Posted by: Robin

Accutane - 07/23/02 02:12 PM

My daughter Jordan is about to go and see a specialist who wants to see if she's a good candidate for accutane. Jordan has CIE and was told at the conference that she has something rare, white spots. What exactly will accutane do for her and what are the side affects?
Posted by: KatieCakes

Re: Accutane - 07/23/02 03:43 PM

Hey Robin, Well some people will tell you that Accutane isnt a good idea because it can have some serious side efeects. But I talked to Jordan about it at the conference and I think it is a great idea. I have been on it since I was nine and the most harsh side effect I've gotten is dry lips when i first started which can be cured by chapstick and some nose bleeds. but it has worked wonders for skin is 1000 times better because of Accutane. I have lamellar so it helps me in different ways but I believe it would halp even out her skin color and possibly get rid of the white spots. Also it would help her eyes become less tight and help with scaling. I know some people have had liver damage and such but when I first started I went for blood work every month and x rays once a month or as long as you take the right precautions it can only help. Plus no really really good medicine comes without possible side effects. If I still looked like I did when I was nine I think I would be much less confident and self sufficient..I feel so much better about myself and I think jordan will too. keep me posted when she does start it!

Posted by: kevin246

Re: Accutane - 07/23/02 06:57 PM

I, too, have lamellar. I began taking Accutane when I was 12, and quit taking it when I was 15. The appearance that Accutane gave me was not worth the side effects. I had vision problems, severe muscle aches and pains, as well as hardening of my bones. Then, to top it all off, the doctors then told me that I would have to have liver tests because they were unsure of what effects the doseages of Accutane were having. So, I finally quit taking it and learned to live with my appearance. As I have said in previous posts, there is no cure, we can only adjust our own level of comfort. But, I also understand what it means to be a child or teen and the importance of outward appearances.

Like KatieCakes said, though, just make sure that you follow the doctor's orders for follow-up visits. Good Luck!
Posted by: KatieCakes

Re: Accutane - 07/23/02 08:41 PM

Yes I am a teen and yes my appearance is important to me but so is feeling I said some people have had seriosu side effects but that doesnt mean no one should try them...all serious drugs have side effects...after every drug add on tv they explain what could happen. Not only does my skin appear better I feel so much better on Accutane I go over for two months in the summer to check on everything and to clear it out of my system and I hate when I am off...I am extremely dry and my scalp hurts and I itch more. It is your decision Robin but I think no matter what as long as you are precatious it wil work itself out for the best.

Posted by: Anonymous

Re: Accutane - 07/24/02 12:38 AM

I have ehk and took accutane for 10 years. I started when i was 16 and stopped when i was 26. I to had all the liver tests and xrays done while on accutane. I was always told that accutane effected your knees spine and wrists the worst, so that is what they xrayed. When I was 26 my hips started hurting so I had them checked out, it was from the accutane so I was promptly taken off. I'm almost 37 now and my hips cause me great pain EVERYDAY and are getting worse. Many of the things Katie said are true and some are not. Since Jordan has CIE, correct?, she will not have the tightness in her eyes so accutane for that is a waste. Some side effects are temporary, such as dry peeling lips and nose bleeds. But Skeletal damage is irreversible, so is liver damage. Some people can take accutane for years and have no permanent side effects others seem to get the worst of all of them. Also know(and I know Jordan is too young for this) that she will not be able to have kids for several years after stopping accutane. Don't let anyone tell you different about this, we have talked about this and researched this here on the board. Accutane will not get rid of the "redness" associated with some ichthyosis types, remember it thins our skin, and redness is a side effect of this. In my opinion Jordan is to young to be on accutane, I would wait until she is in her teens before starting her on accutane. Personally I would try to manage with creams and lotions before starting accutane. Like Kevin said, accutane is not a cure, it is only a cosmetic fix with potentially hazardous side effects. Why take the risk when you may be able to get good results with topical treatments that have no side effects. I understand the need/want for kids to look normal, I have a fairly severe case of ehk and never had accutane to rely on until I was almost an adult. It was tough but it's not impossible. Should you choose to put Jordan on accutane definently have her cbc chem panels checked frequently and get xrays of more then just the "usuall" problem areas. Let us know what you decide, I would like to know how things work out.
Posted by: pauline5

