Thanks skorpio for taking the time to write all this out here. Looks like a pretty reasonable theory. There isn’t enough talk about Accutane here. To me this is basically a small variant of the prevailing propeciahelp theory. It would make sense that the two syndromes wouldn’t have exactly the same mechanism, but rather similar and/or overlapping ones. This theory seems both overlapping and related in the areas where the two do not strictly overlap.
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I took it when i was 16. And i can compare to it still to this day. I started masturbating in 5th grade i think. I mean at the age of 16, you should have a good grasp on your normal libido and sexuality. Those are the times where you are the horniest too.
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I also began noticing a slight attraction to girls and occasional morning chubs at about 9 y/o that was accompanied by a few mild acne spots developing (adrenarche?). By the time I hit 12, it was intense and frustrating.
I did however, question if what I was experiencing while on Accutane and during the PAS crash, was a typical “end of puberty.” Looking back on it, it was a foolish view, but I was just making stuff up to explain my symptoms at that point. You may be right about it being incredibly confusing time for this to happen to a person.
But we’re talking 20-30 years of PAS for some of us, while both ATRA and 13-cis RA have been shown to be excreted from the body as 4-oxo-glucuronated and glucuronated metabolites. Even etretinate (the longest life of any retinoid known) is undetectable after 3 years. What Grant Generaux proposes isn’t even a plausible hypothesis. That is demonstrated by Akos’ comments on the acne org link. Also, do any of us have common signs of retinoid poisoning (and Accutane therapy), such as skin peeling, cracked bleeding lips, extreme sun sensitivity, telogen effluvium, or the rarer, (but relatively common with Accutane) Stevens-Johnson Syndrome? People with these effects while on the drug rarely develop PAS and these are unheard of among long-term PAS patients.
Making conjectures about retinoid receptors is hypothesizing about the unknown, but making conjectures that Accutane, or its metabolites, could persist in the body after decades goes against everything that is known.
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Symptom-wise, what are the differences between PFS and PAS?
I’m convinced that post accutane we have some dysfunction in retinol metabolism or the like or maybe even sensitivity to retinoids. EVERY time you consume vitamin A, you produce accutane. We’re already damaged by accutane and probably have an altered retinoid metabolism after the fact. I’m not saying there’s still stored accutane in us. I’m saying, we probably have altered retinoid metabolism/sensitivity to retinoids after accutane. Considering all of the other long term effects, this wouldn’t be surprising. I get dry skin/lips/fatigue if I consume alot of dairy products. Not a coincidence…
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You still haven’t explained the difference in symptoms between PFS and PAS or provided any evidence of altered retinoid metabolism or sensitivity in PAS patients.
Lol, I never said I had proof. I said I’m convinced there is altered metabolism. Do you read? Also, the differences between pas and pfs are easy to spot. For one, finasteride doesn’t cause bodywide aptosis (including brain cells). It doesnt shrink the orbitofrontal cortex, like accutane. It doesn’t cause a systematic downregulation of testosterone, androgen receptors, igf1 and other pituitary hormones etc due to foxo1,p53, foxo3 upregulation. I can go on and on.
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If the All Things Male forum still existed I could point you to a conversation where members were trying RAR antagonists. Not certain of the outcome of this because it was many years ago.
yeah this is unfortunate that that forum no longer exists. I would be very curious to read about their findings and results. Since the outcome is unknown, that means that we should at least consider re-exploring this option. Even if the outcome was known, that doesn’t mean that other people wouldnt benefit from it. The same thing applies to PFS, there are some guys that have been cured by X treatment while other guys have experienced nothing from the same treatment or have even gotten worse from it. The point is, there seems to be a lot of variability with regards to these kinds of difficult to treat syndromes, its not necessarily a one size fits all type of deal when it comes to how we treat it.
Furthermore, its important to experiment with all kinds of things whether they work or not so that we can gain a more comprehensive picture of what we’re dealing with. Take PFS for example, we know for a fact that it involves androgen receptor dysfunction at some level. Even though we know that androgen receptor antagonists don’t always work, its still useful information to know that the androgen receptor is involved in this syndrome, its just another piece of the puzzle. The more we know, the better ideas and theories we can come up with.
Same goes for members of the long-gone Rag-forum trying both retinoid deprivation, and retinoid overload.
im really curious how they tried to achieve retinoid deprivation. I think given the nature of it, its just such a difficult thing to do since it most likely involved a very specialized diet. Assuming that is the case (and I could be wrong about this since I didnt read about their experiment) then long term compliance with the protocol would have been the most difficult thing to do. Speaking only for myself, I would be unwilling to stick with a low/no vitamin-A diet for months at a time, its simply so inconvenient. Likewise, I wonder how many people actually faithfully complied with said no/low vitamin-A diet and stuck with it for a sufficient amount of time? I think its quite likely that many who tried retinoid deprivation probably didn’t even stay with it for a sufficient period of time to have an actual effect, or maybe they “cheated” and were knowingly or unknowingly still consuming some vitamin A in some way.
There was a recent trend of PAS patients trying vitamin A deprivation spawned by some character named Grant Generaux
Well, im not suggesting that accutane is somehow still stored in our bodies like Grant Generaux is claiming. Personally I think this is an absurd notion. That being said, in this thread I did find a couple of people saying that their condition improved after reducing vitamin A in their diet.
-Just a few takes on what I have experienced so far going both anti-dairy (6 weeks) and vitamin a (3 weeks) since some people on here appear to be throwing a hissy-fit over diet changes.
