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Published Research And Studies On Side Effects

MemberMember
1
(@willg)

Posted : 03/26/2014 3:07 pm

Hello :)

My question: Please can you post any published papers and studies on the side effects of Accutane? Preferably those that are most trustworthy and respected.

I am asking because I would like to assess the numbers of incidences of side effects for myself. I'm 27-years-old and have been on Accutane for one week, having resisted for 10 years - I was waiting for my acne to clear up, and it didn't.

The short-term effects do not bother me. However, some of the stories I've read of long-term effects (dry skin and eyes persisting permanently; digestive problems; bowel problems; liver and kidney problems) are worrying. I'm also concerned about psychological effects.

My dermatologist dismissed the risk of these long-term side effects as negligible, and I would say was even irritated by what he saw as "another patient with misconceptions about Accutane". There seem to be far too many horror stories on here for it to be just misconceptions, so I would like to assess the evidence myself.

Thanks in advance

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MemberMember
160
(@megtree)

Posted : 03/26/2014 4:54 pm

Google Scholar is a helpful tool to find abstracts. Here is one by the Journal of the American Academy of Dermatology titled "Analysis of Common Side Effects of Isotretinoin"

http://www.sciencedirect.com/science/article/pii/S0190962201025907?via=ihub

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MemberMember
1
(@willg)

Posted : 03/26/2014 8:28 pm

Google Scholar is a helpful tool to find abstracts. Here is one by the Journal of the American Academy of Dermatology titled "Analysis of Common Side Effects of Isotretinoin"

http://www.sciencedirect.com/science/article/pii/S0190962201025907?via=ihub

Thanks

For those interested, this is the only publicly-available paper I've found so far: http://www.calidaddeinformacioncfr.com/isoface/Prospective_Study_Risk_Factors_Relapse_after_Treatment_Acne_Oral_Isotretinoin.pdf

Only 52 people in the study, but it has some interesting numbers on relapse rates and side effects.

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MemberMember
1
(@willg)

Posted : 03/26/2014 8:52 pm

According to the univariate model, factors likely to increase significantly the risk of relapse were a high number of retentional lesions before and after treatment, a high number of superficial inflammatory lesions and an important seborrhoea after treatment, young age when acne appeared or when isotretinoin was initiated, acne on both the face and the body, prepubertal acne as well as a close family history of acne (father and/or mother; table 4 ). On the other hand, no significant difference was shown regarding gender, daily dose of isotretinoin, treatment duration, cumulative dose or seborrhoea before treatment ( table 4 ).

I found this interesting. It seems to be stated as common knowledge on here that the cumulative dose is important to relapse rate, but this study suggests otherwise.

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MemberMember
160
(@megtree)

Posted : 03/28/2014 4:18 pm

According to the univariate model, factors likely to increase significantly the risk of relapse were a high number of retentional lesions before and after treatment, a high number of superficial inflammatory lesions and an important seborrhoea after treatment, young age when acne appeared or when isotretinoin was initiated, acne on both the face and the body, prepubertal acne as well as a close family history of acne (father and/or mother; table 4 ). On the other hand, no significant difference was shown regarding gender, daily dose of isotretinoin, treatment duration, cumulative dose or seborrhoea before treatment ( table 4 ).

I found this interesting. It seems to be stated as common knowledge on here that the cumulative dose is important to relapse rate, but this study suggests otherwise.

This article is very interesting! However, it does not suggest that cumulative dose is not important to relapse rate. As pointed out by the authors in the discussion section (Pg. 176, 1st paragraph), one would not expect to find an effect of cumulative dosage on relapse rate for participants receiving a cumulative dose above the minimum cumulative dose above 120mg/kg.

Based on previous literature, the relationship between cumulative dose and relapse rate is not linearly negative, it is curvilinear. Lowered rates of relapse are only noted with increased cum. dosage until the 120mg - 150mg/kg threshold is reached, then these effects taper off. Since all but one of the participants in this study received higher than the minimum cumulative dose, there is a restriction of range problem, and it stands to reason that cumulative dose and relapse rate are unrelated in this sample.

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MemberMember
54
(@kim28)

Posted : 03/29/2014 4:04 pm

 

I got caught up in the hype that high cumulative doses are better. There is one article that constantly gets quoted, I can't remember who it's by, but they have people taking doses up to 220. I've read it, and it has some issues which the authors bring up, but everyone else ignores.

I asked my derm about my cumulative dose out of this fear, and she said the high dose research is not great, the side effects are increased quite a lot, and it is just a lot of 'more is always better' hype. I tend to agree, but I will go a bit over 120 to stay safe.

There are a few interesting studies out there on low, long term dosing, where it looks promising that suppressing your sebaceaous gland for longer, instead of with more, could help people who relapse after an initial 'regular' course. This research is slow going, though. I relapsed after 9 years, so I don't qualify for any research, as subjects are usually followed for 2 years at the maximum. Relapse rates are underrated, especially among women, as are side effect rates.

I suffer from permanent partial night blindness from my first course 10 years ago. And I will take that over cystic acne any day of the week. If I tell my derm about this, she might hesitate to prescribe me this drug which has saved my life. I am willing to bet there are lots of people with lots of side effects that do this exact same thing. Even the ones in the studies.

My feeling is that accutane is both risky and highly rewarding. This is common knowledge. There are some cases of acne that are worth that risk, and one has to make that decision for themselves.

Best of luck.

 

 

And I love your study. It basically says that the people who relapse the most are the people who's acne is really, really bad, and it doesn't clear up entirely, even on accutane. So if you're really bad off, and the drug didn't really work, then the drug probably won't work. Shocker.