Re: Accutane - 07/24/02 04:08 AM

Hi Robin,

I know it can be very appealing and exciting at the prospect of finding new drugs that can make such a big difference to our appearance, and comfortableness of our skin. I couldn't wait to start on these types of drugs either at age 14, but I personally had disastrous results with a drug very similar to accutane, so I can't speak for this one....However I just advise you to make sure that your daughter has periodical bone density scans, as I had severe pain in the bones of my feet, and it was passed off as skin pain....I now have osteopenia of my feet, and osteoporosis in my spine and hips, and I am only 38 years old.....These are very hidden side-effects which we cannot become initially ill from, but we pay for it down the be very careful....

I feel in the long run, acceptance comes from within, and the potential side effects are just not worth the sacrifice for worrying about what other people think of us....But everyone has individual ideas and some have fabulous physical results...It is the hidden ones which worry me....

Keith has so much more bone and joint problems than me now, because he didn't seem to have the sensitivity to the drug, so he stayed on it for a much longer time than myself....whereas because it was so disabling for my skin, I may have been saved from far more skeletal damage....

Just my concerns and weariness, that is all..
All the best in whatever you decide
Regards Pauline.
Posted by: Robin

Re: Accutane - 07/24/02 12:52 PM

thank you all for the tremendous amount of information you've given me. I think what I will do is research a little more and decide if accutane is right for Jordan. If I decide not to give my ok then it will be up to Jordan when she turns 18. Im just not sure if the benefit is worth the possible side affects, since it could cause irreversible damage. Jordan's local dermatologist knew absolutely nothing about the possible liver and skeletal damage...that scares me, if he didn't know, maybe I wasnt asking the right person. You have all been so informative, Im glad this forum is here.
Posted by: pauline5

Re: Accutane - 07/24/02 01:30 PM

Hi Robyn,

I am glad you thought the responses were helpful....I kind of felt bad like I was being too negative....but I would hate your daughter to regret it down the track that is all.....One more thing...When you research these drugs, please do it independently, from journals ect...Don't necessarily rely on a dermatologist to tell you, (unless they are a longterm specialist of your daughter), as some may keep some of the side-effects from you to allay your fears, and to encourage your daughter to give it a try...This is just from my personal experience, as the bone changes were never announced to me.....

In regard to the liver damage....I had blood tests every week, and I still had some liver malfunction detected at one stage, and had to go off the drug for 6 months to give my liver time to go back to normal...

Also bear in mind that I may have been an extreme example of the negative effects of the tigason, also because of the type of icthyosis I have. I have a very sensitive type of EHK which affect the deeper layers of the skin, causing a lot of blistering....still that doesn't excuse the skeletal affects.

It is just so sad that these tigason type drugs have been the only real breakthrough to ease the discomfort of ichthyosis during the past 25 years, and they have to have these potential risks associated with is so cruel and I feel that drugs shouldn't be released onto the market (giving people false hope) when these effects exists.

Posted by: Robin

Re: Accutane - 07/24/02 02:27 PM

I don't know if this petains to the type of accutane we've been discussing but I thought the similarities were interesting...I found this on another forum board for people with side affects from taking accutane for Acne.

As a teenager I suffered like many others with acne. I sought help from the NHS and was soon under the care of my GP who started me on Minocycline which I took daily for a long period. Seeing that the Minocycline wasn't helping me as much as it could, the GP referred me to the Dermotologist who immediately started me on Roaccutane. I'll skip the details of the treatment and get to my reason for posting. At the age of 19 I started to get a neck pain which soon spread to my whole body. I was soon in constant pain (sharp pains) throughout my body, especially my joints. I would wake in the morning and hurt my ancles getting out of bed. I became very tired all the time and had no energy. I would come home from work and go straight to bed until morning. Looking at me, a young healthy man there was nothing wrong, and so people didn't really believe how much pain I was in. I spent the next 18 months experiencing this with little respite. Sometimes the pains would ease off but I had to adapt to it in order to cope. I had numerous trips to the GP and the specialists at the hospital who generally took lots of blood, lots of scans and x-rays, and came up with no answers. Unfortunately, painkilles didn't seem to work very well. After 18 months of pain and tiredness I finally got a result from the specialist. It wasn't a good result but at least we knew what was wrong. I have Lupus - a chornic dibilitating disease where the immune system becomes hyperactive and attacks the bodys tissues. The type of Lupus I have is drug induced through longterm medication. Minocycline is known to cause Lupus, but as yet I haven't heard mention of Roaccutane in the information. If you have used Roaccutane or Minocycline and have Lupus, or if you have expirienced symtoms like those mentioned at, I would appreciate a reply post. If you have like symptoms, please don't assume you have a disease or disorder - see a GP and get a referal to a rhumourtologist. Thanx for your time.
Posted by: KatieCakes

