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#1118 - 07/23/02 02:12 PM Accutane
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
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?

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#1119 - 07/23/02 03:43 PM Re: Accutane
KatieCakes Offline
Member

Registered: 05/05/02
Posts: 118
Loc: Boston & South Attleboro, MA, ...
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 me...my 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 two...so 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!

Katie

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#1120 - 07/23/02 06:57 PM Re: Accutane
kevin246 Offline
Member

Registered: 05/31/01
Posts: 20
Loc: Tennessee (USA)
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!

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#1121 - 07/23/02 08:41 PM Re: Accutane
KatieCakes Offline
Member

Registered: 05/05/02
Posts: 118
Loc: Boston & South Attleboro, MA, ...
Yes I am a teen and yes my appearance is important to me but so is feeling comfortable..like 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.

Katie

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#1122 - 07/24/02 12:38 AM Re: Accutane
Anonymous
Unregistered


Robin,
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.
Keith.

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#1123 - 07/24/02 04:08 AM Re: Accutane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
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 track......so 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.

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#1124 - 07/24/02 12:52 PM Re: Accutane
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
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.

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#1125 - 07/24/02 01:30 PM Re: Accutane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
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 them....it is so cruel and I feel that drugs shouldn't be released onto the market (giving people false hope) when these effects exists.

Pauline.

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#1126 - 07/24/02 02:27 PM Re: Accutane
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
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.

PLEASE TAKE A MOMENT TO READ THIS
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 www.lupus.org.uk/www.uklupus.co.uk, 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.

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#1127 - 07/24/02 03:10 PM Re: Accutane
KatieCakes Offline
Member

Registered: 05/05/02
Posts: 118
Loc: Boston & South Attleboro, MA, ...
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 better..so 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.

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