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The Accutane Decision - I Want Your Input, If You'll Read

 
MemberMember
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(@mes6890)

Posted : 10/02/2011 12:14 am

My skin is on a mission to positively destroy itself it feels like, I swear it's never been this bad. I know the Epiduo I was using made the scarring worse. I do believe BP worsens scars, so that was stupid of me, but I mean I used it as directed. Agh. So frustrated.

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(@mm97)

Posted : 10/02/2011 8:41 am

The amount of people who seem to get side effects later on, out of nowhere - Why does that happen?

I'm 21 and have a few grey hairs now. Why? My Dad got his grey hairs in his late 30's. I know it's the accutane, but why does that happen?

 

Hey, have you been tested for anemia? Anemia can cause premature grey hairs. I don't believe Accutane can. I haven't been on Accutane myself and I got my first grey hair when I was 17 (!), went for tests and found out I was anemic. It also causes a ton of other symptoms, like chronic fatigue and delayed wound healing... and it's curable. Something to consider, maybe?

My skin is on a mission to positively destroy itself it feels like, I swear it's never been this bad. I know the Epiduo I was using made the scarring worse. I do believe BP worsens scars, so that was stupid of me, but I mean I used it as directed. Agh. So frustrated.

 

I can relate to so much of what you said... I'm amazed at how long my red marks stick around now, whereas before I turned 20 they faded within a matter of days... I also think I'm starting to scar. :( And I don't understand why my skin seems to actually get worse with age. I'm looking into going on Accutane as well, so I want to know how it goes for you! I really hope it works out.

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MemberMember
39
(@mes6890)

Posted : 10/03/2011 1:16 am

The amount of people who seem to get side effects later on, out of nowhere - Why does that happen?

I'm 21 and have a few grey hairs now. Why? My Dad got his grey hairs in his late 30's. I know it's the accutane, but why does that happen?

 

Hey, have you been tested for anemia? Anemia can cause premature grey hairs. I don't believe Accutane can. I haven't been on Accutane myself and I got my first grey hair when I was 17 (!), went for tests and found out I was anemic. It also causes a ton of other symptoms, like chronic fatigue and delayed wound healing... and it's curable. Something to consider, maybe?

My skin is on a mission to positively destroy itself it feels like, I swear it's never been this bad. I know the Epiduo I was using made the scarring worse. I do believe BP worsens scars, so that was stupid of me, but I mean I used it as directed. Agh. So frustrated.

 

I can relate to so much of what you said... I'm amazed at how long my red marks stick around now, whereas before I turned 20 they faded within a matter of days... I also think I'm starting to scar. sad.png And I don't understand why my skin seems to actually get worse with age. I'm looking into going on Accutane as well, so I want to know how it goes for you! I really hope it works out.

 

A dermatologist told me that just like the rest of our body, our skin has a metabolism, and that slows down like our regular metabolism as we get older. FUN!

I'll definitely let you all know how it goes. I should start in mid November. I am pretty scared, but I know I need to do this. I'm unhappy. And really, I've always had a high enough threshold for what I'll tolerate acne-wise. I've generally been able to suck it up or "put it in perspective." But I look like I've had a serious brush with poison ivy on all of my jawline. All the time. I've never had as much cystic acne as now. And cystic acne is downright uncomfortable.

I really didn't think I'd get to this point once I had my skin so clear with the light therapy. I thought I was done with this forever.

I've put up with a lot, but I had to get to this point to know that Accutane is something I want to do. (Want...ha...you know) And that's because of instances like Stef's, which is a terrifying prospect, even if such dramatic side effects are statistically unlikely. Regardless of how my treatment goes, I will not get on here afterward and generalize my experience to the entire population. You can't know how it's going to go for a certain individual. All I can do is enter this with a positive attitude. I'll update some for sure, but I don't want to fixate too too much once I'm on it.

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(@lesmandarinnes)

Posted : 10/04/2011 5:16 pm

Good luck... I had pretty much your same condition, perhaps a bit worse. I wore makeup over it, which didn't help-- but I suspect you don't like to leave the house without it as much as I didn't, at the time. :)

In any case-- it was awful. Currently, my skin is immaculate.

But truth is, I wish I'd never done it. I'd take back my acne any day if it meant I could have avoided the spinal tap and epidural blood patch, EMGs, C/Ts, MRIs, blood workups, etc etc etc.... all to find a nonexistent diagnosis for brain fog.

Since 9/5/11 I haven't had a clear head. I have dizzy spells, occasional anxiety, tinnitus.... I had to withdraw from my university this semester. I'm at home visiting doctors instead.

Please be alert. My symptoms did not begin until the fifth month. Accutane, Claravis, Amnesteem, whatever other form of isotretinoin, accumulates in your body. It is a version of chemotherapy that is reserved as a "backup" plan for cancer patients. Those with less invasive, more difficult cases (such that you cannot simply "extract" a tumor, ie lymphoma or glial blastoma).

Isotretinoin works as a cellular reprogrammer, propagating cellular apoptosis. That is, programmed "cell death." Each cell in your body has a lifespan dictated by chromosomal telomere length. That is, the length of "tails" of the chromosomes. When these tails are gone (decrease over time, due to disease, or simply replication), cell death occurs. Isotretinoin does not pull punches or choose its cellular victims. I'm not a neuroscientist, but I am (well, was) studying neurology at school. For more info, or to do your own research, search for terms such as, "isotretinoin" and "telomere" or "Hayflick's limit" together. Also, research possible side-effects such as "brain fog" or "IBS." Those are very possible. I am extremely healthy-- weight, height, hygiene, blood, muscle, neurology, etc etc, but suffer from both.

