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narcotix

The Quest To Cure Post-Accutane Sexual Dysfunction

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I'm making this post because it seems like this is a silent epidemic that limited amount of people have knowledge or insight about.

I've done vast amounts of research on this topic, reading countless medical journals, posts around the internet and have done individual research. I've only been able to produce meager results and its not enough. (Keep reading to find out)

I have these exact symptoms - similar to what everyone else is experiencing:

-declining libido/complete lack of sexual interest

-impotence/erectile dysfunctioni

-penis feels disconnected from your body/mind

-loss of sexual sensation

-watery ejaculate/seminal fluid is not thick

-decreased volume of ejaculation

-masturbating feels forced

-lack of sexual dreams, fantasies and thoughts

-lack of early morning erections

If you want to know a little more about me:

I posted a long time ago when I was 21 and was suffering from severe cystic nodular acne. This post was archived and can be seen here:

It's been 2 years since I finished a 5 month round of isotretinoin (claravis) (30mg/4 months & 60mg/2 months) @ 175lbs 6'.

This entire time I have been ignoring the symptoms and rationalizing in my head that its "just in the mind or maybe I was just feeling anxiety at the time" only to realize that I have been a victim of group think and diseased by the lack of knowledge some people possess. No one knows what it feels like to be you.

Accutane has not labeled a single side effect relating to sexual dysfunction. Sometimes people get away "scott-free" from serious side effects but not only were we not informed of the hidden secret in this poison we all got dealt the worse card in the end - impotence.

For anyone here who do not relate to these issues - before you say that erectile dysfunction is just psychogenic or its "All in your head" - Read this article:

One hundred and twenty cases of enduring sexual dysfunction following treatment

http://www.researchgate.net/profile/Joanna_Noury/publication/262926791_One_hundred_and_twenty_cases_of_enduring_sexual_dysfunction_following_treatment/links/543263ac0cf20c6211bc3d5a.pdf

Research no further - those symptoms you been questioning all this long are definitely real.

I have flipped through the 300+ pages of "Repairing the long term damage of accutane" thread and I'm sick of hearing sob stories that don't add any value to the discussion.

Yeah, I have Accutane induced erectile dysfunction and I wish I could go back in time, buts what's done is done - All I can do is try to cope with the damages only to realize doctors and the pharmaceutical industry never had my best interest in mind anyway.

Now I don't mean to sound bitter, but anyone who knows what I'm going through understands.

I want to figure out some of the possible causes of isotretinoin induced sexual dysfunction.

There are some theories out there that I can validate and some that I cannot.

Theories pending/need clarification

-Accutane destroys the connective tissue protein glycosaminoglycans (collagen, elastin, glucosamine, and hyaluronic acid)

-Accutane causes upregulation of FOXO1 (Which affects transcriptional activity of AR)

-Direct Damage to the alpha-3 Acetylcholine Receptor Ganglionic Autoantibody

-Accutane impairs nitric oxide synthesis (A general blanket statement)

-Accutane affects energy production metabolism (generalized statement)

Theories with substantial evidence and proof

-Inhibits 5-alpha-reductase (Prevents Testosterone from converting into the more potent DHT)

-Affects the Dopamine D2 Receptors (Hence our feelings of depression / lack of fulfillment )

-Reduces pituitary hormone levels (T, DHT, TSH, T3, FSH, LH, androsterone glucosiduronate, 5 alpha-androstan-3 alpha, 17 beta-diol glucosiduronate)

-Decreases IGF-1 hormone levels

Theories gaining substantial evidence and proof, but may need more clarification

-Accutane may cause dysautonomia or neurogenesis (there are some studies on this, but how this correlates to ED is not explored deeply enough)

-Isotretinoin affects the hippocampus (This has to affect how the brain uses NANC cells to stimulate nitric oxide - not sure though)

Essentially I would like to create a discussion to clarify if the unvalidated theories hold any truth and also figure out how to logically connect the validated theories to sexual dysfunction.

I've gotten really busy these days and haven't had much chance to dedicate to research so I need help from individuals to help me add to this exploration. More importantly I would like to mention this is intended to be a high level discussion. Please do not post anything that does not add to the discussion.