:)

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MemberMember
1
(@willg)

Posted : 03/29/2014 6:54 pm

According to the univariate model, factors likely to increase significantly the risk of relapse were a high number of retentional lesions before and after treatment, a high number of superficial inflammatory lesions and an important seborrhoea after treatment, young age when acne appeared or when isotretinoin was initiated, acne on both the face and the body, prepubertal acne as well as a close family history of acne (father and/or mother; table 4 ). On the other hand, no significant difference was shown regarding gender, daily dose of isotretinoin, treatment duration, cumulative dose or seborrhoea before treatment ( table 4 ).

I found this interesting. It seems to be stated as common knowledge on here that the cumulative dose is important to relapse rate, but this study suggests otherwise.

This article is very interesting! However, it does not suggest that cumulative dose is not important to relapse rate. As pointed out by the authors in the discussion section (Pg. 176, 1st paragraph), one would not expect to find an effect of cumulative dosage on relapse rate for participants receiving a cumulative dose above the minimum cumulative dose above 120mg/kg.

Based on previous literature, the relationship between cumulative dose and relapse rate is not linearly negative, it is curvilinear. Lowered rates of relapse are only noted with increased cum. dosage until the 120mg - 150mg/kg threshold is reached, then these effects taper off. Since all but one of the participants in this study received higher than the minimum cumulative dose, there is a restriction of range problem, and it stands to reason that cumulative dose and relapse rate are unrelated in this sample.

Thanks for the reply :)

You are correct. I did realise when reading the study that all participants had received at least 108mg/kg cumulative dose, and therefore the study only shows there is no significant link to relapse rate beyond that dose. I should have stated that explicitly in my comment.

However, as I've seen on forums such as this, the common understanding is not that there's no effect on relapse rate beyond on 120mg/kg. I regularly see people recommending that people push their dermatologist for an extra month or two of treatment to take them up to 160 or even 180mg/kg, just to "be safe".

I suffer from permanent partial night blindness from my first course 10 years ago. And I will take that over cystic acne any day of the week. If I tell my derm about this, she might hesitate to prescribe me this drug which has saved my life. I am willing to bet there are lots of people with lots of side effects that do this exact same thing. Even the ones in the studies.

My feeling is that accutane is both risky and highly rewarding. This is common knowledge. There are some cases of acne that are worth that risk, and one has to make that decision for themselves.

Best of luck.

Heya smile.png

I agree. It's all about risk/reward. In most cases, it's best for the patient to decide, based on what they value most. However, this is the only the case if the patient has the cognitive ability to understand the risks and probabilities involved, and is mentally sound enough to make such a decision. So I fully understand why dermatologists have to be so cautious.

I find it interesting that you say your side effects were worth it. Could you tell me a bit more? Was your relapse recently and are you now back on accutane for a second time?

I've had to make that same risk/reward judgement myself. I'm 27 and have had terrible cystic acne now for about 13 years. I turned down accutane as a teenager because there is some history of mental illness (paranoid schizophrenia, so quite serious) in my immediate family. I thought it wasn't worth the risks. I thought that was quite a mature decision for a teenager, yet whenever I go to a dermatologist, they look at me like I'm crazy. They can't understand why I've put myself through it. Now I've gone on accutane because the risks are lower (I'm past the age where you're at high risk for developing schizophrenia), and it's now obvious that the acne isn't going away, whereas when I was 16, it could have gone away by itself, like it did with my brothers.

And I love your study. It basically says that the people who relapse the most are the people who's acne is really, really bad, and it doesn't clear up entirely, even on accutane. So if you're really bad off, and the drug didn't really work, then the drug probably won't work. Shocker.

smile.png

I'm not sure if you're being sarcastic! But even though the results might seem obvious, I think it's still important to prove them. I have most of the high-risk factors that the study demonstrates increases relapse rate, so I know now that i'm likely to relapse. And yet when I asked my dermatologist about that, he said the chance of relapse is very low. Without such an obvious study, I would have believed him.

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MemberMember
54
(@kim28)

Posted : 03/29/2014 9:09 pm

The permanent side effect that I have is that it takes my eyes longer to adjust when it is dark. So if we walked into a dark room, you would be able to see fairly well in a few seconds, but it takes me a couple minutes for my eyes to 'adjust'. I noticed this during my first course and assumed it would go away eventually. It never did, and I don't really care. I suffered from cystic acne on the lower portion of my face before I did a course at age 26. Between the ages of 21 and 26 it was bad enough that I was always in pain. This was far worse than the ocular issues I have now.

I thought I was a lucky no-relapser until I went off the pill a while ago. It took a good year, but my acne crept back, and I think it is likely that it would have come back sooner if I had not been on an androgen blocking BCP for the nine years I stayed clear post-accutane. Hormonal acne is a bitch, which is why women tend to experience relapses more than men.

I am currently taking a second course. My acne returned full force in September/October of last year. I got myself back on accutane in November. I had pretty severe depression issues related to my acne, and I refuse to go through that again when I know there is something that can help me. It completely changed my life the first time, and I will hold onto that new life kicking and screaming. I refuse to go back to that dark place, which was metaphorically much darker than any night blindness I have now. I hope that makes sense.

And sorry for the sarcasm. Sometimes this forum can be a bit frustrating with all the pseudo-research that goes on, and people completely ignore the obvious. I have really enjoyed your conversation here because it is so incredibly level headed.

My derm and I have agreed that if I relapse after this course, we will try a long term, low dose course. However, the odds are relatively in my favour since I had some success the first time. It still helps my peace of mind to know there are options out there for those of us who relapse.

And I have a brother with a schizoid disorder, but have had no such side effects. I'm sure it's possible, but certainly not unavoidable.

I think you will be happy with your choice.

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