Dry eyes from Accutane/Roaccutane/Isotretinoin........Is there any hope!?

[Jaybo]

Hi guys,

So here I am.

I read this site a few times during my treatment........Dermatologist assured me that my eyes would be fine after the treatment...............they aren't. Now I feel like an idiot.

Here's a quick overview. I was prescribed Roaccutane due to the severe anxiety that my mild acne was causing. I initially saw a private dermatologist, who prescribed me a low dose, 20mg a day. I did this for a month, no issues. Acne was clearing fast. By the fifth week, it was all gone. I then saw an NHS dermatologist (which had already been arranged prior to my private meeting). He agreed that Roaccutane was the way to go and applauded the other dermatologist for putting me on it. However, he wanted me to get my course over and done with, asking that I up my dose to 40mg for a few weeks, see how I reacted, and then up to 60mg after that. I was fine at 40, eyes were a bit red, nothing crazy, so I moved up to 60mg after 6 weeks. However, around the 12th week, my eyes started to get really dry. they watered like crazy for a few days and then adjusted. I was having to put drops in all the time so I spoke to my dermatologist and he said they'd be fine after the treatment was over (a prospective 6-7 month course) and that in the meantime, I should use gels instead of drops. The gels seemed to just clog up in my eye and make my eye lids stick to my eyeballs over night, so I stopped, and started just putting drops in before sleeping. A month later, I stopped the treatment because I could no longer stand the dry eyes and was worried. Within a week, my eyes felt much better. Within three weeks, better again, I only needed the drops 2 or 3 times a day. By 5 weeks post, I was putting drops in in the morning and again at night, even then, it was just for the redness, barely any discomfort, no problems during the day and my eyes were starting to look whiter. I was pretty relieved and everything seemed to be going well.

However, towards the end of the sixth week, things took a sudden turn. I woke up with my eyes stuck to my lids again. This worried me. I put drops in (preservative free, Hyco-San ones) most of the day but they still felt pretty awful. I got some dust in them whilst doing some work and I ended up with a foreign body sensation which still comes and goes now. I panicked and came across all of these posts on this forum, most mentioning MGD after a course so I bought a lipid based eye drop to see if it would help. It's the only thing that has really given me any relief since. And even then, it's only marginal. I have short periods, maybe of a few hours, where my eyes feel okay, but primarily, they feel terrible. I saw an optician who did a bunch of tests, looked at my eye under a slit lamp, put some dye in to look for dry spots and said my eyes looked okay, this was two weeks ago, a few days after they started acting up, and things are worse now.

My symptoms are perma dry, gritty eyes that regularly stick whilst I sleep, even with drops in. Gels are worse at night. A recurring mild burning. Red and bloodshot eyes with discomfort. I don't seem to have any trouble keeping them open, and wind isn't too much of an issue. Cold dry places aren't great, but if I need to, I can keep my eyes open for 15-20 secs fairly easily. My eyes tear up when I yawn so I'm not sure that my tear ducts have been affected, but I don't know much about eyes beyond what I've read.

I've been trying warm compresses and massage, absolutely every eyedrop, hot water in the shower, all types of gels including artelac and genteal. I've really lost hope and it's only been two weeks at this severity. Like I said, I have moments where I seem to hit some sort of sweet spot, sometimes when I refrain from putting drops in for a few hours, pushing through the discomfort, however, after a few more hours, they start to grow uncomfortable again, so there doesn't seem to be any rhyme or reason to it. I thought maybe the eyedrops were irritating, so I stopped, and after a few hours, the discomfort just felt like a constant burning, like I had chlorine in my eyes, which was bearable, but realistically, still pretty awful.

When I pull my lid down, the glands (if that's what I'm looking at/the parallel lines that run from the lid margin towards the eye) look quite red all the way along, but only individually, no redness around them and they may have always looked like that, I've never really needed to look before.