For the theories that I cannot validate help me clarify by adding supporting evidence , citing reputable sources while providing a brief summary backing your argument (if there are any). Once I compile this information I will post possible theoretical treatment plans. I will also include in that thread the Accutanes mechanisms of action affecting our symptoms that I mentioned.

Theories that have been validated with studies and data

-----------------------------------------------------

Regulation of dopaminergic pathways by retinoids: Activation of the D2 receptor promoter by members of the retinoic acid receptor–retinoid X receptor family

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC24972/

Decrease of Insulin Growth Factor-1 as a Novel Mechanism for Anti-Androgen Effect of Isotretinoin and Its Reported Association With Depression in Some Cases

http://jddonline.com/articles/dermatology/S1545961611P0793X/1

Short-term isotretinoin treatment decreases insulin-like growth factor-1 and insulin-like growth factor binding protein-3 levels: does isotretinoin affect growth hormone physiology?

http://www.ncbi.nlm.nih.gov/pubmed/20128787

How 13-cis-RA decreases DHT, androsterone glucosiduronate (adiol-G), and deviates the liver androgen pathway

http://www.ncbi.nlm.nih.gov/pubmed/8175961

Isotretinoin Influences Pituitary Hormone Levels in Acne Patients

http://www.ingentaconnect.com/content/mjl/adv/2011/00000091/00000001/art00005

Evidence for decreased androgen 5 alpha-reduction in skin and liver of men with severe acne after 13-cis-retinoic acid treatment

http://press.endocrine.org/doi/abs/10.1210/jcem.78.5.8175961

Pending Theories

-----------------------------------------------------

Influence of isotretinoin on hippocampal-based learning in human subjects

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3360864/

13-cis Retinoic acid (accutane) suppresses hippocampal cell survival in mice.

http://www.ncbi.nlm.nih.gov/pubmed/15251924

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Viagra? Thankfully never had any probs w my stuff after accutane. 4 real maybe u need to relax and stop worrying. That worry is hwats most likely causing your Ed.

Edited by Rittdk01
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There could be an entire forum dedicated solely to people with sexual side effects from Accutane. But here's just another thread started by yet another guy like us:

If you can, please send an email to the FDA ombudsman office via the link I provided in the above thread.

It's a catch 22: Extremely embarrassing to report, not officially listed as a side effect because it is underreported, doctors won't acknowledge it or report it when it happens to their patients because it is not officially listed as a side effect. ...And then we have people like doctor Rittdk01 who are there to lend support and advice when you lose the meaning of life to a chemotherapeutic cosmeceutical. Thanks buddy.

Edited by Dubya_B
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Alright, well I guess I'll send them an email when I get a chance.

Well as for forums... there's the propecia help forum which is essentially people who took finisteride...

Whether or not they have found a cure/remedy I'm not sure I haven't done enough research.

I don't really care at this point.. If my name gets out there whatever...This is a serious issue though and people need to be warned.

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Thanks! If enough of us contact the FDA about this directly, they might get off their asses and do their job.

Post-Accutane people aren't really openly welcomed on the propeciahelp forum any longer. ...Politics I think.

No, there hasn't been any reliable cure or treatment found for Post-Finasteride Syndrome yet, but there is a valid PFS research program currently taking place in several major medical institutions. It's not amateur bullshit.

There is no reason for your identity to be publicly revealed in association with reporting or sending an email to the FDA about sexual side effects from Accutane.

Believe me, if something like that happened, there would be a huge backlash and heads would roll.

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Haha, wuuurdd...for real? Thas real talk sahn. 4 real tho . Alright, anyone else?

U r creepy as hell. Word maybe your limp dick is punishment for being such an ass.q

Edited by Rittdk01
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Honestly, I'm about ready to make the companies which produce accutane pay for their damage. And not just in financial terms either. I will not live this way forever. I WILL kill myself if things do not begin to change.

