Jump to content

Isotretinoin induced sexual dysfunction

steroid depression retinoids

41 replies to this topic

#21 Tree1

Tree1

    New Member

  • Members
  • Posts & Likes
    Posts: 14
    Likes: 1
About Me
  • Joined: 07-October 11

Posted 14 October 2011 - 05:03 PM

Hi all,

I can echo the comments above. I took roaccutane 4 years ago, two weeks after I stopped taking the drug, I suffered from a complete loss of libido and erectile function. Further to this, the size and feel of my flaccid penis dramatically changed. I knew straight away something had gone wrong at a deep level - most guys suffer from the odd case of 'performance anxiety' in their lives, but this is completely different ball game. Complete loss of sex drive, loss of morning & spontaneous erections - is good evidence that roaccutane had a sever impact on my hormones.

I've seen so many urologists/pshycologists/endos over the last four years who have all told me this is 'in my head' - what a load of crap. We know that Roaccutane inhibits 5AR, which in turn prevents the convertion of T into DHT - as outlined by the above paper(s). Dubya is right - we are in the suffering from a similar set of (persistent) side effects as those who took propecia - because essentially both drugs act in a similar fashion (inhibiting 5AR, and possibly gene expression). Hormonal levels are only a very small part of the picture, I too think roaccutane affects hormone reception somehow.

I would be very interested in starting a similar site to propeciahelp.com - we absolutely need to bang our heads together and exchange research/ideas if we are going to get through this.

A variety of herbs/vitamins/minerals have provided temporary relief for me over the last four years - it seems accutane also throws a plethora of vitamins and minerals out of whack, and by supplementing these some relief to symptoms can be brought about. Be wary of supplementing vitamin d though (low vitamin d is very common in accutane sufferers). Despite improving sexual function slightly in the short run - it brought on horrific cognitive problems (poor memory/slurring of words/'brain fog') - I am currently still suffering from this.

Anyone suffering from this, please do PM me - I've pretty much tried every alternative therapy out there to try and treat my sexual dysfucntion over the last 4yrs. Some has helped, most hasnt - but it would be good to swap experiences of alternative therapies. Having been wrecked by roaccutane, Im rather hesitant to take any further pharmacutical grade drugs to try and improve this - I want to exhaust the 'natural' route first.

I can understand how casual readers of this would struggle to believe Roaccutane could do this. But seriously, do some research, read through the posted papers, browse the propecia forum (on which there is quite a few accutane sufferers) and take a look at the roaccutane action group forum website. It can. Permanent sexual dysfunction is just one of many sickening lasting effects this chemotherapy drug can have. It has pretty much wrecked my life.

To those who are suffering out there we must come together to exchange treatment ideas. I hope one day we will get through this.

Thanks

#22 DaveK

DaveK

    New Member

  • Members
  • Posts & Likes
    Posts: 18
    Likes: 2
About Me
  • Gender:Male
  • Joined: 04-November 10

Posted 18 October 2011 - 06:23 AM

All-

For those of us to be unfortunate enough to be victim to persistant (possible permanent) sexual dysfunction from isotrentinoin, PLEASE REPORT THIS TO THE FDA MEDWATCH. Here is the link:
http://www.accessdat...atch-online.htm

Ref:
http://www.google.co...&rlz=1I7_____en

Edited by DaveK, 18 October 2011 - 06:24 AM.


#23 IndigoRush

IndigoRush

    Member

  • Veteran Members
  • Posts & Likes
    Posts: 569
    Likes: 89
About Me
  • Gender:Male
  • Location:UK.
  • Joined: 07-February 10

Achievements

     

Posted 18 October 2011 - 07:05 AM

Doesn't seem you can outside the US.
I live in the UK

#24 Foljiny

Foljiny

    New Member

  • Members
  • Posts & Likes
    Posts: 13
    Likes: 0
About Me
  • Joined: 13-September 10

Posted 18 October 2011 - 02:07 PM

Can we have this topic pinned? Or at least a topic pinned that has a link to the The FDA Medwatch to allow people to report side effects such as this one to the FDA. If a mod out there is reading, please make it so

