dry eye and accutane

[macio1981]

Hi all. Well this is my first post to the site. I have a huge amount of experience and have tried a great variety of treatments after suffering for 10 years with this terrible condition.

It started after taking (Ro)Accutane for teenage acne which is without doubt the biggest mistake I have made in my life. I am 31 years of age. My eyes became dry about 3-4 months after stopping the course of pills. My skin, lips, nose, hair are all bone dry as a result of taking this drug and I advise you NOT to take it.

One day out of the blue, my eyes suddenly became extremely sore and red and I could not even read a book or watch TV, go outside, work on a computer etc without awful discomfort and burning, stinging eyes. I went to the doctor and he diagnosed me with perennial allergies etc and gave me an antihistamine which did nothing. Then I saw an ophthalmologist who prescribed me Lacrilube which was very irritating and uncomfortable but he did little else to help me. After 2 years or so, I couldnt bear it any more and I found a dry eye specialist in Hampshire UK who told me that I had MGD and reduced tear secretion caused by Roaccutane. He prescribed Theratears drops and Theratears Nutrition and warm compresses daily and lid care treatment. My condition improved a little and most of this was down to the Theratears Nutrition which is fantastic...if I stop taking it my eyes become 50% worse within days. If you have dry eyes, this oral nutritional supplement is without doubt the best on the market and is also very good for general dryness and also arthritis I gather (ophthalmologist advised me).

However my condition didnt improve dramatically so later I had lower punctal plugs put in which again improved my condition a little but not significantly. However, I found that with artificial tears, sunglasses, oral nutrition, plugs and generally keeping away from air con and all the usual aggravating factors, I could just about get by. This was not ideal but I am busy and couldnt keep going all over the country all the time in search of the illusive cure.

However after 7-8 years I simply got sick of living with this awful condition and decided that enough was enough and that I was going to aggressively search for relief. SO..... firstly I found a new ophthalmologist based in London (after seeing ANOTHER ophth. who advised me to get some sides for my glasses?!?!?!?) called Mr David O'Brart. He is a very experienced and qualified surgeon and he performed Meibomian Gland Probing on my glands to try and free them up and get the oil moving better. Again...this did not help noticeably. He also prescribed Azithromycin orally (have tried Doxycycline but no good and terrible in the summer) tea tree oil face wash and prednisolone eye drops but again I still could not get proper relief.

Finally, he suggested plugging the upper puncta which we did about 4 weeks ago and this has made a difference. Now all 4 puncta are plugged but my eyes are a bit too watery! I am not using drops any more and my eyes are much less red and inflamed but my tears are running onto my cheeks.

SO..............I am having Flow Controllers fitted in the next few days and will report back as to how effective they are. These are plugs which have a hole in to allow for some drainage so hopefully my eyes wont be watering all the time.

My general routine was (before upper plugs)

Theratears nutrition 3 daily
Theratears preservative free drops (when req'd.....usually a lot...3-5 vials daily)
Warm compress in the morning followed by cold water face wash
Lower punctal plugs

The biggest, most effective treatment was having all 4 puncta plugged and now fingers crossed the flow control plugs will help balance my eyes better.

Feel free to ask anything / contact me etc, I have done my homework on the subject and will help in any way I can.

Hope you find some relief

Richard

[Jenn1]

Hi Rich,

I was also on accutane and know how you feel and feel cheated by the derm not informing me anough of what could possibly happen and by the drugs companies. How long were you on accutane and how long have you been off the drug and at what dose and was it the generic form?

[NeedMyEyes]

punctal plugs

Just wanted to say that I had 2 lower plugs inserted (one in each eye) and I had epiphora (tears running down my cheeks) at first. Then after a few weeks, they stopped.

Now, my eyes are as dry as they were before (drier, maybe?). And I think if I get the uppers plugged, then the same thing will happen.

[Jenn1]

Are you also taking fish oils and flax as well as using drops to keep the eyes moist and a tablet such as doxy and doing compresses? I havent any plugs in myself.

[Andrey]

We're all in the same boat, accutane is a real *****, at least to some people!

I don't dare to put any plugs in my eyes cause I'm afraid it will just get worse. I will order some things from theratears website though.

Jenn1, since our eye production is fine we shouldn't need any plugs anyways, right?

Macio1981, "Warm compress in the morning followed by cold water face wash". Do you mean just normal water in the eyes?

Hope the Flow Controllers will do a good job for you!

[Jenn1]

@Andrey - Punctal plugs can help keep the drops on the eye surface for longer i hear, but cant really comment on its effectiveness as I havent tried it myself. I also just use plain water to wash the face and eyes, followed by some blephawipes that i use to clean the lashes with and get rid of any crusts or particles. The blephasol lotion you can use a cotton bud and soak it with the lotion and wipe it across the lash line as well as clean the meibomian gland area with it by gently wiping the tip back and forth, then use the other side for the other eye. It doesnt sting, but be gentle and then add drops afterwards and throughout the day. Some shops sell cheaper lid hygeine wipes so take a look or ask stores to stock such products as the more we demand, the more they will bring such products onto the highstreet.