Edited by cnb30
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Hey narcotix are you still on this post? If so please email me 
(email removed)
im in the same boat, and I'm ready to be normal again and I know there's a way to be normal again

Edited by Control Panel
no public display of email
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I just came across this post and would like to add to the discussion with what I have found. I thought that my problems were genetic, but the more I read, the more I'm convinced that Accutane is at least partially to blame. I hope this is informative enough to help someone who has experienced these terrible problems. I came at this from the hormone replacement therapy angle and have had some success.

History:
I took Accutane as a teen around '95-97 on and off (mostly on) prescribed by a family doctor for years. It did indeed stop and reverse the severe acne that I had, but I had some sexual dysfunction starting in my early twenties. I chalked it up to nerves from "growing up": new job, marriage, moving out, etc. I had 3 kids with intermittent ED and what I now recognize was a profound lack of sexual interest. I didn't recognize it then because it started not long after the Accutane and it just seemed normal to me that this must be what growing up is like. By my mid-thirties, the ED was so bad that my wife finally told me I should go see a doctor. 

Treatment:
A urologiest checked my testosterone twice in 2015: 224 and 156 ng/dL. Those are very low results, even after LabCorp dropped the normal range last year. So I started on TRT, and for 3 years my doctors and I have tried many permeutations to try to find something that worked at all. Aside from low testosterone, my SHBG was also low being in the mid-teens. Normally with low SHBG, you will find a guy who has higher free testosterone and also higher estradiol (this is the active estrogen that testosterone converts into via aromatization) along with higher DHT (testosterone converts into DHT through 5-alpha reductase). I had none of those things and so something was very wrong. Failure after failure, I adjusted and iterated. I work in IT and so I test and adjust and re-test until I find something that solves the problem. I am fortunate enough to have diagnostic testing covered under my insurance so I order tests all the time to track these things. 

Results:
I feel that I am finally on a treatment protocol which is bringing me out of these terrible problems at long last. I feel great, sex life is now pretty good, and my lab values look great with the exception of triglycerides. I'm genetically predisposed to bad lipids, but I've also read that our friend Accutane can cause that as well.

This is what I take for my TRT protocol:
- Testosterone Cypionate
- Compounded testosterone cream
- DHEA
- HCG (Pregnyl)
- Cabergoline
- Metformin
- Liothyronine (Cytomel)

I do still sometimes use PDE5 inhibitors or Trimix, though at this point it is more for fun than necessity.

Observations:
It is still largely unknown what exactly causes symptoms of post-finasteride syndrome and how those processes work, but we do know what 5-alpha reductase inhibitors have extremely damaging consequenses even long after their use is discontinued.

I think that TRT is essential for overcoming this. And if your testosterone is low, it is the only option. It is a life-long treatment/commitment. But simply throwing testosterone at the problem is not enough. You need to look at DHT, prolactin, cortisol, all of these other biomarkers. They are all connected.

For TRT, I never bothered with gels. They are very low in testosterone (1.62% in the US, 2% in EU) and that isn't going to do anything here. Injections (Cypionate) are the gold standard and it is cheap and easy to do at home. I have to do them every day since my SHBG is low. 

Remember above when I said my DHT was low? That's what the compounded T cream is for. There is absolutely nothing that will raise your DHT better than applying T cream (not gel, alcohol-based gels will burn) to one's scrotum. The creams which come from a compounding pharmacy can be made up to 20% (compare to Androgel 1.62%). DHT is essential for a healthy sex drive, and 5-AR inhibitors seemingly permanently interfere with the production of DHT.

DHEA is optional, and for me it reduces anxiety. It is a precursor to your sex hormones.

HCG 2-3 times a week. It really raises libido as well as imrproves mood in a lot of guys.

Cabergoline is used to lower prolactin. It does this by increasing dopamine. This makes for extremely powerful orgasms. It is to be taken very sparingly though because prolactin protects your immune system and heart and you shouldn't drive it too low.

Metformin not only reduces glucose if it is high, but it also reduces insulin if it is high. There are studies showing that it can reduce the damage caused by aging, metabolic syndrome, and possibly even some cancers.