#25 DaveK

DaveK

    New Member

  • Members
  • Posts & Likes
    Posts: 18
    Likes: 2
About Me
  • Gender:Male
  • Joined: 04-November 10

Posted 18 October 2011 - 06:04 PM

Doesn't seem you can outside the US.
I live in the UK


Here is a helpful link to various county's respective reporting agencies. Credit to propeciahelp.com admistrators for compiling.
http://www.propeciah...ur-side-effects

#26 oli girl

oli girl

    Veteran Member

  • Veteran Members
  • Posts & Likes
    Posts: 1,678
    Likes: 108
About Me
  • Gender:Female
  • Location:USA
  • Joined: 16-March 09

Posted 18 October 2011 - 09:06 PM


Doesn't seem you can outside the US.
I live in the UK


Here is a helpful link to various county's respective reporting agencies. Credit to propeciahelp.com admistrators for compiling.
http://www.propeciah...ur-side-effects


You can also find links to where to report side effects in certain countries on the Roaccutane Action Group or U.K. Ragfourm

#27 accux

accux

    Junior Member

  • Members
  • Posts & Likes
    Posts: 29
    Likes: 6
About Me
  • Joined: 30-April 12

Posted 03 May 2012 - 04:27 AM

Are you guys getting morning erections?

I am now concerned after reading propeciahelp.com that not having enough erections might causes structural changes in the penis.

#28 thefloydfan

thefloydfan

    Member

  • Members
  • Posts & Likes
    Posts: 115
    Likes: 12
About Me
  • Joined: 23-August 11

Posted 03 May 2012 - 07:11 AM

Are you guys getting morning erections?


Yep I am. Sometimes it wakes up before me and to have my morning piss I have to do a hand stand over the toilet.

#29 accux

accux

    Junior Member

  • Members
  • Posts & Likes
    Posts: 29
    Likes: 6
About Me
  • Joined: 30-April 12

Posted 03 May 2012 - 07:22 AM

Are you having morning E al the time since you are off the drug, or has it improved from a non-existent state.

#30 thefloydfan

thefloydfan

    Member

  • Members
  • Posts & Likes
    Posts: 115
    Likes: 12
About Me
  • Joined: 23-August 11

Posted 03 May 2012 - 08:13 AM

I am actually still on the drug. There has been zero change in the frequency of my erections from before I started my course. My penis still has a mind of its own and it still looks up to me and watches me shave in the morning.

#31 accux

accux

    Junior Member

  • Members
  • Posts & Likes
    Posts: 29
    Likes: 6
About Me
  • Joined: 30-April 12

Posted 03 May 2012 - 08:35 AM

Well than, you'd better stop taking the drug.
Because your friend my start staring the floor one of a sudden.

#32 thefloydfan

thefloydfan

    Member

  • Members
  • Posts & Likes
    Posts: 115
    Likes: 12
About Me
  • Joined: 23-August 11

Posted 03 May 2012 - 11:31 AM

Well than, you'd better stop taking the drug.
Because your friend my start staring the floor one of a sudden.


Well I am 7 months into my second course and I have had zero occurrences of "Isotretinion induced sexual dysfunction", neither in my current course nor my first course. I just felt this thread needed some balance, as it could scare some guys off from taking a drug which could help them immensely.

It's awful that you and some other guys on this thread have this problem and I hope you solve your problem but I think you should explore other causes and find out what is causing the problem before telling other guys not to take Isotretinion.

#33 accux

accux

    Junior Member

  • Members
  • Posts & Likes
    Posts: 29
    Likes: 6
About Me
  • Joined: 30-April 12

Posted 04 May 2012 - 03:11 AM

"Well I am 7 months into my second course and I have had zero occurrences of "Isotretinion induced sexual dysfunction", neither in my current course nor my first course."

Why are you in this forum, if you don't have sexual sides?
People are posting to the forum to find out how other people are coping with sexual sides and you think that is funny?

I know what happened to me exactly when.
If you like playing russian roulette that is your call and good luck.

#34 thefloydfan

thefloydfan

    Member

  • Members
  • Posts & Likes
    Posts: 115
    Likes: 12
About Me
  • Joined: 23-August 11

Posted 04 May 2012 - 01:50 PM

People are posting to the forum to find out how other people are coping with sexual sides and you think that is funny?


