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goodlife

Has anyone actually had bad side effects from Accutane/roaccutane?

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Not yet, just obvious ones - chapped lips, dry skin, maybe fatigue. I finished 3 weeks ago and skin and lips are much better now.

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One individual's anecdotal tale is not enough to demonstrate causality, and as you've harped on previously - there aren't long term studies that could quantify the occurance of particular effects - especially the bizarre effects that you mention.

What you mean is meta-analyses showing incidence rates of adverse reactions long-term in patients administered isotretinoin do not exist.

There are plenty of experimental studies which substantiate an inferential hypothesis (and I say inferential because no studies have been done on me) that my symptoms are etiologically related to secondary conditions attributable to Accutane treatment.

I have a partial list of abstracts in my signature, entitled Retinoid signaling, etc.

Let me put it as simply as I can, keeping in mind that the experimental studies quoted below are only a few of many:

1) Accutane treatment will permanently reduce 5-alpha-reductase (5-AR) activity, tissue-specific type of enzymes responsible for converting testosterone into the more potent androgen, dihydrotestosterone (DHT).[1]

2) Both 5-AR and DHT are found in the central nervous system of mammals. They play very important physiological roles, e.g. 5-AR is involved in the biochemical synthesis of GABA.[2]

3) Isotretinoin is a lipophilic retinoid that can cross into the blood brain barrier.[3][4] Isotretinoin, as well as its metabolites, primarily retinoic acid (an interconvertible isomer) and 4-oxo-isotretinoin (which is known to accumulate in the blood with repeated administration) are biologically active compounds, i.e they bind with or activate the retinoid receptors (Goodman & Gilman, 2001). Retinoid receptors and retinoid signaling are present in neurobiological systems and are implicated in neurotransmission, among other things.[5][6][7] In the presence of pharmacological doses of isotretinoin, it is speculated that receptor downregulation occurs, in addition to the dysregulation of endogenous retinoid signaling pathways, a condition implicated in depression, schizophrenia, and Alzheimer's dementia disorders.[8][9][10] Isotretinoin also interferes with normal vitamin A metabolism in vitro.[11] It is likely that long-term secondary conditions will result from this effect.

References:

[1] Boudou P et. al. Evidence for decreased androgen 5 alpha-reduction in skin and liver of men with severe acne after 13-cis-retinoic acid treatment. J Clin Endocrinol Metab. 1994 May;78(5):1064-9. [PMID: 8175961]

[2]Torres JM, Sanchez P, Ortega E. Quantitation of mRNA levels of steroid 5 alpha-reductase isoenzymes in the rat brain by "one-step" RT-PCR and capillary electrophoresis. J Neurosci Methods. 2004 Jun 15;136(1):105-10. [PMID: 15206422]

[3] Bremner JD et. al. Functional brain imaging alterations in acne patients treated with isotretinoin. Am J Psychiatry. 2005 May;162(5):983-91. [PMID: 15863802]

[4] Yang Y et. al. Determination of plasma and brain levels of isotretinoin in mice following single oral dose by high-performance liquid chromatography. J Pharm Biomed Anal. 2005 Feb 7;37(1):157-63. [PMID: 15664756]

[5] Drager UC. Retinoic acid signaling in the functioning brain. Sci STKE. 2006 Feb 28;2006(324):pe10. [PMID: 16507818]

[6] Wang HF, Liu FC. Regulation of multiple dopamine signal transduction molecules by retinoids in the developing striatum. Neuroscience. 2005;134(1):97-105. [PMID: 15939542] (see: [10])

[7] Lane MA, Bailey SJ. Role of retinoid signalling in the adult brain. Prog Neurobiol. 2005 Mar;75(4):275-93. [PMID: 15882777]

[8] ibid.

[9] Goodman AB. Three independent lines of evidence suggest retinoids as causal to schizophrenia. Proc Natl Acad Sci U S A. 1998 Jun 23;95(13):7240-4. [PMID: 9636132]

[10] Krezel W, Ghyselinck N, et. al. Impaired locomotion and dopamine signaling in retinoid receptor mutant mice. Science. 1998 Feb 6;279(5352):863-7. [PMID: 9452386]

[11] Dew SE, Wardlaw SA, Ong DE. Effects of pharmacological retinoids on several vitamin A-metabolizing enzymes. Cancer Res. 1993 Jul 1;53(13):2965-9. [PMID: 8319203]

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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btw, for me... dry nose, dry skin, dry lips, sore back when i bend over and get back up. that's it, it is minimal and manageable.

those are basically the same side effects I'm experiencing, along with scratchy throat & dry coughing

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I've been on it for a couple weeks now. The only side effects I've experienced are nose bleeds. No cracked lips, no dry skin, no muscle aches or anything.

How long should we wait to see results? I don't see any improvements

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Even if you accept that DanK had bad side effects as a result of taking Accutane (which I do) I think it is still true to say that by far the majority of people will only experience mild and temporary side effects from the drug. As such it shouldn't be unnecessarily demonised.

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btw, for me... dry nose, dry skin, dry lips, sore back when i bend over and get back up. that's it, it is minimal and manageable.

