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#15227 - 04/17/02 11:44 PM The Accutane debate heats up again!
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
So have we all heard about the mom suing Roche saying that Accutane poisoned her son and that led to him crashing his plane into a Florida building? http://story.news.yahoo.com/news?tmpl=story&u=/nm/20020417/hl_nm/crime_acne_1
And there was a story a few months ago on Dateline about State Representative Bart Stupak whose son committed suicide and they blame Accutane.
When I was searching for this story, I was really surprised to find that there is an Accutane/Suicide/Litigation support page, http://www.accutane-suicide-help.com AND an Accutane Litigation group online, http://www.accutanelitigation.com .
So what's the story, has anyone here ever had depression or suicidal thoughts from taking the drug? I would think that with a large population of Accutane-takers, this would be the best place to find someone having these types of side-effects.
Or do you think maybe the drug just magnifies a problem people already have?

[This message has been edited by Glori (edited April 17, 2002).]

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#15228 - 04/19/02 05:20 AM Re: The Accutane debate heats up again!
nickywookie Offline
Member

Registered: 04/15/02
Posts: 20
Loc: new zealand
I use Neotigason Glori that makes me feel blue/mild depression as well. But the doctor told me that could happen.

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#15229 - 04/20/02 12:29 AM Re: The Accutane debate heats up again!
Anonymous
Unregistered


Well,
I took accutane from age 16 to 26, if anything it was an antidepressant to me. I mean we have a genetic skin disorder, accutane doesn't cure it but it minimizes the symptoms and sometimes makes them unnoticeable. So what is depressing about that? Things could have been much worse for me at that age without accutane considering it was my high school years and college days. Socializing is very important at that age. I can honestly say that accutane never made me anymore depressed then I might have already been. One other thing, Tatiana, what kind of doctor puts a 4 year old on accutane? Also, accutane stays in your system for years, we all know that. So if there was no trace of accutane in that kids blood he hadn't taken it in a long time. I am no fan of accutane at all, I know it works well for some people and has minimal side effects for them and some of us have severe side effects from it. I think accutane is an outdated drug now, at least for ichthyosis treatment, soriatane seems to be the new thing and requires a smaller dose and boasts less side effects. Now I'm rambling too, my point is that boy obviously had other problems not related to accutane.
Keith.

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#15230 - 04/20/02 04:53 PM Re: The Accutane debate heats up again!
Anonymous
Unregistered


Don't sugar coat it Tat, I never questioned what kind of parents you had. They have the final say as to whether you take accutane or not. All parents want to see their children have a better quality of life, period. I truly am happy that you had no side effects. Imagine what could have happened though. Supposing you did have side effects from it that effected your bone structure or liver functions permanently. If they aren't found by the doctor through the "normal" tests at first, how does a 4 year old convey this to the doctor? Now the child may have permanent side effects that will be with them for the rest of their lives and they STILL have ichthyosis on top of it all. It is unfortunate that we have to be the "ignorance police" to make things easier for ourselves and our children, which ever the case may be. We have ichthyosis no matter what drugs we use to hide it or suppress it. What happens when we have to detox from retinoids? You have to deal with that "social trauma" at some time in your life. We're still the same person on the inside our outside just looks different and we are much less comfortable. So if someone doesn't "like" you or want to "hang out" with you when your ichthyosis is at its worst they aren't really much of a friend anyway are they? There may come a day when we/you can't take retinoids anymore for whatever reason it maybe, pregnancy, side effects, etc. What then? Taking retinoids should be for your own benefit, not to look more pleasing to others. Make no mistake, they are not one in the same. Try taking a break from your meds, then you will see who truly loves you and who your friends are. I don't want to engage in an I'm right your wrong post battle. I just want anyone who comes to this site to know exactly what they are facing, the benefits as well as the downsides to it. Before anyone writes back to personally blast me, don't! It will only fall upon deaf ears. I took accutane for 10 years, so i know the "benefits". I also have permanent painful side effects that are getting worse. I will get off my soap box now. Have a nice day [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Keith.

