Accutane / Acne meds and dry eye

[Rebecca Petris]

I came across a website called acne.org recently. They have a heavily trafficked bulletin board at http://www.acne.org/messageboard/.

Those of you who are on, or have been on, Accutane may want to check it out. Like DEZ it's run by a patient. (Be careful though, if you do go there you should not post about DEZ because like most health boards they have a strong non solicitation policy to prevent abuse.)

I had a chat this afternoon with the guy who started it, Dan. It's very interesting - I think we're seeing two sides of the same coin. There are clearly many people with acne so severe that they cannot live with it and are happy to accept any side effects from Accutane, e.g. joint pain, dry eye, because of its superior efficacy in treating acne - while on the other hand what we've been seeing here from time to time are people with dry eye so severe it 'outshouts' any other health problem.

[Vicki In Oregon]

i would guess they are willing to take the risks because they may not know what it feels like to have severely dry eyes. If they had a chance to experience it, i would bet many would live with the acne or find another solution and not think twice about it. i have not gone to the link myself. Before June of this year if someone mentioned thye have dry eyes i would not have thought much of it because it does not sound so bad. Nor did i know about the importance of tears the eyes make every minute on healthy eyes individuals. You just dont think about something that works. I think this is a good article for all people who take their eyes for granted like I too did before June:

http://www.answersingenesis.org/crea...5/i4/tears.asp

[Rebecca Petris]

Actually I was speaking of people who do have dry eye. Not necessarily in as severe a form as the worst cases here, but enough to be affecting life a great deal.

[SusieD]

i would guess they are willing to take the risks because they may not know what it feels like to have severely dry eyes. If they had a chance to experience it, i would bet many would live with the acne or find another solution and not think twice about it. i have not gone to the link myself. Before June of this year if someone mentioned thye have dry eyes i would not have thought much of it because it does not sound so bad. Nor did i know about the importance of tears the eyes make every minute on healthy eyes individuals. You just dont think about something that works. I think this is a good article for all people who take their eyes for granted like I too did before June:

http://www.answersingenesis.org/crea...5/i4/tears.asp

NONE of us knows what its like to live with severely dry eyes till we get it.

[np1981]

NONE of us knows what its like to live with severely dry eyes till we get it.

Most of the doctors I saw when I first started out, don't have a clue either.

[AccutaneJay]

I'm not sure...

At the time I had acne (before Accutane), I was desperate for a "cure," and I did not care about any potential long-term side affects, although I was young, naive, and really was not informed that any long-term side affects were associated with the medication.

Ultimately, if I knew that dry eye would have been a long-term, perhaps even permanent side affect ( ) of the medication, I would not have gone on it. I have also found the most natural cure for acne, which is a strict diet, and really wish I knew then what I know now because I could have great skin and healthy eyes at the same time, but am now stuck with great skin , but also unhealthy, chronic dry eye

Because of the connections between diet and acne that I am now aware of, I personally believe this medication should be removed from the market, especially because of the terrible side affects it comes with, some of which are long term. For me I now have IBS and chronic dry eye. I don't necessarily regret going on the medication, I just wish I was more informed and opened my eyes a little more and made a more informed, rational decision.

[SusieD]

Because of the connections between diet and acne that I am now aware of, I personally believe this medication should be removed from the market, especially because of the terrible side affects it comes with, some of which are long term. For me I now have IBS and chronic dry eye. I don't necessarily regret going on the medication, I just wish I was more informed and opened my eyes a little more and made a more informed, rational decision.

As an ex-user of this drug myself I can understand this point of view and used to hold it myself. My skin could perhaps have been controlled much better by a strict diet but I had tried special diets before without much success so I opted for the magic pill option instead. For those people who have extremely severe acne that also affects their body and leaves terrible scarring etc etc, I have no doubt accutane has been a life saver for them where nothing including mega-dose antibiotics have helped. There is also a severe form that is gram negative and often accutane is the only thing that can help.

For that reason, I think it does still have a place in the market. Originally it was reserved for these severe cases but in recent years it seems some derms hand it out to people who have a few pimples (I know of a few people who have got it under these circumstances). Fortunately these people have not suffered any long term effects.

As you say, because of the potentially severe side effects of this drug, I believe it should be under tighter control and reserved only for those cases where nothing else helps - it truly is a last resort thing and certainly should never be used as a first line treatment.