I have a follow up with my dermatologist next week, as I left a message and he wanted to have a look at my eyes. I was happy to wait, until I cracked this morning, following another 5am, eyes stuck to the lids, wake up call, and went to a walk in GP to see if there was anything he could prescribe. He just heard "my eyes are sticking together" and prescribed a chloramphenicol antibiotic to use 4 times a day for the next week. I'm not holding out much hope because I have no itching or apparent inflammation. I have a very thin red band in my lower lid eyelash line that I can't tell whether it has always been there or not as it isn't hugely noticeable.

So I'm looking for advice. What do I need to say to the dermatologist when I see him? He's a top dermatologist in the UK so may have some weight. He expressly told me that in all his years he'd never seen a patient suffer any lasting side effects once the course was over and he'd prescribe Roaccutane to his own son if he had to, that's what persuaded me I was safe. He says he prescribes it at least every other day at doses much greater than I was on. Ideally, I'd see an Opthalmologist like, tomorrow, but with NHS waiting times, It will likely be months. And my glands will be even further down the line, they're probably already past the point of no return. Even seeing an Opthalmo might not help, as there doesn't seem to be much that can be done. I really don't have enough money to pursue private options, as I recently bought a house and piled all my savings into it.

Any advice on what I can do would be greatly appreciated.

I've read a fair bit in these forums. plugs don't seem to have helped this sort of dry eye. We don't have Restasis in the UK. I have yet to find out whether any non-specialist eye doctors can prescribe a tetracycline course, or would even consider it. Even then, would that help much? I can't personally see any visible signs of inflammation apart from the red glands, and as I said, that may be completely normal, my sister's look similar. I know about Scleral lenses if things get bad, but as I said, money would be an issue on that front and I'm not sure that they'd help this type of dry eye. We don't have Lacrisert in the UK either. I'm afraid of fish oil as I'd started taking it again when all this started, and I've read something about the levels of Vitamin A affecting people who have taken Accutane, which is a close relation to high dose vitamin A. I'm at a loss really.

I have a million theories. Best case scenario is that my glands reawakened and are pushing the inflammatory oils into my eye (although it's two weeks now and it feels worse if anything). That's my dream scenario. Worst case is that they are stuck like this and will simply get worse as I age.

I know it's a topic that's been on the forum before, but a lot of those users don't seem to visit any more. I've messaged a few.

If anyone takes the time to read all that....thank you so much.

If anyone has any advice, it would be most gratefully received.

J

[Tyrantix]

Hi Jaybo,

I made an account just to reply.

Accutane is a very strange drug. I would love to say that it is poison en it should be taken of the market, but unfortunately it helps allot of acne victims without leaving (semi?)-permanent side effects.

Long story short, I took Accutane for 9 months with only 20mg a day.
Just like you, my acne just vanished within 5 weeks. (I had a mild form of acne which slowly crept from my face to my back/arms. I was so done with it).
My derm was amazed to see it disappear so quickly. She never saw anything like it.
Because I had very, very dry lips/skin she said we shouldn't increase the dose (which I’m very thankful for, it could have been a lot worse).
I finished the course in 9 months, and I thought all was good.

Until my very last 2 weeks, I woke up in the night with extremely dry eyes. This continued for a few days and I made an appointment with my GP. He said my cornea was slightly damaged by the dryness and I should use eye gel for the night and make an appointment with the eye doctor. Luckily my cornea healed but the eye doctors are pretty much useless when it comes to dry eyes. They don't really see it as a disease so they won't do anything about it but give you tons of eye drops. (Eye drops don't really benefit my eyes much, I’ve tried a dozen.)

Currently I am seeing a optometrist which has 2 more post-Accutane dry eye patients. They have do recover a bit but very, very slowly she says. My last Accutane pill was about 1 year and 3 months ago and my eyes have improved a little bit, but they are still far from what they used to be. I still use eye gel at night (vita-pos) which is the best thing I found so far. I use some basic over the counter eye drops about 3/4 times a day just because it makes me think it helps and my eyes feel slightly better for a few minutes haha.. My eyes are red/veiny at all times and I hate looking in the mirror because of that. I've tried supplements, fish oil/membrasin/borage oil but they do nothing. My skin is still very dry but I can treat that with a good moisturizer. I've had sore joints for about 2-3 months after taking my last pill, but after using glucosamine it disappeared thankfully.