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#15231 - 04/21/02 01:28 AM Re: The Accutane debate heats up again!
momofvi Offline
Member

Registered: 03/11/02
Posts: 20
Loc: Indiana, USA
I've never taken any retinoids personally so I won't even pretend to know anything about it. But I do agree with Keith's assessment. Your true friends are those who love you and support you, not in spite of your ichthyosis, but because of the beautiful person you are on the inside. Personally, I don't want to surround myself with superficial friends who judge me based on how my skin looks and I have found ways that are affective for me to maintain "comfortable" skin. I take care of my skin for me and to prevent as much pain as possible. I have people who tell me I'm beautiful and I have people that don't know I have any skin problems. There are people who assume things about my skin without ever asking. If you want to see how "normal" I look, Tat, you can see a pic of me on my website. www.iusb.edu/~jfwhite I am also raising an exceptional child who was born with congenital glaucoma. I know about being a parent. And I know that side effects are one of my first considerations. It is not fair to trade one problem for another and it is not fair for a parent to take that risk for a child who is not old enough to make an informed decision for themself, no matter how well-meaning they are. This is my opinion and no one has to agree, I just thought I would share. ~julene

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#15232 - 04/21/02 11:29 PM Re: The Accutane debate heats up again!
nickywookie Offline
Member

Registered: 04/15/02
Posts: 20
Loc: new zealand
Has anyone here ever taken Neo Tigason? If so how would you compare it with Accutane, I'm already mentally screwed up and I feel I could deal with it's side affects. I have suffered and had to deal with the "Soical Truama" associated with EHK. BUT PLEASE OH PLEASE PEOPLE!!! Would you refrain from talking about having kids as I don't have to deal with this yet!!(ok i'll admit it, I don't want to have to).

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#15233 - 04/22/02 12:47 AM Re: The Accutane debate heats up again!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Nickywookie,

I have EHK and yes I took Neo Tigason just last year, but I cannot make a comparison with Accutane, because I have never taken that. Many years ago I was on Tigason. Both Tigason and Neo Tigason had disasterous results for me physically. I was not able to function AT ALL.

And yes, Neo Tigason did make me much more depressed than usual, and my moods were very irritable. I was unbearable to live with, but this could have been as a result of the pain and loss of mobility. My Psychiatrist and General Practitioner advised me to stop taking it. It was definately not for me.

I also felt for your plea for people to stop talking about having children. I don't have children either, and I think I am many years older than yourself, but I am comfortable with this now, and my beautiful 13 year old cat Kimberley is my baby. I also have a lot of psychological problems as a result of negative social experiences ect.

When I first discovered this BB I found it very hard to deal with because everyone seemed to cope and live such a normal life, and I felt like a failure, but I have since learned that we are all unique with unique abilities and ways of coping with Ichthyosis. Try to be happy and inspired by other people's achievements, and this may help you to grow and be more confident about your own self and abilities.

Take care and best wishes
Pauline

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#15234 - 04/22/02 01:52 PM Re: The Accutane debate heats up again!
momofvi Offline
Member

Registered: 03/11/02
Posts: 20
Loc: Indiana, USA
OK, I will refain from referring to my children. But let me say that I have had my losses due to ichthyosis and life growing up was not a walk in the park, it was pretty miserable to be more precise. But it is important to recognize our own self-worth and to see the beautiful person we are on the inside. No one else can see this person until we find it for ourselves. I lost a breast through masectomy in Oct this past year because of an infection caused by my ichthyosis so I still continue to battle problems with my self-image, but it's been the support I've received from my TRUE friends that has helped me to face this loss. I'm sorry to get on a soap box here, but I think it's important to realize that we have CAN have "normal" lives, it's just something that takes a lot of work. Try to find your true self and you will be happier, I promise. ~julene

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#15235 - 04/23/02 01:49 AM Re: The Accutane debate heats up again!
nickywookie Offline
Member

Registered: 04/15/02
Posts: 20
Loc: new zealand
Hi guys/gals, please let me explain myself, my plea from talking about having childen was just part of my warped sense of humor and was meant to be a light hearted joke (But no one got it HAHA!!). Even so it is a sensitive subject for me and i'm scared but at the same time I can laugh about it...no offense.