[Angela]

I agree 100% that Accutane is an evil drug. I took it for only 4 months and it is the biggest mistake I have ever made. However, I was warned by my dermatologist and did not listen, so I only have myself to blame for the decision. I was told by Dr. Latkany that my blepharitis/Mgd is a 8/9 out of 10. My condition has worsened since the onset of symptoms in Feb '11. I also have multiple bacterial infections in my body that antibiotics only worsen. I think Accutane just completely destroyed my immune system. I hope that anyone searching for Accutane online finds this thread and understands what a horrible decision they are considering making. Good luck all.

[macio1981]

Hey, I was on it for 4 months, cannot remember the dose however. Have been off it for 12 years (i'm 31 now) and it's been a very difficult 12 years!

[macio1981]

what is your condition? I was advised by my surgeon that when the lower puncta are plugged, the upper puncta then actually begin to drain a lot more. So it is sensible to assume that this could be happening with you. My lower puncta were plugged and it didnt really make a difference to me. Only when they were all plugged did I start getting relief (instant relief). This was after 12 years of chronic dry eye. The other possibility is that your plugs are not working effectively and not occluding your ducts. I once had temporary upper plugs put in and they made no difference, they were the ones which sit inside the actual duct and they were useless, one fell out after 24 hours!.....I advise parasol plugs in ALL puncta and if you are suffering with epiphora try flow controllers. I am having flow controllers fitted tonight! SO I will let you know if they are any good. Cheers, Richard

[macio1981]

Now I only use Theratears nutrition. No drops, no compresses. I wash with cold water on my face because I find it helps to reduce inflammation. I am trying not to drink too much booze but being English it kinda comes with the territory! And good exercise and sleep.

[macio1981]

No, just a cold face wash as I find hot water can make my eyes more inflamed. How do you know your production is ok? And if so, what are your symptoms? Cheers, Richard (ps since upper plugs put in, no compresses, no drops. having flow controllers fitted this evening so will report back!)

[macio1981]

I suffered with infections for years afterwards. Mostly colds and throat infections etc. Also developed food intolerances and suffer with very bad back and joint pain. Nightmare drug wish I had never ever taken it

[littlemermaid]

Angela, Are you getting better medical help in the Netherlands than New York?

Macio1981, Really really appreciate this info and experience, thank you so much. Andrew Matheson, Hampshire, I presume. Also, Mr David O'Brart - very good find - good consultation time + follow-up interval in private practice?

[Angela]

Hey, I was on it for 4 months, cannot remember the dose however. Have been off it for 12 years (i'm 31 now) and it's been a very difficult 12 years!

I was on it for about the same amount of time (4-5 months), first on 30 mg then 40. I am convinced that it either caused my condition or at least made my immune system weak enough to be susceptible to bacteria/ inflammation. While I was on it, I had very bad headaches which is what made my doctor discontinue my prescriptions. The only thing I can't really understand is that, while my eyes and skin ARE dry, they're also oily at the same time. I have dandruff on my scalp, eyebrows, & eyelashes (Blepharitis) and the skin on my face feels tight but is also extremely oily as is my hair and even my eyelids. I know that Accutane works on the oil glands so I think it just completely damaged them. I also haven't been able to gain weight since Accutane and have lost a significant amount regardless of whatever I eat. My hair is at least 60% thinner than before the drug, which I knew was a side effect when I took it but was naive in thinking that it wouldn't happen to me. I wish I could go back and time and tell myself what a big mistake I was about to make. I've posted on Acne.org warning people about the side effects but unfortunately I'd read posts by people JUST like me back then and chose to only consider the people with positive results. I have a question, how bad was your acne that you decided to take Accutane in the first place?

[Angela]

[QUOTE=littlemermaid;71072]Angela, Are you getting better medical help in the Netherlands than New York?

Not yet actually. When I came here I had no idea how long of a process getting insurance was going to be. I had to apply for a residence permit which cost me about $1600, in addition to the necessary paperwork I needed that I didn't have here, so I had to go back and collect everything which wasn't cheap either. Then once I applied, they told me should they choose to deny my request, I would not be refunded money..and their decision would take anywhere from 3-6 months. Luckily, I just got approved last week and can pick up my paperwork soon which is when I will be able to get insurance. I did however go to a few "house doctors" here who really weren't any help and told me I needed a specialist which I cannot get without the insurance. I've actually had a bacterial infection for 5 months that the doctor on my street told me was untreatable? She told me that since I was on Doxycycline for so many months, she does not want to give me antibiotics. It has only gotten worse. How is little mermaid doing? I haven't been on here in forever, I'll have to catch up on your posts. I hope she is doing well.