Lastly, I take T3 because my thyroid is not quite working right even though the lab results look "normal".

Keep in mind that sexual function is much more than these things, and it is also much more than the damage that something like Accutane can disrupt as well. It is often one of the first things to go and also one of the last things to return if something is not working right in your body. You really do need to take a 360 degree view of your health. It takes a lot of testing and trial and error to find exactly what is wrong and what works for you specifically.

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On 5/22/2018 at 7:59 PM, Jason3 said:

I just came across this post and would like to add to the discussion with what I have found. I thought that my problems were genetic, but the more I read, the more I'm convinced that Accutane is at least partially to blame. I hope this is informative enough to help someone who has experienced these terrible problems. I came at this from the hormone replacement therapy angle and have had some success.

History:
I took Accutane as a teen around '95-97 on and off (mostly on) prescribed by a family doctor for years. It did indeed stop and reverse the severe acne that I had, but I had some sexual dysfunction starting in my early twenties. I chalked it up to nerves from "growing up": new job, marriage, moving out, etc. I had 3 kids with intermittent ED and what I now recognize was a profound lack of sexual interest. I didn't recognize it then because it started not long after the Accutane and it just seemed normal to me that this must be what growing up is like. By my mid-thirties, the ED was so bad that my wife finally told me I should go see a doctor. 

Treatment:
A urologiest checked my testosterone twice in 2015: 224 and 156 ng/dL. Those are very low results, even after LabCorp dropped the normal range last year. So I started on TRT, and for 3 years my doctors and I have tried many permeutations to try to find something that worked at all. Aside from low testosterone, my SHBG was also low being in the mid-teens. Normally with low SHBG, you will find a guy who has higher free testosterone and also higher estradiol (this is the active estrogen that testosterone converts into via aromatization) along with higher DHT (testosterone converts into DHT through 5-alpha reductase). I had none of those things and so something was very wrong. Failure after failure, I adjusted and iterated. I work in IT and so I test and adjust and re-test until I find something that solves the problem. I am fortunate enough to have diagnostic testing covered under my insurance so I order tests all the time to track these things. 

Results:
I feel that I am finally on a treatment protocol which is bringing me out of these terrible problems at long last. I feel great, sex life is now pretty good, and my lab values look great with the exception of triglycerides. I'm genetically predisposed to bad lipids, but I've also read that our friend Accutane can cause that as well.

This is what I take for my TRT protocol:
- Testosterone Cypionate
- Compounded testosterone cream
- DHEA
- HCG (Pregnyl)
- Cabergoline
- Metformin
- Liothyronine (Cytomel)

I do still sometimes use PDE5 inhibitors or Trimix, though at this point it is more for fun than necessity.

Observations:
It is still largely unknown what exactly causes symptoms of post-finasteride syndrome and how those processes work, but we do know what 5-alpha reductase inhibitors have extremely damaging consequenses even long after their use is discontinued.

I think that TRT is essential for overcoming this. And if your testosterone is low, it is the only option. It is a life-long treatment/commitment. But simply throwing testosterone at the problem is not enough. You need to look at DHT, prolactin, cortisol, all of these other biomarkers. They are all connected.

For TRT, I never bothered with gels. They are very low in testosterone (1.62% in the US, 2% in EU) and that isn't going to do anything here. Injections (Cypionate) are the gold standard and it is cheap and easy to do at home. I have to do them every day since my SHBG is low. 

Remember above when I said my DHT was low? That's what the compounded T cream is for. There is absolutely nothing that will raise your DHT better than applying T cream (not gel, alcohol-based gels will burn) to one's scrotum. The creams which come from a compounding pharmacy can be made up to 20% (compare to Androgel 1.62%). DHT is essential for a healthy sex drive, and 5-AR inhibitors seemingly permanently interfere with the production of DHT.

DHEA is optional, and for me it reduces anxiety. It is a precursor to your sex hormones.

HCG 2-3 times a week. It really raises libido as well as imrproves mood in a lot of guys.

Cabergoline is used to lower prolactin. It does this by increasing dopamine. This makes for extremely powerful orgasms. It is to be taken very sparingly though because prolactin protects your immune system and heart and you shouldn't drive it too low.