Yeah Pauline I hear you about the Neo Tigason, for me i'm already hard to deal with and I don't function very well, but for the social factors it helps with relating to others better at University so I make do with it for now.

Sometmes though I think I should become a crazy forest dweller grow a big beard and live in a cave.

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#15236 - 04/26/02 07:42 PM Re: The Accutane debate heats up again!
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
I just wanted to put my two cents in. I have been on accutane for 14 years and am starting to dislike it a lot. It is a total catch 22 because it does make me appear physically normal, but the fact that more and more I notice I feel really sad is making me question is it really worth it? Ya see the hard part for me is that I started at 16 when my social life really kicked in. Before I went on it I had a happy life. Of course I was picked on but somehow I didn't let this condition define me and pushed and pushed to be normal. But now after all these years I think it is going to be terribly difficult to go off of it. To be honest I feel ashamed when I think of how I will look. People at work only know me as is, as well as my friends (all but one who I've know since I was 16 and has seen me without being on accutane). Even the thought of my fiances family seeing me all red makes me want to cry even though my future mother-in-law said I could have pocadots all over me and they'd all still love me. But what I'm getting at is that the 'detox' of the accutane is far more mental than physical (although it stinks physically also). To be honest even though I have lived the life of a 'normal' person over the years and had a lot of fun, I think I would have been a far better person if I never went on accutane. That is truly how I feel. So I'm hoping to stay on it for 1 1/2 years more until after I'm married and then go off it for at least 1 1/2 years before I have children (don't believe the 1 month rule that Roche spouts out. Females need to be off it way longer because it sits in the fat cells and takes time to get out). But then I never want to go on it again. My life will be a bit harder I'm sure, but at least I won't be sad or losing my hair or doing damage to my bones, which is only slight right now, but whose to say it won't get worse. I'm sorry I'm rambling, but it's so important for people who are deciding on taking accutane to realize that most likely they will see great improvements physically but that mentally it may be too rough. Right now my fiance is concerned with how sad I've been. I wish everyone the best in their decision and nobody should judge another for that decision.
Lisa

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#15237 - 04/27/02 09:39 AM Re: The Accutane debate heats up again!
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
This discussion is really very interesting and made me think a lot about accutane and soriatane, which is the drug I am using for 12 years.
From my personal experience I can not really tell if the drug made me blue or depressed. There was a time when we thought I might be more often sad than average but that time is gone now so it is unclear if there is a connection.
The drug definitely helped me a lot. I started taking it at age 17, so during an important time in life. Before I started taking it I had a hard time in kindergarden, high school etc. because classmates, teachers, adults etc. were not able to react appropriately to it. The drug helped me to have a so called 'normal life' (the question of course is, what is normal) even though the skin disorder was still to some degree visible.
During that time I had sort of a chance to 'settle down'and to 'breath' a little, because less energy needed to be spent on skin care, holding your head high even if people stare at you and make comments etc.
During the last years I started realizing that in some ways the drug is a 'crutch' and also quite dangerous (bone changes etc. - no doctor told me, I found out on the Internet that soriatane can cause bone changes!). And inside the decision grew to get off the drug which I am doing these days. I found a doctor who is helping me to reduce the dose slowly and to work on finding other treatments (most of the treatments used in the US are not available here, e.g. all the exfoliating lotions etc.).
However, I am of course quite worried, as you are Lisa Marie, about getting off the drug. As in your situation, most friends etc. only know me with 'normal skin'. They know that I have a disorder but of course do not know what that will look like eventually. I am of course worried about their reactions but I also know, that family and friends are supportive. Still, going out and facing the world will get harder with the skin problems back in my life but I know that there are people that will support me and I also know that I can manage to deal with it again. I managed before I started taking the drug so I will manage now to, right?
The whole drug stuff seems to be a difficult and a very personal topic, there is no right, no wrong. It apparently can make life easier but it is still not a cure, it is only treating the symptons.

