My Big Dilemma!!!

[Bennyboy]

Hi Everyone

I am new to this board!!!!! Glad to be here. I've read all of your stories and was touched by so many of them.

I have had blepharitis and dry eye syndrome for 8 years now as a result of taking accutane 9 and a half years ago. I have tried just about everything to treat these problems but have never had a lot of luck. I recently scored my lowest mark ever on a schirper test so I have been extremely worried over what's going to happen to me. Willing to try anything to improve my condition my opth suggested low doses of cod liver oil. I have been using fish oil for the last two years but have not had any improvement from that. The words cod liver oil have always terrified me as they contain vitamin A and it was a vitamin A overdose that got me into this situation in the first place from the accutane.

At the lowest point in my life I made the decision to try it as I felt like I had nothing to lose any more. I truly didn't think that it would do anything as all the other supplements that were suggested to me had done nothing to improve my condition.

Well to my complete and utter shock within 2 hours of taking it my eyes started to feel really moist. I took another tablet that night and my eyes started to feel even better. It's been five days now and I have only used my steroid drops once in that time I have used artificial tears twice in that time and that was only after being in front of a computer for 7 hours.

I felt happy at first as I was just feeling so normal but that joy has quickly turned to confusion and fear!!! Am I risking my health even further taking these supplements?? I am only on a very low dose of cod liver. I take three capsules a day so the total of vitamin A I am ingesting is 1500 IU. When I was on accutane I think i was on something like 50 000 IU. So as you can see a lot less. I have asked my opth, my local doctor and several naturopaths their opinion. They all say that the dose I am taking is considered very low and will not cause any toxicity. My doctor says that he is willing to send me for liver and blood tests regularly to make sure I have no toxicity. They have also all told me that the vitamin a in cod liver oil is different to the vitamin a in accutane. Vitamin A in accutane and multi vitamins is chemically made cod liver is natural so I have even less to worry about.

My opth also wants to me to take BioTears as soon as it becomes available in Australia as she thinks it will probably work for me as I am having such an improvement with cod liver. BioTears has vitamin a in it too. (bout the same IU as what i am taking now) It seems all future improved treatments are going to involve vitamin a which makes me very very nervous.

I have had a few headaches since taking the cod liver, but I also gave up caffeine on that same day and everyone believes that is what is causing the headaches. It makes sense cos when I quit caffeine a few years ago I got similiar headaches.

What really terrifies me is that a lot of anti accutane websites say that people who have ever taken accutane should not under any circumstances take cod liver oil for the rest of their lives. It is not doctors saying this though it is people who have taken accutane and believe that the vitamin a toxicity never leaves your system. All my health care professionals say they have heard of accutane users being told not to take cod liver during treatment but never after especially a long time after.

Even though accutane left me with bleph, dry eye and crohn's disease (which I haven't had symptoms of for 2 years) blood tests I have taken have never ever shown that I ever had or have ever had vitamin a toxicity.

I am just so confused. I don't think I have ever been this torn in my life. Does anyone have any advice?

Ben

[TARYN]

cod liver oil

Hi Benny,

What is your doctor or naturopath's opinion on cod liver oil vs. flax seed oil. Do they both think Biotears is the best of the 3?

[SusieD]

Hi

I was on accutane too. I have to say, I can understand you're concerns regarding the vitamin A but I really think you are worrying unnecessarily. Accutane (Isotretinoin) is a synthetic retinoid that is related to vitamin A - it is NOT the same as taking Vitamin A as a supplement - if it were people with acne all around the world would be stocking up on the vitamins! Isotretinoin is more complex in the way it works, so none of the supplements you are taking or likely to take are going to act in the same way as the accutane anyway.

If these supplements are working for you - be grateful. Seriously! keep doing what you're doing, at the dose you're on its unlikely to cause you problems.

This is one of those things where 'less is more' if you know what I mean. Just because something causes you a problem at a large dose - does not mean you wont benefit from a taking a small dose. I would think virtually everything is bad for you if you overdo it - which is essentially what you do when you take a drug like this. Its just unfortunate that there are those who have to deal with every side effect there is - whereas others seem unaffected by it at all!

Stop worrying!

[Lucy]

Benny, in addition to the measures you have already taken, you might want to try the eye drops available on this website.

Dwelle, Dakrina and NutraTear are available for a very reasonable price and have helped many of us. They do not help everyone. However, they have been my main drops for the past 4 or 5 years. I suggest you try them. You might be in for a good surprise.

If you are spending lots of $$ on supplements and all the other things we do, the drops are a mere drop in the bucket financially. I have no financial interest in the drops.

There are a few others on the board with dry eyes from Accutane, Untkicker being the first one that comes to mind.

[untkicker29]

BennyBoy,
I too have dry eyes from accutane, and have been dealing with it for over a year and a half now. That's great that you found something that is helping you. I have only in the last month and a half finally gotten some relief of my symptoms. Not alot of relief, but to the point now where it doesnt keep me from doing everything I want to do on any given day.

Have you ever taken Doxycycline? That is what I have been on for 3 months now, and I don't know 100% if that's what the improvement is from, but it is the only new thing I have added to my treatment.

What about plugs? I am actually going tomorrow to get plugs in my right eye because it much worse as far as symptoms go.

[Bennyboy]

Hi Benny,

What is your doctor or naturopath's opinion on cod liver oil vs. flax seed oil. Do they both think Biotears is the best of the 3?