Re: Accutane - 07/24/02 03:10 PM

I am gonna stop responding to this post but this is my last little spurt of info. The doctors at THE CONFERENCE told Jordan it would be a good idea...its ot like they don't know the possible side effects...and I dont know if it would work as well for CIE as lamellar but obviously the Doctors thought it was worth it. Just because I am almost 18 doesn't mean that I am a kid who is obsessed with appearance..this is not about my image and where I need to find acceptance "within" myself...that makes me sound like a self centered kid. Its about FEELING better...and I am not disregarding the fact that Keith and Pauline had problems with it..but yo seem to be disregarding the fact that I didn't and I've been on it for years. You cannot bombard Jordans mom with everything under the sun that could happen...yes she needs info and to be aware of the side effects but that doesnt mean just because something is risky you shouldnt take a chance...they will find out if its right for Jordan before they put her on it I am sure...but me and my friend Laura Ashton at the conference have been on it for awhile and we have neverhad any problems. Because my skin used to be so uncomfortable is the reason I love my accutane and because it makes me look lets get that straight. Just like we always say at the conference..different things work for different people...even if they have the same type of ichthyosis. So lets inform Robin without trying to brainwash her into thinking that Accutane is some drug from hell that only hurts people. And I do think it is a good idea to let Jordan decid when she is 18 if you do not feel now is the time...because maybe she should be the one to decide if its for her...if shes willing to take "the huge" risk of going on Accutane. Alright I'm leaving I'm not gonna try to defend my Accutane anymore..but for me it is the essential step in taking care of my skin and I'd be in alot more discomfort if I had never taken the plunge and tested it.
Posted by: Robin

Re: Accutane - 07/24/02 04:41 PM

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 thank you all for the tremendous amount of has given me alot to think about.
Posted by: Anonymous

Re: Accutane - 07/25/02 12:50 PM

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][/img]
Posted by: KatieCakes

Re: Accutane - 07/25/02 05:49 PM

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 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 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 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 have your beliefs and I have mine.

Posted by: Robin

Re: Accutane - 07/25/02 07:36 PM

Tatiana...thank you soo much for what you said...I desperately wanted to diffuse the argument but didn't know how to go about 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'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.
Posted by: Laura Phillips

Re: Accutane - 07/25/02 11:29 PM


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: 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),

Posted by: Anonymous

Re: Accutane - 07/26/02 01:05 AM

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.
Posted by: Laura Phillips

Re: Accutane - 07/26/02 02:41 AM

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.
Posted by: Les Avakian

Re: Accutane - 07/26/02 04:05 AM

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
Posted by: Anonymous

Re: Accutane - 07/26/02 12:53 PM

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?
Posted by: Beth Engerman

Re: Accutane - 07/26/02 04:59 PM

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.

"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela
Posted by: pauline5

Re: Accutane - 07/27/02 01:02 AM

Firstly, although I have previously aired my reservations, I ultimately agree wholeheartedly with what Tatania and Beth have had to say.

Now for Keith's last post.....I personally feel that it is would be an agonising decision for people to make once they have a choice as to the type of child they bare.

And even worse for a person who already has ichthyosis, as you already know what it is like firsthand, so the decision should be easier in one respect but more agonising in another respect.....As deciding to abort or select a 'perfect' embryo, MAY mean we are placing a negative value on our own lives, or some may view this as being unselfish, and thinking of the unborn child's lifelong physical pain and societal prejudice.....

