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#1128 - 07/24/02 04:41 PM Re: Accutane
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
Katie...I did a little bit of research on accutane and have found negative and positive information about it. I would like to know if anyone else who has CIE has taken it and how they are affected. Also, Jordan's Dad took it for years and had none of the negative side affects that have been mentioned here...just wondering how much genetics have to do with how Jordan might react to it. The specialist she's supposed to see is Mary Spraker in Atlanta Georgia...anyone ever heard of her? I also have several relatives who are Physicians and would tell me the truth about accutane (to the best of their knowledge)...Jordan will be attending Camp Horizon in less than a month and I'll make sure she asks the staff and other campers plenty of questions about accutane...I just don't want to send Jordan into this blindly...so thank you all for the tremendous amount of information...it has given me alot to think about.

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#1129 - 07/25/02 12:50 PM Re: Accutane
Anonymous
Unregistered


Katie,
Why do you call it "brainwashing" when we tell our personal accutane experiences yet your persoanl positive experience isn't. The doctors may have recommended "trying" accutane to Jordan, but without a blood test beforehand they can't say it is for her. I personally know a family whose mother is on soriatane for ichthyosis but her daughters preliminary blood tests showed that her liver functions were already at a raised level so she was not allowed to go on it. I clearly pointed out in my post that some people handle accutane well and some don't. The whole reason for this board is to get information and share our experiences. The fact that you make statements in your post like "because my skin used to be so uncomfortable is the reason I love my accutane and because it makes me look better", the last half of this sentence contradicts everything you said about not being obsessed with appearance. Topped with the fact that at the mens discussion I asked you if you knew that you wouldn't be able to have kids for a while after going off accutane you told me "yeah, I know, I'll have to wait for like 2 months or something" tells me that you really don't know much about accutane except that it works for you. I'm not making this a personal vendetta against you, but if you are going to come here and tell us we're brainwashing Jordans mom you better have some facts to back it up. I do, in fact I have the literature straight from the drug manufacturer. I just want Jordans mom to have all the facts, after reading her last post I can see that she is now well prepared and well informed to make this decision. Have a nice day [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Keith.

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#1130 - 07/25/02 05:49 PM Re: Accutane
KatieCakes Offline
Member

Registered: 05/05/02
Posts: 118
Loc: Boston & South Attleboro, MA, ...
I'm sorry I said brainwashing..that was wrong but excuse me don't tell me that I care about my appearance and I don't know anything about Accutane..ye definetly I am on a serious drug and have been since I was nine and I have absolutely no knowledge about it and my parents would totally allow that. At the conference I found you to be rude and pushy...I am not a little kid and I do NOT care about appearance..I don't think anyone with ichthyosis does....so don't tell me that what I said contradicts that...maybe I didnt say it in just the right way ...but I do not take it for my appearance...and that really hurts that you would even think that...you know what I am not even gonna sit here and talk about this anymore..i am sorry for saying the word brainwashing but I was really upset because I felt like you tried to make me look like a fool at the men's group ...trying to act like I didnt know what Accutane can do ..I go to a wonderful dermatologist and I know everything I can know about Accutane..and I don't believe it takes longer than that to get out of your system because I trust my doctor ...soriatane or whatever is the drug that takes years to get out of your system. I don't wanna fight..i don't exactly come to the ichthyosis board to fight with people..I come for support. I gave Robin my info and you gave her yours...but please don't ever tell me I am concerned with my image....and please treat me like an equal and not some kid who is living in ignorance..you have your beliefs and I have mine.

Katie

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#1131 - 07/25/02 07:36 PM Re: Accutane
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
Tatiana...thank you soo much for what you said...I desperately wanted to diffuse the argument but didn't know how to go about it...you have definitely chosen a field of work you are well suited for. I just wanted to oce again thank everyone for their information about accutane and accutane related drugs. While everyone's experience is different, there was never a reason to assume that anyone's reason for taking it are shallow...I know very well how society treats people who look different from everyone else...it's wrong, but it is what it is. I now have more information about accutane so that Jordan isn't going into this blindly..I am armed with a series of questions for her dermatologists and specialists and am immensly grateful to everyone for their information concerning accutane...once agasin thank you all.