They all think a combination of fish oil, flaxseed oil and cod liver oil is good. Which is what I am doing at the moment. So maybe it is the combo of the three that is helping me not just the cod liver oil. BioTears contains all three in just one capsule so I think that is why they think IT WILL BE MORE BENEFICIAL FOR ME.

[Bennyboy]

BennyBoy,
I too have dry eyes from accutane, and have been dealing with it for over a year and a half now. That's great that you found something that is helping you. I have only in the last month and a half finally gotten some relief of my symptoms. Not alot of relief, but to the point now where it doesnt keep me from doing everything I want to do on any given day.

Have you ever taken Doxycycline? That is what I have been on for 3 months now, and I don't know 100% if that's what the improvement is from, but it is the only new thing I have added to my treatment.

What about plugs? I am actually going tomorrow to get plugs in my right eye because it much worse as far as symptoms go.

Yes I have been on Doxycyline on and off for a number of years it clears up my belpharitis beautifully but still leaves my eyes very dry.

I have considered plugs but I I think they may irritate me. I don't know. I'm just going to keep taking my vitamin combo at the monet if I get really dry eyes again. I will def. consider plugs. Please let us know how you go with them.

[Bennyboy]

[QUOTE=Lucy]Benny, in addition to the measures you have already taken, you might want to try the eye drops available on this website.

Dwelle, Dakrina and NutraTear are available for a very reasonable price and have helped many of us. They do not help everyone. However, they have been my main drops for the past 4 or 5 years. I suggest you try them. You might be in for a good surprise.

If you are spending lots of $$ on supplements and all the other things we do, the drops are a mere drop in the bucket financially. I have no financial interest in the drops.

There are a few others on the board with dry eyes from Accutane, Untkicker being the first one that comes to mind.[/QUOTE


I live in Australia are they able to be ordered internationally??

[Bennyboy]

Hi

I was on accutane too. I have to say, I can understand you're concerns regarding the vitamin A but I really think you are worrying unnecessarily. Accutane (Isotretinoin) is a synthetic retinoid that is related to vitamin A - it is NOT the same as taking Vitamin A as a supplement - if it were people with acne all around the world would be stocking up on the vitamins! Isotretinoin is more complex in the way it works, so none of the supplements you are taking or likely to take are going to act in the same way as the accutane anyway.

If these supplements are working for you - be grateful. Seriously! keep doing what you're doing, at the dose you're on its unlikely to cause you problems.

This is one of those things where 'less is more' if you know what I mean. Just because something causes you a problem at a large dose - does not mean you wont benefit from a taking a small dose. I would think virtually everything is bad for you if you overdo it - which is essentially what you do when you take a drug like this. Its just unfortunate that there are those who have to deal with every side effect there is - whereas others seem unaffected by it at all!

Stop worrying!

You are probably right I am overreacting a little bit, but the words "vitamin a" have terrified me for 8 years now because I immediately associate it with accutane. However, I keep hearing all these stories about how people who have been on accutyane have now completely cut Vitamin A out of their diet to try and get better. They are probably just kidding themselves.

I also know a couple of people who took accutane who had no side effects whatsoever. What annoys me is that they firmly believe that there are no side effects at all and all of us who have problems since would have got them anyway. I have even had a few doctors who have told me that. I felt like slapping them haha!!!!

[Bennyboy]

BennyBoy,
I too have dry eyes from accutane, and have been dealing with it for over a year and a half now. That's great that you found something that is helping you. I have only in the last month and a half finally gotten some relief of my symptoms. Not alot of relief, but to the point now where it doesnt keep me from doing everything I want to do on any given day.

Have you ever taken Doxycycline? That is what I have been on for 3 months now, and I don't know 100% if that's what the improvement is from, but it is the only new thing I have added to my treatment.

What about plugs? I am actually going tomorrow to get plugs in my right eye because it much worse as far as symptoms go.

Hiya

I noticed in another post that you were trying biotears. Have you had much luck with them??

[sazy123]

Hiya

i was taking cod liver oil supplements for ages. But didnt notice any difference on them. my eyes were feeling great for ages. But have gone abit crap again since the other day possibly due to the morning after pill. but i havent taken any cod liver oil for a few weeks. my natropath said to avoid something to do with the liver of the fish and contamination. Anyway i might take a few more just in case its that which was helping. but it probally wasnt as i didnt notice anything for ages..

[ace]

I got dry eyes from Retin A(acne medication), I also took accutane after which probably made my dry eye situation worse. Is there somewhere on this site where people tell how they got dry eyes. I think it would be cool to have a poll.

[Rebecca Petris]

Survey

Is there somewhere on this site where people tell how they got dry eyes. I think it would be cool to have a poll.

Absolutely!

At present there is only the registration page which asks what your cause(s) of dry eye are, if known. It doesn't have a way to specify a particular medication.

The bulletin board itself has a built-in 'post-a-poll' feature. Click 'New thread', then scroll down towards the button of the screen to see the options. However, it allows only up to 10 choices - not enough for the causes of dry eye.

To be honest I have had 'buy and install some decent survey software and write some interesting polls' on my to-do list for longer than I care to admit!! Seems like every time I have tested out and compared various software options I have gotten so far and no further and then it went back on the pile of 'stuff to do'. If anybody reading this actually has a recommendation for a specific package that doesn't break the bank I'd love to hear any suggestions.

A thought: Maybe we could just do something free-form, as a 'sticky' post, asking everyone to post briefly their dry eye cause. That way we could get some more specific information to develop an exhaustive list before running a more automated poll?