I decided against having children many years ago, (partly made for me) and have felt guilty about this ever since, even though it was partly based on physical limitations.

Again like the accutane debate, the topic of having children with icthyosis is an INDIVIDUAL CHOICE, and it doesn't matter if outside people oppose it....

Posted by: dslacker

Re: Accutane - 07/27/02 03:20 AM

Im not going into all this stuf about Soriatane/acutane etc - suffice it to say that I have chosen against retinoids, since I know the way my body reacts in its present condition, and not how it would react to (over)doses of retinoids. (My history being that I (who has EHK) was briefly forced into Tigazonat the age of 14, and then stopped by my own accord...)

The following is potentially very controversial to some, and is my oppinion!!!
Evolutionary deadends ???

However I found Keith's opening on the discussion on IVF screening interessting.
This is a potentially highly controversial issue, since it borders on everything from religion to individual freedom and possibly the future of our ever evolving species ;-)

Personally Im not into religion, so thats not the issue for me, but I honestly dont like the way that society is evolving into a place where we should all look/think/act/buy/etc/etc the same, which this idea ultimately is a sign of.

On the other hand I DO think that the only solution to speeding up evolution is genetic engineering - wether or not this is desireble is a whole other matter...
So my position is really grey matter here, which is probably a good idea since I dont have a girlfriend/wife. Still, these are questions that I have toyed around, and my thinking is maybe better clarified be some points:

Some of the problems of the parents:
1) Should parents with a potential for children with genetic problems have IVF screening to choose the "most" healthy egg ? or is it actually more in societies interest that they abort ?
2) Should or shouldnt parents have a child thats been fetus diagnosed with a genetic disease ?
3) When baby is born and diagnosed with a disease, then how far should one go in the treatment ?

Doctors /Geneticists problem

1) How far should one go to the "make" the perfect babies that most parents want ?
2) It is much cheaper to induce/force a miscarige on a "diseased" fetus...
3) How bad should a genetic "flaw" be before its something you take into account or "fix"(eg several countries want as few females as possible...)
4) What do the species loose by the potential simplification of the genome, when you fix or remove mutations ?
5) What do the species gain by the potential complication of the genome, if you fix or make new mutations ?

Societies problem (which doesnt coincide with the rest):
1) Who is to pay for what?!

There is no doubt in my mind that IF you fix various genetic disorders without serious sideeffects (BIG "?") then Im all for it. It should however ONLY be with the individuals acceptance of the treatment.
Already here you got a serious problem sine most doctors/geneticists would prefer to treat/fix as early as possible (hence the interest in IVF screening). Ergo the individual in question wont get a say in the matter...

Then there is the matter of wether we in the future even get to decide on this. Recently there was a case in Britain where a married couple of dwarfs had to go to court because they wanted IVF screening to make SURE that their own child would also be a dwarf! Doctors was heavily against, since dwarfism is recognised as a serious illness.

We in the Ichthyosis "community" would most certainly face most of these issues, and I (and Keith/Pauline) have hopefully opened a little discussion on this.

The Danish Slacker
"Have you got the will to be weird"
Posted by: Glori

Re: Accutane - 07/29/02 09:05 PM

I know a lot of people taking many of the drugs mentioned in this thread, some with good results, some bad, some utterly disasterous.
As I have mentioned before, I decided not to go on these drugs because I was scared (yes I am chicken!) of the side-effects and the length of time to get it out of your system. My dermatologist, who was on the ground floor of the clinical trials for all of these drugs, says five years is the minimum amount of time anyone should wait after taking drugs like Accutane and Soriatane.
My real point here is the fact that the biggest decision-maker for me was last year when I was informed that if I took Accutane or Soriatane even once, I would no longer be allowed to donate blood. While I find blood donation to be very important and I have done so every three months for over 12 years, I found it very telling that once these drugs enter your system, your blood is considered "untouchable".
If I wasn't a big coward before, I am now!
Posted by: pauline5

Re: Accutane - 07/29/02 10:26 PM


What you have just told us now, is truly amazing.....That makes it even more scary now to think of how powerful these drugs really are.....I am in shock....