Metformin not only reduces glucose if it is high, but it also reduces insulin if it is high. There are studies showing that it can reduce the damage caused by aging, metabolic syndrome, and possibly even some cancers.

Lastly, I take T3 because my thyroid is not quite working right even though the lab results look "normal".

Keep in mind that sexual function is much more than these things, and it is also much more than the damage that something like Accutane can disrupt as well. It is often one of the first things to go and also one of the last things to return if something is not working right in your body. You really do need to take a 360 degree view of your health. It takes a lot of testing and trial and error to find exactly what is wrong and what works for you specifically.


Thanks for your reply. I have outlined what I believe is the problem relating to Accutane sexual side effects here if you are interested - https://www.pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-enzyme-very-plausible-currently-seems-to-be-the-most-likely-cause-of-pas.9/
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Interesting. So we have sort of been chasing the same problem, only from different angles and reasons. I was diagnosed with primary hypogonadism (low testosterone). And the reason is "unknown". No trauma, illness, pathologies ever. The ONLY thing I took aside tom antibiotics as a kid was Accutane. I last looked for a connection a couple of years ago but didn't find this forum then or I would have joined sooner. 

I think that you are on the right track. This has to do with disrupting 5-AR. I feel that there is some type of permanent damage done either to the production of the enzymes needed or to the AR receptors themselves. which inhibits at least the production of DHT, and possibly more. There really aren't many tests for detecting 5-AR insufficiency unfortunately.

I get a lot of frequent bloodwork done because I am a data guy and feel that in order to try to fix the problem, I need to understand it. And for that I need numbers. I have been on very high doses of testosterone resulting in 1300-1400 ng/dL Total T which is definitely past the line of a therapeutic level, and my DHT seems to have this set point of about 40-41 ng/dL. It should be in triple digits with that much testosterone. And as I said above I also have low SHBG which means testosterone should even more prone to converting to DHT (and Estradiol) to the point of being problematic. But that still does not happen. Something broke that process.

Excessive DHT and Sebum in the skin causes acne. I probably did have high DHT as a kid because of the low SHBG, got horrible acne from it, then was put on Accutane. The Accutane got rid of the oily skin and acne and then damaged the 5-AR process which now inhibits DHT resulting in lower libido and slower hair growth. Before going on testosterone replacement I used to only shave every 5 or 6 days. That is a DHT problem.

I am a proponent of using the right tool to fix something. And if your hormones are out of whack then they need to be fixed. We don't fully understand how 5-AR works so we can't fix it if it is broken. But we can do things to mitigate the problems this causes.

Raising DHT was a huge turning point for me.This is how I do it. Testosterone injections, HCG, and also testosterone cream. Not a gel like Androgel or Testim, but a cream from a compounding pharmacy. The creams can be made with up to 20% testosterone - far higher than the gels. And you apply it to your scrotum. Nothing else will raise DHT as well as T cream applied to the scrotum. There used to be a DHT cream called Andractim in Europe, but to my knowledge it was discontinued. I also put creatine in my coffee every day. There is a study showing that creatine can raise DHT by as much as 56%.

My Prolactin was also high (around 20) so I take a quarter tablet of Cabergoline every week. Many people jump to testosterone and then Estradiol for libido problems, but they neglect DHT and Prolactin. There are other hormones involved as well in libido but these are big ones. If you can get your libido going then the PDE5 inhibitors like Viagra and Cialis start working. There are also medications like Bimix and Trimix that are injected into the penis and induce a 2-3 hour erection for sex.They work great and aren't as bad as they sound - it doesn't hurt.

Is this going to work for everyone? Nope. But it can certainly work, and maybe it is an option to talk with a knowledgeable doctor about if you haven't explored it. The tricky part may be finding that knowledgeable doctor. Maybe we can't fix this problem right now, but at least there is some hope in getting relief from it. These aren't quick fixes either. It took me almost 4 years of trial and error, and I work in the HRT field with access to some of the great minds in it. But I did eventually find something that works.






 

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