-Dairy should be a must stop no matter what. Yeah, I’m sure that plenty of the diets people are taking aren’t really doing that much of anything (however I have heard that It seems like there is some kind of improvement when people are on diets that are restrictive in general), however, almost every diet I have heard people describe as effective involves cutting out dairy. For me, I have noticed a difference, because I feel less irritable now than i have in a long time. Obviously I’m not naïve enough to believe that cutting out dairy will solve all of your problems, but perhaps it can at the very least, lessen the slope of whatever downward trajectory we all seem to be on. I think for me it’s safe to say that I’m not 100% on the road to recovery at the moment, but I can’t say I’ve worsened significantly either (I’m not declining at my normal rate where I feel worse every month which I will happily take).
Also, I’ve noticed that I have been having a surge in testosterone at certain times (I’ve began to hit the gym regularly again because of it). However, this past week was somewhat lower (I exercised heavily every single night, and I think that might’ve worn me out).
-Whenever I go to clubs and parties now (I don’t know how else to put this) but it seems that my “mojo” is somewhat back (for those of you who remember the movie Austin Powers). I’ve also been responding to certain typed of music (ex Trance) in ways I used to respond a long time ago.
I havent read through the rest of that thread because its massive so I don’t know what become of these people, or if there were more people that experimented with it and did or didnt experience results from it. Ill probably go over it later when I have more time. Anyways, the point is, from what ive seen so far, there ARE indeed people who experienced benefits by trying to reduce vitamin A from their diet. Furthermore their way of doing it was “manual”, and as such it is much more subject to human error and possibly accidentally taking in vitamin A in different ways. What this means is that if a more efficient way of stopping vitamin A intake can be found then the rate and degree of success by removing vitamin A from the diet could potentially be much higher.
I was a dork when I was a teenager. Playing video games was more important to me than chasing girls. I did have a libido of course, and I did masturbate and look at porn, but my libido wasnt something that I valued nor paid particular attention to. Because my priorities were more focused on gaming and things not involving girls I never really noticed my libido disappearing or my erections becoming shitty, afterall there is no point in paying attention to these things if youre genuinely ok with your virginity right? 
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I was also a video game addict but a horny bastard aswell.
Is there a way back machine or anything to view old forums?
There’s some pdf out there that’s basically a book about how evil Vitamin A is. I looked at it briefly once but think I dismissed it as too nutty for me.
Anyway, the MAIN thing, the time-sensitive and critical thing, is that we recruit Accutane respondents to the survey as aggressively as possible! Can we do that guys? I would appreciate an update on the best places to go to find this community these days. I went around about a year ago but it’s time to do so again. I don’t use Facebook but will go anywhere and everywhere else. We should go in force. Please post guys to places that you are already members in.
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@skorpio88 @AccutaneZombie, take the survey!
You can believe whatever you want, speculate as much as you want, debate as much as you want, but in the end, if this problem will ever be solved, the real work will be done in a lab. To get the real work done, we need to get scientists interested in this problem. Scientists care for data. Here we have a survey that generates data in systematic way based on established questionnaires and we have the head of a leading biological center encouraging us to get more people to participate. Guess what, data from PAS patients is lacking the most. And here we have two PAS people with clearly sufficient time to take the survey. So, please do so!
The good thing is, the data is valuable no matter what „theory“ you believe in. Several times people in this discussions have said that this or that problem does not exist in PAS/PFS. But that’s based on gut feeling not fact. The survey can help to clear some of these misconceptions up. There is really no good reason not to take the survey!
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@skorpio88 I followed your soy flour, quercetin and matcha experiment back on solve, hoping it would help my condition. It temporarily made me feel better in some areas before I started feeling worse, and then went through the worst episode of derealization I’d experienced I’d ever experienced in my life.
People have been experimenting for years and years. We still don’t have a single replicated treatment that’s worked for a majority of people. Maybe you’ll get lucky and get better, but in case you don’t, contributing to the survey data is another egg to put in another basket.
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Original version of your post. One of the mods edited it so that it followed guidelines on theories.
Do the survey. Feel free to discuss retinol metabolism to death after, but spend like an hour or less helping out yourself and the rest of the community.
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This new sub reddit has garnered 260 members in just over a week
Somebody has already started a thread there to promote the survey but it could do with more interaction in the comments section
Looks like a good place to try to recruit more Post Isotretinoin patients to the survey.
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I know this is an old thread but I think its a great one. There’s also a relationship between Dopamine regulation and Androgens, which could also explain some of the sexual side effects like decreased penis sensitivity, ED, libido (altough libido is influenced by dopamine), etc. Great work putting together this together, @skorpio88. Im also curious as to how a complete liver detox could benefit us PAS guys.
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Just wanna chime in that I have done high dose turmeric( with black pepper, both mixed in milk for extra fat) and it did nothing.
I have extremely deficient vitamin D and my vitamin A reading is over the recommended amount, as seen in my latest blood tests. Feel free to check the thread out and start a discussion.
I absolutely agree with that. One month before i used an antibiotic named Flagyl for two weeks. It made my erections 10 times stronger, increased sperm volume and gave me libido after months. I was shocked of course. Than i found out that antibiotic with it’s other name “metronidazole” is a MAOI (monoamine oxidase inhibitor). That means it inhibits an enzyme named monoamine oxidase which is a dopamine catabolizing enzyme. At first i thought that antibiotic has helped me because it decreased the inflammation in my body. But then i found out that MAOI’s are a type of antideppressants. I am almost sure that my anhodenia, loss of libido, loss of enjoyment of anything, erection problems, sleeping issues are all related dopamine or maybe some more neurostereoids in brain. I am not sure if it’s about the quantity of these neurostereoids but the receptors they work with. I don’t know what you guys think but that experience made me think maybe this case is more solvable than we imagine.
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Take a MAOI antidepressant and find out I suppose. Risky but hey…