Decreasing Accuatane

Posted by: Lisa Marie

Decreasing Accuatane - 06/15/01 10:40 AM

I am trying to decrease the amount of Accutane I am taking and hope to completely go off it. What I am finding is that my skin is a lot worse than I remember it being when I wasn't taking Accutane at all. It has been 13 years. Will my skin ever be the way it was before the Accutane? I remember it being mostly red, but not super flakey (I have CIE). Does anyone who has been on Accutane for a long time have any advice? I'm thinking about increasing my dose again so I'm more comfortable. Thanks for your help.
Posted by: Laura Phillips

Re: Decreasing Accuatane - 06/15/01 02:50 PM

Hi Lisa,

Tough decisions you're trying to make. Hopefully hearing some thoughts from others will help. However, once you feel like you've gathered some good information to make a decision for yourself, be sure to confirm your understanding with your derm.

I have lamellar. I'm not naturally very red, but have lots of scaling.

My skin is definitely better now than when I firt started taking Accutane. I started when I was 13, and took Accutane for 14 years. However, I've heard a lot of anecdotal information about some people's ichthyosis spontaneously getting better with age. So I wonder how much of the improvement is due to Accutane, how much due to some spontaneous improvement with aging, and how much due to a better treatment program (it's all trial-and-error, and I'm constantly refining it. It's come a long way since I was 13!).

As I got older, I found that I could decrease my daily dosage of Accutane and get the same results. While I was always challenging what was the lowest dose I could take and still get satisfactory results, my derm really stressed the importance of "drug holidays," where I would stop taking Accutane altogether. He felt (and I think some others agree) that in terms of mitigating the risks (side effects) of Accutane, occasional drug holidays were even more important than continuing the drug but at a lower dose.

I got to a point where I would do 6 months on, 6 months off (of course, I usually picked the summer as the "on" months).

Have you tried any drug holidays yet? What does your derm think about this? Maybe you could try going off Accutane for a few months, and if your skin really gets worse, then go back on. That's basically how I stopped taking Accutane. It wasn't my plan--I didn't set out with a mindset that "I need to stop Accutane." I just started my usual 6 month drug holiday, and when the 6 months were up, Chris and I talked about it, and decided to wait. My skin was in pretty good shape (I wasn't *dying* to go back on Accutane like I sometimes was) and we decided that we'd just play it by ear--whenever my skin got really bad, and I needed a break, that I'd go back on Accutane. That was back in 1998, and I haven't felt like I've needed Accutane since (I know that's at least partly due to the invention and availability of PDS and Dermal Therapy).

I imagine you're probably in a similar place as I am: I'm getting older, I'm getting more risk averse. The thought of any bone changes from Accutane really bother me. I have copies of all my films, taken at least every 2 years, since age 13, and I have no discernible signs of any bone changes. However, as I got older, I definitely felt differently when I was on Accutane. If I was bending over (like to work on a horse's feet), I would have trouble (pain) straightening back up when I was on Accutane. I couldn't sit for long periods of time spectating (especially in bleechers at a sporting event, but even in theater seats) without having discomfort in my knees and my back. This was all very scary to me, and clear evidence that Accutane was doing *something* to my joints. However, all these symptoms would totally disappear shortly after going off Accutane. That's one of the reasons that the scales have tipped toward staying off for me--I can keep my skin looking and feeling "good enough" without it, and I'm more paranoid about bone changes. But if I couldn't adequately control my skin without Accutane, I'd probably still be on it today.

Hope that helps. Let me know if you have any questions about anything I've experienced.

Good luck,
Posted by: Glori

Re: Decreasing Accuatane - 07/08/01 07:48 PM

Again I am late to chime in...
I have to wonder if it's not just your skin naturally getting worse with age?
When I was a kid, I didn't have it all the way up my thighs and legs like I do now (although some of that is irritation from riding horses) and I didn't have it on my upper arms like I do now. Overall, I think my skin has worsened with age, while my father's has improved so dramatically you wouldn't know he has it at all.
So maybe it's coming back worse because of a natural progression?
Posted by: Lisa Marie

Re: Decreasing Accuatane - 07/09/01 11:02 AM

I've always had it on my entire body and what I've been told, having a mild case. I've been off Accutane for 3 weeks now and am hating every moment of it. But what I'm going through with my skin being terrible dry seems to be normal if I was on Accutane for 13/14 years with no breaks. I would think it will take some time for my body to readjust. I'm still hopefull and I guess it will be a month or so before I really get a glimps at how my body will remain. It's hard but I'm still optimistic I made the right decision.
Posted by: Laura Phillips

Re: Decreasing Accuatane - 07/09/01 02:32 PM

Lisa Marie,

I was wondering how you were doing! Yeah, going off Accutane is definitely tough. I definitely have to be more aggressive with how often I cream, and how many AHAs I use, when I'm off Accutane.

And if you find that it's just too much of a deterioration in the quality of your life, hey, you may decide to go back on Accutane. That's okay too. At least you'll have gotten some valuable information about what your skin (and your life) is like when you're not on Accutane.

I think you're taking a good approach, though, giving it at least a couple of months before making a decision.

Those six months on, six months off "holidays' were really hard for me (soo hard to make myself go off, and soo anxious to go back on). of these years they're going to come up with something better than retinoids.

Much sympathy,