Currently I’m left with a dry skin/lips which I can treat with a good moisturizer and dry eyes/mouth. I've quit drinking soft drinks and other sugary stuff because I don't want tooth decay on my age (I’m only 20). All is manageable except for the dry eyes. It is just a horrible condition. Supplements won't do anything for my eyes (it feels like my body can't absorb any fatty acids?) or my skin. Warm compresses only make my eyes more veiny/red. My meibomian glands seem to release some oils, but not nearly enough. When I yawn I am still able to produce tears, but they evaporate almost instantly (or at least it feels like that).

I'm still convinced this dryness has something to do with the gut. Probiotics don't seem to help me either but I have only tried 1.
Do you have any other side effects apart from the dry eyes?

[Jaybo]

Hi, yeah, things have been strange with me. I stopped five months ago.

It's odd because my dry eyes went to hell in the space of a few days, 5 weeks after finishing my course and after an initial spell of improvement. I'm glad I stopped early, although I think that the amounts we took would have been similar, because I took various amounts up to 60mg a day, but if you average it out, it was around 40mg for 4 months and 1 week. I weigh 83kg, so the dose would have been half of what would usually be prescribed for my weight based on the 120-150mg/kg formula that dermatologists use.

My skin has become less dry of late. There was a point towards the end of my course, and for about 6 weeks after, where I'd moisturise and my skin would still feel dry. This sounds odd but literally, I'd moisturise, and a few hours later, it would just be gone, like it sat on the surface and then evaporated. The last six weeks or so, by the time I get to the evening, my face even feels a tiny bit oily and a few very small spots have returned. I'm taking this as a good thing.

My eyes have been hell since the beginning of November. Despite the original advice from my dermatologist being to smother my eyes in ointment at night and to wake up for half an hour to air them if necessary, I saw a dry eye specialist who advised that I use only a small amount of ointment, literally about 0.5cm worth. After putting tonnes of the ointment in my eyes for about 10 weeks straight, I've started agreeing with the conclusion that it can't be doing my eyes much good.

Unlike you, none of the specialists who looked at my eyes when they were at there worst mentioned any damage to my eye, they were just very red and bloodshot. The pain and discomfort obviously couldn't be seen, but I can assure you it was hell. Every time I blinked it felt like someone was rubbing a finger over my eye.

I have another thread on here which details that a recent assessment (which was very useful and way better than the useless NHS appointments I've had) said that my tear production seemed good and my meibomians weren't in too bad a condition. Just one drop out and a few blocked. I was really worried that they'd have been devastated, along with my tear production, by the horrible drug. Of course, I have to be vigilant now, as this could still happen. Once I knew the tear production/oils/glands were all fairly normal looking, it gave me a bit more feel for what I was dealing with. I saw the specialist about 2 weeks ago now, and for a week following, I put much less ointment in. Then about a week ago, I thought I'd try sleeping with just drops. I was afraid the first night, and woke up to put some ointment in because I was so afraid of the horrid feeling I felt in November. The next night though, I slept through. I don't want to say it's an improvement just yet, because it's such early days, and the last 4 months have been terrible, but let's say, things are different this week.

I have never had any allergies, but last week I thought I'd try an oral antihistamine, despite trying before with no effect, and for some reason, things have felt marginally better. My eyes are still incredibly bloodshot but look less angry. the last 4 nights now I have slept without anything in my eyes and, in conjunction with the antihistamine, my eyes have felt noticeably better. Three weeks ago, I was still having days where I was completely obsessed with the discomfort in my eyes. The last week or so, I've had days where I've been able to distract myself, which was impossible before. I honestly have no idea what's going on. It could be that the dryness has created an allergy that I didn't previously have (I have literally, never been allergic to anything in my 28 year life) and that could have been making my situation a million times worse. My eyes are still bad, but I'm doing better the last 10 days or so.

