My mother asked him if that would go away and then he said we can't tell. It was the worst time of my life...
I only use artificial tears since then, I wanted to get plugs and another treatment with oiments or supplements but as I said before my whole family say I exaggerate and I told them I was serious and I WANT to visit more eye doctors who want be that ignorant and will examine more carefully my eyes. My parents said that we will probably go in one or two weeks.

That's all, I don't use anything else to treat my eyes apart from artificial tears or wet cloths.
Also, he didn't tell me if I have veins in my cornea (neovascularization or something) and also didn't inform me about the pressure of my eyes. I guess they were okay? It's difficult to see with bright lights as I am very sensitive to them sometimes.
I used vasoconstrictors once and led my eyes to viral conjunctivitis TWO times. Never used them again.

I also get the gritty, burning and irritated feelings which won't go away if I use tears. That's why I'm looking for another treatments apart from this. And I don't care if it's not going to cure. I just need to see them get better. I love my eyes and don't wanna lose them.

SO, I'm very very sorry if I tired you (which I did obviously ) but I feel way better that I told you my problems and I see there are people similar to my age that are in the same condition like me.

Thank you very much,
Best regards.

[RonnieD]

Thanasis - hey dude - I have been suffering with the same eye symptoms as you since I took Accutane when I was 17. I am now 31 and have seen the best dry eye ophthalmologists in Los Angeles, San Francisco, New York City, Vancouver, Calgary, Raleigh and even in Scottsdale at the Mayo Clinic which is a world renowned facility specializing in difficult to cure ailments. I have spent a small fortune travelling and seeing all of these specialists, and following their feedback, but have received no relief.

Six weeks ago I found research showing a positive correlation between levels of androgen and mebomian gland functioning, which might help reduce dry eye irritation. I went to a doctor and was receiving androgen injections once every 14 days, before switching to andro gel, applied daily. The androgen has resulted in marginal improved tear film. For a period of three weeks I was also using bean bag compresses, shower compresses, and lid margin squeezing 3x daily, followed by a shampoo cleaning of the lid margins. The eye lid margin inflammation (blepharitis) completely disappeared after three weeks but the eye irritation remained.

Everything was going well until a friend and I went for lunch at Edo Japan. I am careful with what I eat and am sensitive to foods that make my eyes worse. My eyes were feeling so good that I elected to get the teriyaki sauce on my stirfry, even though sugars normally make my eyes more painful within minutes of consumption. Well, I ate my meal and by the time I finished my eyes were painful, the eyelid margin inflammation completely returned, my nasal passage was congested and my stomach hurt.

I told my friend how I felt just minutes after eating the food and she told me that nasal passage congestion is often related to digestive issues. Like I have suspected for years, I became more confident that my eye irritation is the function of some internal problem, even though extensive blood work shows I am in great health and have no diseases.

I went home and spent time on the internet researching various thoughts. I learned about an issues called candida, which is internal yeast overgrowth and can result from overuse of antibiotics. When I was young, it seemed like every time I caught a cold I was put on an antibiotic and Accutane is essentially an intense antibiotic.

There are triggers that make candida symptoms worse, including beer and sugar. Reading this was like a light going off for me. Years ago I switched from beer to vodka because beer consumption irritates my eyes while vodka consumption does not. I am also keenly aware that sugar makes my eyes feel worse. I am a skinny dude but I always feel bloated, even though I eat really well and avoid dairy.

I have seen naturopaths and Chinese herbalists in the past - none of whom mentioned candida - and tried more than a handful of cleanses/detoxes, none of which provided more than slight improvement for the 14 days - 21 days I was on them for. I saw a new naturopath last week who came highly recommended and is familiar with candida. He has started me on a program of taking supplements (including bioflavonoids, probiotics, acidophilus, etc.) while restricting my diet to cooked meats, vegetables, fruits and non-glutein grains. The feedback is that candida can be cured, but there is an extensive time commitment required, that can last over a year.

The naturopath I saw is good because he recognizes I need to live my life still and said I can deviate a bit from the program. He said that for the first few weeks I should avoid alcohol and caffeine but afterwards I can return to having my staple double espresso in the morning and have potato vodka at night several days of the week. The realistic intent is to eliminate more bad elements to the body than are introduced.

I'm nine days into the program and while my eyes do not feel better yet, I am seeing other improvements. Normally I am exhausted throughout the day and feel lethargic even thought I exercise and eat well. Since starting the program my energy level has noticeably increased and I feel less bloated from meals.

I have not been told that I have celiac disease, however, when I went to the local health food store last week I was taking with a dude who works there and he told me that a year ago he was labelled as being celiac. He has spent the past year avoiding gluten and eating well. He said after a period of about 12 months he feels much better and he actually now can consume some gluten without adverse effects. This story was encouraging to me in that it appears that for my candida - if that is what I have - there is the ability to gradually eliminate the yeast overgrowth and realize diminishing eye irritation.