Thanks.

[Vicki In Oregon]

You can't realistically get every doctor in the world to be conservative about prescribing Accutane and also telling patients about side effects, espeically since dry eyes does not mean much to anyone who does not have them, even if it was mentioned by the doctor, the patient still has no idea what dry eyes means. So in light of that, Accutane, in my opinion, should be taken off the market. The company makes so much $ off the misery of many. There are other options to acne and even no option is better than the possiblity of permanent side effects of this nasty medication.

[SusieD]

Have you ever used this medication? Or suffered severe skin disease?

If you answered yes to either of these then fair enough - if not then Im sorry but you have no appreciation of what youre talking about.

There is the possibility of permanent/potentially serious side effects with a whole host of drugs on the market - should we ban them all? No, because there are people for whom these drugs change their lives (for better or worse but thats a risk with a lot of things).

Its like saying Lasik should be banned because of those who have had complications following it. The fact is there are still many people who have had lasik etc with no permanent problems.

At the end of the day - ANY drug or medical procedure has the potential for risks/side effects.

Believe me, I never thought I would be sat here defending this drug but it DOES still have a place. And why is it unrealistic to expect doctors to take a more conservative approach when prescribing it? I believe it already is harder to get in the states now.

[Vicki In Oregon]

Yes I had terrible acne as a teen but no I did not use Accutane. Many drugs can cause dry eyes and we cannot ban them all. But this one just seems to come up a lot. It seems to cause dry eyes more than others. And it is not a life saving drug so the risks outweigh the benefits in my humble opinion. I just really feel sorry for anyone that has dry eyes since I know how it feels and for those with severly dry eyes, not mild cases, I am certain that each one of those people would not have taken Accutane had they any idea what was in store for them. Anyway, that's it. This is kind of a mut point because there is nothing that I can do and does not help me nor the people on this board that are already suffering. If it was possible to prevent further suffering from new patients prescribed this drug, that would be ideal. Right now the company making accutane makes tons of money off it and until something happens where they don't make this kind of money, they have to incentive to research an improved Accutane that is less likely to have such terrible side effects. This is just my personal subjective opinion. Thank you.

[SusieD]

It doesnt come up that much to be honest there are only a handful of people on here in all. some have only experienced dry eye years after taking it so therefore cannot truly be sure that it was the sole cause. It seemed to be the catalyst for me, but Im not that selfish I would want to deny others the potential benefits of taking it.

Lasik is stated as the cause in many of the cases of dry eye on here - that isnt life saving either.

Good for you that your problems resolved without needing a drug like this, you were lucky.

Thats it for me too and may I apologise to Rebecca as this goes off the topic of dry eyes a little. Nonetheless, I feel it is a valid and important comment to make.

[Vicki In Oregon]

My problems are not resolved, I dont know why you say that. That is why I am here. My eyes are severely dry and painful and I have been diagnosed with Sjorgens. Also, I am not "selfish" and neither one of us is in a position to "deny people this drug" so I dont know the purpose of this posting. We don't have to agree nor name call. I am done with this thread. Thank you.

[Rebecca Petris]

Vicki,

My problems are not resolved, I dont know why you say that. That is why I am here.

SusieD was referring to the acne, not the eyes. I think she is simply saying that if you did not have acne bad enough to warrant use of Accutane then that's a good thing for you but also makes it difficult for you to see things from the perspective of someone with such severe acne that it's really badly limiting their quality of life. (Similar to the point I was making when I began this thread.)

I don't think she was trying to call you selfish. It wasn't perhaps the most appropriate use of the word but I think she's simply pointing out that medical treatment choices are a personal matter and we shouldn't be pre-judging for others what options ought to be available to them based on our own points of view. For all of us our perspective is of course going to be limited by our own experience.

[SusieD]

Thats exactly what I was saying - I did not call Vicki selfish. All I was saying was that It would be very easy after my experience to want this drug removed from the market (all hypothetical mind you!) but that it would be for selfish reasons and not taking into account how a lot of people may benefit from it. It was also clear I was not suggesting that the eye issues had resolved.

Obviously they didnt even bother to read my post properply before responding to it.

I rest my case.

[Rebecca Petris]

It's difficult to interpret tone on a bulletin board or to anticipate how things may came across. 'Nuff said about Accutane for the moment I guess.