These side effects are all related to decreased sebum production.

The funny thing is I get dry eyes 5 years post-treatment, and dry skin (on my arms, hands, and other places :razz:), yet my face still gets oily. This anecdote supports the theory that decreased sebum production is a result of decreased 5-alpha-reductase activity post-treatment because the 5-AR enzymes are tissue-specific. It is likely that 5-AR activity is greater in facial tissue than other areas. I don't know if this hypothesis has been tested yet, but it would be something you could receive a degree for doing. ;)

Even if you accept that DanK had bad side effects as a result of taking Accutane (which I do) I think it is still true to say that by far the majority of people will only experience mild and temporary side effects from the drug. As such it shouldn't be unnecessarily demonised.

Why aren't they doing incidence studies? It would seem prudent, considering the knowledge we now have of retinoids and their very complex and important physiological roles in the body, systems and structures homologous in all humans.

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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The fact remains that you are a single individual, and one anecdotal report proves nothing. To make any sort of educated analysis on the incidence of side effects and to separate placebo effects from real ones, we need side effect reports from a good cross section of patients that allow us to determine what is statistically significant and what is anomalous.

In other words - while no one can say definitively that Accutane didn't cause your unusual symptoms, neither can you claim definitively that it did.

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In other words - while no one can say definitively that Accutane didn't cause your unusual symptoms, neither can you claim definitively that it did.

I'm not claiming that Accutane caused my symptoms. I am simply stating that after my Accutane treatment, I experienced such and such symptoms. And I have corroborated all of my claims with a body of experimental evidence, that indicates the symptoms I experience are indeed a highly possible result of the Accutane treatment I underwent nearly 5 years ago. If I were to weigh the evidence, then I would favor experimental over statistical incidence rates because the criteria for analyses are always determined by the outcomes of experimental research. To this day, there have been no thorough meta-studies on the long-term effects of Accutane in the US. The French Montpellier study from 93-94 still has not been released to the public. There have been many cases demonstrating that hypervitaminosis A is causal to neuropsychological disorders, among other things.

In regards to the physiological effects I have briefly described in the above post, they occur in every single patient. This is fact, not some broad belief based on statistical inference, or the lack thereof.

I welcome incidence studies, and I hope that a large number of patients will be required to partake in them which include very specific criteria for both the disorders and those associated with 1) impaired vitamin A metabolism, 2) retinoid singaling dysregulation, 3) reduced 5-AR activity, 4) and the plethora of serious conditions indicated in other studies on the drug. Regular tri-yearly PET and SPECT scans, in addition to IQ, cognitive, and other psychometric testing would be relevant.

I am not going to accept any future meta-study as credible that does not have very specific criteria derived from the body of experimental research now available. If not, then it will be another global-warming situation, where research serves no purpose but to further one's own argument as opposed to the truth.

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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Ok... Ok..... ok.....K..... ya know- people crack me up. This fellow over there is so high strung it's almost scary. Doctors are telling you they won't run tests for things because you probably don't have anything wrong with you except a disorder called "Hypochondria".

That being said- My sister works for a doctor, he is also MY practicing physician and he takes extra care of my family because he loves my sister so much. He TOLD me to go on Accutane. Flat out said there's no reason in the world not to take it if you have acne except if you are pregnant or are not mature enough to NOT get pregnant while taking it. He also said that a problem that comes along with accutane is people who are hypochondriacs who take the drug and suddenly become research analysts who find out every possible side effect and automatically have it. Young Doctors in medical school often develop this problem.

You only know that retinol signaling dysregulation causes A/B/C because you researched it.. Which is wacky. I'm sorry, but it IS. Stop being so crazy that you actually have a list of things wrong with you... Come the hell on, dude- lighten UP. Stop comprising lists of things you have wrong with you and go enjoy your life. You live one time and you are spending yours reading case studies about why you have painful nocturnal emissions...which baffles me because you are sleeping (hence the nocturnalness of the emission) so how do you know it's painful?

Honestly.. stop researching retinol signaling and whatever other fallulah bell nonsense you are doing and go outside... Get some fresh air, Hang out with your friends, meet a girl... Anything is better than what you are currently doing which is wasting your life trying to research why you feel bad..

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Ask your doctor about isotretinoin and its metabolites, ATRA and 4-oxo, crossing the blood brain barrier and binding RAR and RXR type receptors in neurobiological systems. I would be interested to hear his answer. Please tell him to be specific regarding the particular mechanisms by which any of these processes do not occur, if he is of that opinion. Also, tell him to reference studies. I would be interested to read them.

-dank

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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Isnt it perhaps beneficial in some instances to lower dht for some men? People spend 100$ a year on Propeica, hairloss treatment, which is specificially meant to inhibit that enzyme activity.

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Yes and they get worse if I eat foods high in Vitamin A. The people that seem to be bothered by side effects are those of us who only had very mild acne or a one-off experience of acne and then took Accutane. It doesn't appear that those who have the extremely severe pitting and scarring kind of acne get affected as much by the ingestion of Accutane (which it was supposed to originally be intended for...I think that is correct). Overall I still think it's an awful drug.