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#1132 - 07/25/02 11:29 PM Re: Accutane
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Robin,

Sounds like I'm a day late and a dollar short here - I'm guessing you already have much of the info that you wanted about retinoids.

Just a few add ons:

See some of my thoughts on an earlier post about my experience with Accutane: http://www.ichthyosis.com/ubb/Forum3/HTML/000009.html I think of myself as having lamellar; however, several of the dermatologists on the Foundation's Medical Advisory Board put me somewhere on the spectrum between lamellar and CIE - they definitely don't put me solidly on either end of the spectrum. So, perhaps you could consider my experiences at least partly indicative of what someone with CIE would experience.

As people have already said, whether to use a retinoid is an intensely personal decision (for you as a parent or for Jordan herself). The best you can do as a family is gather as much information as you can and make the most informed decision possible. And then continue to periodically re-evaluate your decision, whatever it was.

Mary Spraker is an outstanding derm who is well known for having expertise in ichthyosis. She's been very generous with her support of the Foundation for Ichthyosis. She's a very good physician, from whom you should expect excellent information and advice.

Please also keep in mind that not all retinoids are created equal: there are some differences between Accutane and Soriatane, and not just in the half life. So try to keep the info that you here about each drug distinct in your mind. Some info is true of all retinoids, some is very specific to which particular drug.

Take that for whatever it's worth (that and a $1.49 will get you a cup of coffee, as they say),

Laura

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#1133 - 07/26/02 01:05 AM Re: Accutane
Anonymous
Unregistered


Katie,
I asked you one question at the conference when you volunteered to come in and share your accutane experience in the mens/dads discussion, just one question, and that makes me rude and pushy. Soriatane, which was "created" as an alternative to accutane because it has less severe side effects then accutane and supposedly stays in your body for a shorter period of time stays in your body for at least two years. This is straight from the manufacturer, so it probably stays in longer then that. I asked my dermatologist about this and he didn't tell me what he personally thought, he gave me the brochure he had from the drug company. He had a stack of them sitting right there, how convenient. Dr Elias also said on sunday that they really don't know how long it stays in your body for sure, for all they know it could be more then ten years, it hasn't been around long enough to know the real long term effects. Perhaps next time you are at your derm you can ask him for a copy of these specs. that way you won't just be taking his/her word for it and you won't think i am just pulling these numbers out of a hat. Don't get mad, lose your composure or be angry with me. I didn't ask you that question at the conference to make you look like a fool, I was wondering if you knew the possible repercussions of taking accutane long term. I don't think you are a stupid kid either, in fact I think most people with ichthyosis mature at a much faster rate because of the things we have to deal with. So I'll agree with you on one thing, lets end it here.
Keith

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#1134 - 07/26/02 02:41 AM Re: Accutane
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Keith - I soo do not want to pick any kind of fight with you. I have the utmost respect for how generous you are with your time and knowledge here. I just want to gently point out a very minor fine point, just so other people here don't get confused:

I get the sense that there is an enormous amount of confusion between the different retinoids, esp. Accutane and Soriatane. Soriatane was developed as an alternative to Tegison, not Accutane. Accutane and Soriatane are two different retinoids. Soriatane replaced Tegison. Both Soriatane and Tegison have long half lives; Accutane has a very short half life. Much of the sales literature would have you believe that Soriatane is supposed to the "latest and greatest" and therefore safest retinoid; I've heard a fair number of people whom I trust say that they think that's not true - that Accutane is still the "safest" retinoid. Especially for women of child-bearing ages, most responsible physicians wil only recommend Accutane. And that's something that Drs. Elias and Williams clarified at the conference (that they'd only recommend Accutane to women of child bearing age, never Soriatane, because of the half life issue).

Fine point, not really relevant to the points you were making Keith. However, it may be very important and relevant to someone who is trying to make a decision about whether to use a retinoid, and if so, which one. Soriatane and Accutane are not the same - so not only do you need to weigh the risks of a retinoid (any retinoid), you also need to weight the different risks of the different retinoids.