If you ask me, my symptoms (horrible eyes/burning joints) look a lot like those that you'd find with a case of reactive arthritis, so I agree with the possibility of this all stemming from the gut. I wonder whether the accutane has damaged the stomach lining in the same way as a stomach infection might (it has been linked with crohns etc in the past), allowing bacteria/foreign matter to make its way into the blood stream and affect the joints/eyes etc. I'm also wondering whether the overload of synthetic vitamin A has knocked other vitamins out of whack. I read somewhere that accutane binds to the same receptors as vitamin D in the gut, and has an effect on copper, so who knows what deficiencies it could cause. I think this might reflect why antihistamines are helping, because if there is some sort of immune dysfunction causing my eye issues, I have read accounts of antihistamines helping people with various arthritic ailments, so the antihistamine could be helping in a similar way.

Just a few things: Have you had your meibomian glands assessed to see if there has been any drop out or if any are clogged?
Secondly, my eyes have been looking better since I've started to pull away from the ointments. It's early days, so things could go downhill all of a sudden yet, but if you think about it, the veins are your eyes way of trying to get more oxygen etc. Having ointment in them would be similar to constantly wearing contacts, in that the eyes would never get the chance to properly breathe through all of the oil etc in the ointment, so it makes sense that they would get bloodshot in a similar way as sleeping with contacts in. The ointment would also be present for a good portion of the following day also, so I think that the ointment could be clogging the meibomians itself. When I had mine expressed, and saw the yellowy plugs come out, it seemed obvious to me that a layer of petroleum based ointment could block them in a similar way. The whole point of putting petroleum jelly on the skin is to stop moisture escaping, so it would have a similar effect the opposite way round, stopping important stuff getting into they eyes.

Sorry if this post is a little chaotic, I've made a few posts and I forget what I've covered elsewhere.

I also still have the dry mouth which is worst at night. It seems to have become worse lately. When I was on the drug, it was just at night. And it started on the second day of my course. However, in the past few months, it seems to have started to continue through the day. I know that a B12 deficiency can cause dry/burning mouth, so I'm wondering if this could be a deficiency also.

My lingering side effects are:

Dry skin (improving, though hands are still dry)
Dry mouth
Dry lips (improving but dry out significantly at night)
Dry eyes (possibly improving)
Dry hair (improving)
Hair shedding
Joint pain
Dry mucous membranes (improving, certain "personal areas" are certainly less dry)

Let me know if you have any other questions.

[Tyrantix]

Jaybo,

Sorry for the late reply, I have been very busy finishing schoolwork last week. Luckily I managed to finish everything in time.

The antihistamine seems very interesting. I have mild hay fever symptoms, although they have been gradually decreasing as I am becoming older. Other than that I am allergic to cat hairs I think? But I have used oral antihistamine for the hay fever some years ago (It wasn't very effective though, so I stopped). Which kind of oral antihistamine are you using? I might give that a try.

I've read on the forums that multivitamins could help. The only thing I am now using is fish oil/borage oil. I wish we could persuade a specialist to look into the actual effect of Accutane on the gut. Have you had your blood tested on any deficiencies? I was thinking of doing so in the future.

I've been to a dry eye specialist yesterday (third time now) and she says that my eyes are slowly improving. My meibomian glands are producing more oil than before and she recommends squeezing the lids 2-3 times a day now that the oil is a bit more liquid instead of a solidified wax-like structure. They were definitely blocked 4 months ago. The redness in my eyes is still more or less the same. Not very bad, but not white either. My eye lids are not inflamed or anything so the overall picture as of now is: healthy but dry eyes.

Sleeping without drops would be a nightmare for me. I should try it some time but for now i'm just too scared that I will damage my cornea again.

I do hope we get better soon.

Edit: I was just reading up on some of your post, did you have any effect whilst doing a course of doxycycline?