Like I said before, it is so cruel that these miraculous drugs on the one hand can cause such devastating side effects on the other......It is so understandable why young people in particular would welcome a drug which can eleviate stiffness, discomfort and embarrassment during the most important active and social times of their lives....

I just welcome the day when some alternative drugs come onto the market which are not Vitamin A derivatives.

One FINAL suggestion from me for Robin and her daughter....if they decide to give the Accutane a go.......Perhaps they should wait until Jordan is a little older, giving her bones time to reach their bone mass potential. I was informed by my general practitioner that bone mass peaks at around age 24 (could be as late as 30) and that being on Tigason between Age 14 and 23yrs, may have contributed to my osteoporosis now.....together of course with the fact that I couldn't exercise during those years either....

I realise that this suggestion defeats the purpose of wishing to trial these drugs during teenagehood....It is just my answer to not discounting it all together if desired, but still PERHAPS minimising the longterm skeletal affects.....


Regards Pauline.
Posted by: sofia

Re: Accutane - 08/01/02 06:11 AM

Dear Robin,
I may be late in responding before you and jordan could make the decision about accutane. A couple of things to remember it's your choice, you must do all the testing such as blood work, bone density test and liver testing to make sure all is normal. I can tell you my skin looked great with the accutane. However, after about 1 1/2 on the medication i began having problems with my eyes eventually i developed painful corneal abrasions due to the severe dryness in my eyes. I have been off accutane for almost 3 years and still i suffer with my eyes. This is what I endured on the medication. I don't think I will be using accutane again. I am now hooked on lachydrin and peanut oil. I can tell you that my skin looked for about 2-3 months horrible and was so dry after i stopped the medication. It is up to you but if i was in your shoes i would look into it even more. I too have CIE and if i could go back and make that decision again i would have never decided in taking this.

Posted by: Lisa Marie

Re: Accutane - 08/05/02 11:58 AM

I am interested in what your doctor told you about the time needed to be off Accutane.
This stuff is so hard to figure out. I have been told so many different things. I am now 30, will be getting married in 9 months and planned on going off Accutane (it will then be 15 years on the medicine with no time off) for good right after my honeymoon in order to detox for children. I thought two years would be enough. Five years you say. I will have to wait a reasonable time and definitely need to speake to my doctor. Do you have any more information to give on what you were told?
Posted by: Glori

Re: Accutane - 08/13/02 05:13 AM

One of the threads in here where we discussed Accutane and Soriatane points out the fact that the web site run by Roche had been edited and the amount of time to wait for pregnancy reduced. Roche's own web site now says that when you take Accutane, you need only wait one month, which absolutely stuns me. For years the waiting period was several years. The waiting period for Soriatane is three years, which is another surprise, that the waiting periods are so different for two drugs that are not all that dissimiliar (IN MY OPINION).
When it comes to blood donation, the Red Cross' position is: wait three years after taking Soriatane, four weeks after taking Accutane and you cannot donate at all after taking Tegison. I donated blood through Carter Bloodcare in Dallas and they won't take your blood at all if you have taken any of these drugs. The Red Cross has, and I hesitate to use this word, lower standards than most private donation groups. I don't mean that in a bad way, it's just that their waiting periods for everything are lower than anyone else's.
Just for fun, I ran a query over the Internet and learned that most other blood banks won't accept your blood at all if you have ever taken these drugs and an article printed by the National Institute of Arthritis and Musculoskeletal and Skin Diseases Information insists that their patients wait three years after taking any of these drugs before getting pregnant.
As for my experience with my doctor, I was invited to join the clinical trials for Accutane in 1982(?) and I was asked to sign a "legally binding" agreement stating that I would immediately abort if I were to become pregnant during the trial or within five years of stopping the drug. My last contact with that doctor, who was with the University of Michigan and considered a leading Ichthyosis expert at the time, was about ten years ago and he told me that research had not yet shown to him that waiting less than five years was acceptable. Obviously, in terms of research, ten years is a long time but it wasn't that long ago, last year in fact, that the Roche page still advised a much longer waiting period than they do now.
So I don't know what we've learned today, except that I have too much time on my hands [img][/img]

[This message has been edited by Glori (edited August 13, 2002).]