I'm not trying to add any fuel to an already emotional fire here, honest. Just clarifying a somewhat fine point.

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#1135 - 07/26/02 04:05 AM Re: Accutane
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello All
Just wanted to add my two cents worth, from what I have read about Tegison, Roche Pharmacueticals took Tegison off the market because they were afraid of the long term side affects and replaced it with Soriatane, or outside the U.S it is called Neotigason.To those at the Seattle conference, could you tell me what was discussed at the session with Drs. Williams and Elias. I was helping with the Ichthyosis Support network discussion group and couldnt attend.Did anyone mention the studies with the Tazorac pill and when it will gain FDA approval. My local derm says it wont have the side affects of Accutane or Soritain so hopefully it will be a good alternative.Also, any discussion on gene therapy?Whats new in research?ETC. If the info came from Dr. Williams and Elias, I take it as gospel and have the utmost respect for them both.Fill me in gang,
Lachydrin Les
_________________________
Les Avakian

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#1136 - 07/26/02 12:53 PM Re: Accutane
Anonymous
Unregistered


Thanks Laura,
I know the original topic was what we thought about a child taking accutane. Then it turned into how long it stays in your body. I know they say it is out of your body after a couple months, at least that is how long they ask you to detox for. My question half way through all this was how long do you have to wait before becoming pregnant after being on accutane, soriatane, or tegison? It's much longer then 2 months for any of them. Thanks for clearing that up. Les, I haven't heard anything on the new tazorac pill yet, as far as the side effects that it would have I don't really know. I do know that they told me that the tazorac gel has no side effects because it is topical and not taken orally. Lately I have been reading how this is practically an impossible claim, being that your skin is your largest organ and you cover it with a retinoid how could it not "soak" in and enter your blood stream. I fear that like accutane and all the others they will not know until years down the line. I did hear at the conference that, from whom I can't remember, that they are coming out with a new form of accutane that supposedly has even less side effects. Anyone else hear about this? As far as the genetic dicussion went, they have isolated our genetic mutations but they still can't change them, yet. I read about a test called PGD(predetermined genetic diagnosis) that they can do now if you would like to become pregnant and want your child to be free of any inherited disease. It's actually invitrofertilization, they take the womans eggs and mans sperm and fertilize them. Then through tests they can pick out which eggs will have ichthyosis, or any other inherited disease for that matter and which ones won't. They can also detemine which sex the baby will be. They then take the "good" egg or eggs and implant them in the mother. Guaranteeing your baby is free from what ever inherited disease you are trying to avoid. Supposedly this costs about $10,000.00 The big controversy is that now you are playing god. Many people won't do this because they feel you are killing a life when you disgard the other fertilized eggs. I'm still undecided on this. Anyone else want to share an opinion on this?
Keith.

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#1137 - 07/26/02 04:59 PM Re: Accutane
Beth Engerman Offline
Member

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
I guess what it comes down to is CHOICE. You make a choice whether or not to take a drug like accutane on the best information available to you. It doesn't matter what your reasons are for taking it, because those reasons are going to be different for everyone. However, a person should be able to make the choice to take a drug that has some potentially dangorous side affects. I do not and have never taken a retinoid for my ichthyosis, but I was given the option. When I was 16 my mom and dad and doctor sat with me and we discussed everything there was to discuss about taking a retinoid. I was old enough to understand what it would do for me and what the potential side effects were. After many many hours of thinking and debating I decided that taking accutane or a drug like it was not something that I wanted to do.

My hope is that parents with children that have ichthyosis take this into consideration. A person should be able to make a concious decision about whether or not they want to take a drug that could have some potentially harmful side effects. Help your kids as much as you can in any way you can until they are old enough to make a mature decsion about taking accutane or another drug like it. It is their body after all and they should be able to decide what happens to it. When they are old enough and mature enough to make that kind of decision, of course.



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"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela
_________________________
"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

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