Hey Chandra,

There's a little bit of information on Accutane on another section of the website; I don't know if you've seen that yet or not.
http://www.ichthyosis.com/retinoid.htm

For me personally, Accutane is the only retinoid I've taken. I took Accutane, off and on, for 17 years. To the best of my knowledge, I do not have any bone changes as a result of taking Accutane. However, as I get older, I get more concerned about bone changes...and the potential risk for bone changes at this time outweighs the benefits of taking Accutane for me. I'm able to control my skin well enough with just topical creams and other stuff.

Accutane definitely increased the elasticity of my skin. I LOVED it. Chris, on the other hand, thought I felt like a rubber chicken (his words, not mine!) He thought it felt odd...it was definitely more elastic, but in an unnatural way to him. He prefers my skin when it's drier and less elastic, but off Accutane. Seeing as Chris is the person, besides myself, who spends the most time with my body, this did also factor heavily into my decision not to use Accutane right now.

I re-evaluate whether to use Accutane or not periodically. It was a godsend for 17 years of my life. If you're going to take it or any other retinoid, educate yourself as much as possible about the potential risks and rewards, and then decide for yourself whether it's the way to go for you or not.

Retinoids definitely have risks--that's why their use is still kind of controversial for people with ichthyosis (unlike people who take Accutane for severe acne, people with ichthyosis generally need to take much higher doses for much more extended periods of time...under those circumstances, people with ichthyosis have a higher likelihood of seeing serious side effects than people who take Accutane for acne. So, keep that in mind when reading up about Accutane--a lot of the information you'll find is targeted at people who will be taking it for acne).

Back to your question about benefits though--the ectropion around my eyes was dramatically reduced (my eyes looked as close to 'normal' as they ever did, and came closer to closing at night when I slept). Skin was definitely thinner. I personally found though that when I would get a cut or a scrape, it would take longer to heal when I was on Accutane than when I was off (and frequently actually get worse before it got better). MUCH easier to keep myself moist and comfortable. MUCH reduced shedding...didn't leave a trail of scales everywhere I went.

Benefits were significant. Significant enough, that during constant re-evaluation and re-challenging risks vs. rewards, I decided for the better part of 17 years to take Accutane (the off and on part was due to drug holidays...something else to discuss with your doctor. There's some thinking that if you can take a 'holiday' off retinoids--several months--that you reduce your chances of being affected by serious side effects, namely bone changes).

Hoi! That was a lot (and still only touches the tip of the iceberg in terms of my experiences with Accutane). Hope at least some of that was responsive to your question. Please let me know if you have other questions, or other aspects of my experience on which you'd like me to expand.

Laura