All in all, please reconsider the price you may pay with your health. Acne is terrible, I agree.

But you have the right to information that dermatologists simply do not know or are not providing (whether that is out of ignorance or misinformation).

A doctor is a human being-- and like anyone else, will follow trails of mass information before doing research. Otherwise, they wouldn't be doctors-- they'd be researchers. You've just got to be your own advocate and make informed decisions. My answer is "don't do it," but I highly encourage you to make this call on your own, having researched information for yourself. Asking people on a forum is unlikely to yield scientific answers when they matter. Good luck.

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MemberMember
39
(@mes6890)

Posted : 10/06/2011 12:15 pm

Wow, I am so sorry to hear about your experience lesmandarinnes. Thanks for taking the time to tell me about all this.

I can't imagine having to take off from school because of Accutane.

I can't remember the last time I had to make such a hard decision as this one, but after a lot of consideration, I am going to do it. I am scared of how it could affect my life, and no matter how many friends tell me I don't need to be so afraid, I know it's serious. But at the same time, as much as I wish I had the confidence to get past the way my face and chest look and carry on as usual, I can't. I'm not fully living my life right now, and not until the past 6 months has acne interfered so drastically and consistently with my quality of life. That's pretty serious too I think. I've been invited to go out tomorrow night and Saturday night. I'm like "yeah that sounds fun" all the while knowing full well that I will be in my apartment studying this weekend.

I have utilized internet research beyond acne.org to learn more about isotretinoin...again, scary. It's why I've waited until the last possible moment! Like you, aside from the stupid acne, I am an otherwise healthy young woman. Potentially jeopardizing that isn't something I've taken lightly.

But I just can't go on like this :(

What dosage were you taking, by the way?

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(@lesmandarinnes)

Posted : 10/06/2011 10:54 pm

They started me on 40 mg, which I took for three months. My last two months were a 60 mg dose, with 40/80mg alterations. (One day I'd take one pill, next I'd take two, then one... and so forth.)

 

I'd recommend starting on a low dose. Looking at your pics again, mine was definitely worse than yours. It did leave some scarring, but it's not very noticeable. In any case, if you're gonna do it, please just be sure you have a doc that will be willing to work with you if things go wrong... but more importantly, I'd suggest keeping a log and paying very close attention to your symptoms. Mine began with irritability at month 2, fatigue at month 3, then total cluster**** approaching month five. Didn't finish the course-- but apparently, I didn't need to! Others have had better experiences, so I hope your experience is akin to theirs, not mine. Keep a watchful eye and consult your derm at the first shot. I didn't cause I wanted clear skin. :/ But just remember -- most people would agree that Accutane works after their course, too. So it's better to take less, I think.

Best of luck! Stay healthy. PM me if you have more q's.

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MemberMember
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(@mes6890)

Posted : 10/07/2011 10:46 pm

lesmandarinnes - you raise a good point about closely monitoring everything, definitely plan on it. && that's essentially what my parents said...not to deny any real symptoms if they develop

alexwysocki - No one is forcing isotretinoin down your throat. If you haven't found a satisfactory dermatologist, which honestly isn't uncommon in my opinion, try another one. It's a pain, but a lot of us have shopped around. It's not that all dermatologists are bad, but that not all dermatologists really consider acne as serious as the other things they see in patients. Also, A LOT of people take Accutane without incurring ruinous side effects, and it's quite possible that in your derm's experience prescribing it, the results have been extremely good. And finally yes, some dermatologists are ridiculously fast. I found a derm who's really really experienced and aggressive in treating acne and doesn't speed through my appointment like the others I've had. I found him via a referral from a reputable plastic surgeon/spa house in my city. Ha, even my acne-free mom is going to switch to him - she's still at my old derm, bless her heart. Oh Dr. Hayden.. but anyway. So I'm choosing to do the Accutane with this derm. Plus, I've done a good deal of research on it myself.

The chance for the most serious side effects to occur are statistically unlikely but they are definitely serious and possible as evidenced by some of the responses to my query here. You just have to decide.

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(@nicko83)

Posted : 10/08/2011 3:18 am

out of all the acne treatments I tried, accutane was hands down the best but also had the riskiest side effects. What I was more worried about was the psychiatric side effects- depression and psychosis. I was on it for 16 months approx at 20 mg daily. Week 2, the acne was gone and the drug makes your pores shrink and your skin smooth and soft looking.

The side effects I got were mostly dry lips and nasal passages. I also got sore easily when exercising.

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MemberMember
39
(@mes6890)

Posted : 07/23/2013 5:18 pm

I just found this year+ old thread and thought I'd follow up. I ended up getting cold feet on Accutane in 2011. The acne hasn't gone away consistently, and I actually tried it several weeks ago for a short time and it was terrifying how quickly my mood plummeted. I am still trying to get my head around how fast it happened. Disclaimer: I have a history of mild depression. I live at home for now, and my parents, despite their firsthand knowledge of my struggles with acne, were disconcerted as I was crying and crying and asked that I stop taking it.

Sure, part of this was colored by all of my nerves about this drug. But the fast train to depression was real. Ever been on one of those fast trains in Europe? It was like that. I just felt like I was in a twilight zone at home and at work. I came home from work early twice because I was about to burst into tears at my desk.

Also, I can't believe how rapidly my hair began falling out. I know a lot of people barrel through these sides, but having regretfully taken another substance before, I couldn't keep going. It has been almost a week since I took my last pill, and things are getting a little better. I don't think most people experience the psychological effects I got.

It is worth noting that despite some flushing, my skin was looking good - and fast. What a SAGA.

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