I have been suffering with dry eyes since catching a cold in April 1997 - 8 months after completing my first and only cycle of Accutane. I would have given up years ago in finding a solution had I not had complete eye relief for nine days in Spring 2001. An ophthalmologist prescribed me 50mg of Minocycline to take 2x daily for six weeks, telling me I might see some improvement after five weeks. Well, 20 minutes after taking the first pill my eye pain completely disappeared and my nasal passage cleared. I felt amazing for nine days until, suddenly, all the adverse effects returned. My new naturopath said that the Minocycline would have temporarily restrained the yeast overgrowth before being overwhelmed and that is why I had immediate relief, followed by a complete return of all symptoms.

I recognize this candida explanation may be a stretch but I have tried every other option under the sun, all to no lasting avail. I am willing to go months on this plan and see how I feel. What is strange with my irritation is that at the same time my eyes became irritated, I became lactose intolerant and suddenly had trouble eating certain foods, such as hamburgers, raisins, etc.

The only time I can get relief now is if I am in an environment that is both hot and humid. I have tried so many remedies and received such little relief. I am of the belief now that either Accutane made a permanent change that cannot be reversed or I can carefully monitor what I eat, take supplements, and hope that I can eliminate candida and lose the eye irritation.

I don't use this site much but I will stick with the candida treatment program for months and report back if I can feel any improvement. I'd suggest checking back at the end of summer/early fall to see if I've posted. If I haven't then unfortunately the program hasn't helped but if there is a post then hopefully it will contain good news.

I know what it's like to have this constant discomfort and have everyone else discount the level of irritability but keep looking for a solution, especially from creative angles.

[Rebecca Petris]

RonnieD, thanks for posting in so much detail. I will be keen to hear how this works out for you. We have had a lot of discussion over the years here about candida, off and on, yet it's one of the things I keep forgetting to consider.

[spmcc]

RE: candida

I'm curious... if it's candida/yeast, why wouldn't diflucan work?

[tearless2]

enterolabs gluten sensitivity

Thank you for your detailed e-mail. I am thinking about going to a naturopath again. I have just started a gluten free diet last week as I question whether I may have an autoimmune disease despite my negative blood tests and I have heard a gluten free diet may be helpful.

My blood tests are negative for celiac but I have heard that that is not always conclusive and may not tell a gluten sensitivity. I am thinking about getting tested for gluten sensitivity from a company called enterolabs. Their website says you can be on a gluten free diet and take their test. Unfortunately, there is some debate as to the validity of enterolab's tests. Does anyone have any experience with this company and their testing?

RonnieD, please keep us posted on your progress, I hope you have improvement with your program.

[fundryeyes]

I took Accutane 25 years ago. It essentially destroys your oil glands. My opt. said " it wouldn't take 25 years for Accutane to do this to you. How does she know ? They don't know a whole lot about causes unfortunately. When I took Accutane the derm. told me it would knock out 90% of the oil production. So, we are left with 10% which will diminish over the years. Bingo ! i'm a 45 yr old male with a disease of post menepausal women. The opt. told me the oil in my eye is milky and inconsistent. I have no blepharitis or any external evidence of MGD. Just milky oil and the glands are not plugged.
Unfortunately there is no way of proving Accutane is the cause. I would sue their pants off if I could prove this. I don't think they have pants anyways as the Crohn's and colitis people have removed those by sueing them. Maybe I could get their shirt ;-)

[RonnieD]

I'm in the same situation as you man, except I'm 31 and have been suffering from the eye pain for 14 years. I'd be inclined to believe the irritation is irreversible except for the following occurrences:

1. Nine years ago an ophthalmologist prescribed me a 6 week cycle of Minocycline to take a 50 mg pill twice daily and told me I might see some improvement after 5 weeks. I was convinced this plan was useless but I agreed to try it. I took the first pill with a rotten attitude, and 20 minutes later my eye pain completely disappeared and my nasal passage cleared. I felt amazing for 9 days! Post Accutane I normally sleep for 9-10 hours and always feel tired but during these 9 days I was sleeping for 6-7 hours a night and waking up refreshed! However, on day 10, all positive progress completely evaporated and did not return, despite finishing the Minocycline cycle and taking subsequent cycles.

2. Twice in the past four years I've been lucky enough to contract strep throat. Both times, I couldn't eat. My throat felt horrible but my eye pain disappeared, until I started eating again.

I would be inclined to capitulate and say this post Accutane eye pain is permanent save for the two experiences referenced above. I'm 3 weeks into an 8 week program of controlling what I eat and taking supplements to remove candida (yeast overgrowth) in hopes that this is the source of my eye pain, caused from antibiotics (including Accutane) killing good bacteria and leaving too much bad bacteria to run wild. During these 8 weeks, I was told to expect my eyes to feel worse prior to the next phase of the program. My eyes aren't really feeling much different but my body is feeling better. This is totally the last avenue for me to pursue so I am pouring money and time into this program because I have done the same for every other program without sustainable results. I'm really really hoping this is the cure. I'm sticking with this program and will post back at the end of summer/early fall if I have positive results.