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The people that seem to be bothered by side effects are those of us who only had very mild acne or a one-off experience of acne and then took Accutane.

I have noticed this as well, it's the main reason i try to discourage people with this type of acne from taking Accutane.

Overall I still think it's an awful drug.

Overall i still think it's a miracle drug.

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The people that seem to be bothered by side effects are those of us who only had very mild acne or a one-off experience of acne and then took Accutane.

I have noticed this as well, it's the main reason i try to discourage people with this type of acne from taking Accutane.

Me too. They also seem less likely to stay clear. Why is that. Seems totally counter-intuitive (sp?)

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The people that seem to be bothered by side effects are those of us who only had very mild acne or a one-off experience of acne and then took Accutane.

What studies indicate this?

Overall i still think it's a miracle drug.

For people with cancer, it is a miracle drug. Understanding more about the causes of Accutane's side effects will lead to more effective and safer drugs. In my opinion, we will not see Accutane on the market 3-4 years from now; it will eventually be superseded by another retinoid or a novel treatment for acne involving site-specific inhibition of 5-AR activity, with the addition of other mechanisms.

Isnt it perhaps beneficial in some instances to lower dht for some men? People spend 100$ a year on Propeica, hairloss treatment, which is specificially meant to inhibit that enzyme activity.

Finasteride is a reversible inhibitor of 5-α-reductase type II. Accutane's effect on 5-AR activity is irreversible. This is likely the mechanism by which it permanently decreases sebum production.

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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What studies indicate this?

I don't know of any. As far as i can tell, it was just a personal observation. Hell, i don't know of any studies that even used patients with less than severe acne as subjects, do you?

For people with cancer, it is a miracle drug.

For people like me it's a miracle drug.

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This topic is scaring me into not wanting to take accutane anymore

then he's accomplished his purpose

Dank what is your purpose to scare people into not taking accutane?

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Well, I have to say that I would strongly advise anyone to avoid Accutane like the plague (please see my thread entitled Accutane Disaster for why I say that). I have no ax to grind with anyone, no reason to take a stance one way or the other for any reason but my own personal experience, but as I type this I am telling you that the risk isn't worth it. I know for many of you with insanely awful cystic acne this is tough to believe, but I have accrued as much scarring in 3 days as I did in 20 years fighting acne. It's just not worth it.

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Dank what is your purpose [sic] to scare people into not taking accutane?

My purpose is to present objective facts and falsifable hypotheses, both derived from and corroborated with empirical research, as to the most likely cause(s) of Accutane's side effects. If that scares you, then maybe you should think twice about whether it is me that is causing this or the information I have presented.

I admit that I have neglected to mention other relevant information. I am a human being; my knowledge is not all-encompassing. I am just stating the most likely causes in regards to why certain conditions are observed in a given number of Accutane patients. I am not claiming anything in regard to the incidence of these conditions. I do not have sufficient information to make statements regarding that matter. If any scientific-minded person does, I would be more than willing to engage in a discussion.

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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i'm kind of freaking out because of these posts on the long-term effects and how people with mild acne are likely to have bad side-effects and it won't work as well!!

i thought accutane left your body completely after a few months. also i have most of the symtoms dank mentioned like poor short-term memory, poor sense of time, depression, and general weakness and i havn't taken accutane yet.

possibly the people who have reported these symtoms after taking accutane were already predisposed to depression and fragility.

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possibly the people who have reported these symtoms after taking accutane were already predisposed to depression and fragility.

Yes, this is a definite possibility and is why psychometric screening should be performed before, during, and after treatment for an extended period. The FDA is finally requiring that dermatologists who prescribe the drug do these things. It should have been done the moment depression was indicated as a possible side-effect in 1985. These simple screenings will in effect lead to more information regarding Accutane's involvement in psychiatric and cognitive conditions.

In your case daria, I strongly recommend you undergo psychometric screening and a psychiatric evaluation prior to, during and atleast a year after treatment if you decide to undergo treatment with Accutane.

i thought accutane left your body completely after a few months.

Approximately 2-3 months, most quantities of remaining metabolites in the serum are minimal to non-existent. Not sure about the adipose or liver, though. Accutane or its metabolites shouldn't accumulate in the adipose because no storage or transport mechanisms are known for them.

##

-Roaccutane Science: http://max001.proboards42.com

-Retinoid signaling, etc.

-FDA Advisory Committee on Accutane (2000)

-Accutane package label (2005)

-Package label history

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Well, I have to say that I would strongly advise anyone to avoid Accutane like the plague (please see my thread entitled Accutane Disaster for why I say that). I have no ax to grind with anyone, no reason to take a stance one way or the other for any reason but my own personal experience, but as I type this I am telling you that the risk isn't worth it. I know for many of you with insanely awful cystic acne this is tough to believe, but I have accrued as much scarring in 3 days as I did in 20 years fighting acne. It's just not worth it.

scars from accutane?in three days something like acne fulimens ?cmon ppl im getting freaked out here.

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