This are my two cents...
Sofie

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#15238 - 04/27/02 01:23 PM Re: The Accutane debate heats up again!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
I resubmit to this topic with reservation, as it is starting to make me quite angry. Not at the views of the people, but at the drugs themselves and the emotions and dilemmas that they arise.

It seems to me that for the whole part these drugs may be intended for psychological and social ease, rather than to ease current physical pain, as they may lead to more permanent pain in the long run.

They serve to make us more acceptable to society and that makes me angry, because we may pay a price for that in our latter years.

If society were educated to be more tolerant, and to appreciate inner beauty instead of the superficial kind, then we may not choose to take these drugs in the first place.

At the same time people also choose to give these drugs a try as an attempt to relieve physical discomfort and increase quality of life.

Having said all that I agree and feel for all viewpoints here. I feel that every person who has submitted their own viewpoint, is not judging anyone else, they are just being driven by their own experiences and emotions.

The parent who decides to put their 4 year old child on one of these drugs, is just trying to give their child the best chances in life, as is the teenager.

I remember vividly (aged 15) being told of a breakthrough in treatment, around 1979. The first swallow of Tigason, was like gold. After about 1 week, my whole palms lifted, it was so exciting. In the next few months this excitement turned to anger and disappointment. The dose was too severe for me, my mother had to feed me, I could not wear clothes, or go to school ect. However, the dermatologist could only see that the scale wasn't cleared enough so he increased the dose even more. I realised that this drug was not for my benefit, but to benefit society's acceptance of me. I kept hearing them say that they had to find the right dosage to reduce the odor, and scale.

I realise it is easy for me to have this reserved attitude towards these drugs, considering my experiences, but I can equally see why it must be so difficult for the people who haven't had much of their lives without these drugs, to consider stopping them.

All I can say is that if we can all try to accept our skin as normal no matter how it looks, then the decisions may be easier whatever way people choose to go.

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#15239 - 05/04/02 07:02 PM Re: The Accutane debate heats up again!
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I attempted suicide after I'd been taking Accutane for a few months. I was 13 years old at the time. Did Accutane cause the depression? No, absolutely not because I already had some pretty big problems and had issue with depression since I was at least 10 years old. Accutane may have magnified the depression somewhat, but I cannot blame it for my actions.

I'm thankful to whatever higher power there is that I didn't succeed in killing myself and grew up to gain the love of so many friends, recognize the love of my family, and meet my darling husband and his family.

Momofvi has the right of it "Your true friends are those who love you and support you, not in spite of your ichthyosis, but because of the beautiful person you are on the inside."
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15240 - 01/31/03 12:30 AM Re: The Accutane debate heats up again!
KatieCakes Offline
Member

Registered: 05/05/02
Posts: 118
Loc: Boston & South Attleboro, MA, ...
Hey all, I guess I found this topic late..but what would an accutane post be without me [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I have heard about both those cases where people balmed accutane, from personal experience I have had many bouts of depression but none of them related to accutane because I have had some really rough thing sto deal with besides my ichthyosis which I'm sure everyone has but I'm still a kid. Plus depression runs in my family...I'm learning to cope better and saw a pyschiatrist for awhile but all I'm saying is that for me accutane did not make me anymore depressed then I would have been in at certain times in my life. I think that the parents of those two people just needed a scapecoat..who wouldnt? Your child dies and you dont know what to think or who to blame...and parents never want to believe that maybe they didnt pay close enough attention...and even still some kids hide their feelings really well so it must have come as a total shock to them. I dnt blame them there..but it did make me kind of mad that they didnt research the topic before they started bringing it into the media and even congress...because there are huge regulations on the use of the drug now. I can only get certain amounts, i have to have a certain amount of bloodwork, and have to order it through the mail. I dont like accutane for making me appear better to others because I still get stares and comments and that ever popular,"Wow your really red , do you have a sunburn?" Which stil amazes me because if i ever saw someone who was sunburnt....i would never ask them or point it out..its so ignorant. Even teachers and a nun at my school come right out and say it. But I like how much more comfortable I feel. Anywho I', getting off topic. Thats my two cents.
Katie

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