It's awful that you and some other guys on this thread have this problem and I hope you solve your problem but I think you should explore other causes and find out what is causing the problem before telling other guys not to take Isotretinion.


Oh yeah it really sounds like I think its funny...

Why are you in this forum, if you don't have sexual sides?


If you like playing russian roulette that is your call and good luck.


I am on this forum because I am taking Isotretinion, I am on this discussion thread to discuss my experience of taking Isotretinion - I have not had sexual dysfunction, which you believe to be a side effect of Isotretinion .

Threads like these help people in a similar situation, which is good. However without balance they also serve to scare monger. Case in point you have compared taking the drug to playing a deadly game where people put a revolver to their heads, told me to stop my accutane course because you believe if a man takes Isotretinion he may suddenly develop erectile dysfunction and modestocalifornia has stated that my body could "snap" at any moment.

Erectile dysfunction affects men who have never taken Isotretinion, so there needs to be confirmation that it is in fact Isotretinion that has caused yours before you advise others not to take a drug which may help them.

Edited by thefloydfan, 04 May 2012 - 01:51 PM.


#35 accux

accux

    Junior Member

  • Members
  • Posts & Likes
    Posts: 29
    Likes: 6
About Me
  • Joined: 30-April 12

Posted 04 May 2012 - 06:26 PM

There are studies that have shown that accutane causes ED.
Accutane is known to be a 5-AR1 inhibitor and is therefore definitely effecting sexual hormones (and many other hormones as well).
ED is rare amongst <30 men. It is really not easy screwing your hormones etc naturally (wo taking any drugs) before you are 30-40.

Roche doesn't know how the drug works and considering the potential, published side effects one might have, I think it is fair to compare the drug to a simple probabilistic game (like russian roulette). These side effects are real and possible and might even be irreversable (I hope not) and chances of getting hit are much higher than as published by Roche (see Stefan's latest video- it is not easy to report your side effects) and you are taking the drug.

I checked the prospectus of accutane when I started feeling something was wrong but then it was too late. If somebody told me at the time he started having ED after taking this drug, I would have never taken the drug again let alone being a smartarse and lecturing him about the other potential causes of ED.
but again it is your life and I hope you don't get any side effects and come back to this forum looking for a cure, or a recovery story to have some hope about your future as a young man.

I am not here to scare people off, or drop Roche's profits etc, I am just wondering if there is a way to get over this and honestly I don't care whether you take the drug or not.

#36 Dubya_B

Dubya_B

    Member

  • Veteran Members
  • Posts & Likes
    Posts: 197
    Likes: 152
About Me
  • Gender:Male
  • Location:Pittsburgh, PA USA
  • Joined: 07-June 11

Posted 05 May 2012 - 03:32 PM

Saw this study linking isotretinoin to erectile dysfunction in another thread.
Thought it would be very relevent to this conversation.

[Erectile dysfunction during isotretinoin therapy]

Six male patients reported erectile dysfunction along with depressive symptoms during study of the safety and efficacy of isotretinoin in treating acne.

Could anyone get access to the full article? It would be nice to know the size of the study group and whether or not any patients in the control group experienced erectile dysfunction.

6 patients developing ED and depression would be very alarming if the study group were 100 people or less. Something like this could really help to verify our case.

#37 Darran

Darran

    New Member

  • Members
  • Posts & Likes
    Posts: 15
    Likes: 2
About Me
  • Joined: 05-November 12

Posted 17 December 2012 - 04:54 PM

During my second course of accutane my libido just vanished and now i suffer ED. 4 months on and i have seen no improvements, I am a 21 year old male,180 cm 75 kg and have always been extremely randy until accutane. I am 100% convinced accutane is the cause. Also suffer weird red rash occasionally (particularly in my face when i masturbate), watery ejaculate and possibly my urine is more cloudy then before i was taking accutane.

#38 mes6890

mes6890

    Margaret

  • Members
  • Posts & Likes
    Posts: 87
    Blog Entries: 1
    Likes: 45
About Me
  • Gender:Female
  • Location:Kentucky
  • Interests:Reader of acne.org since 2008. Things I have tried include antibiotics, most of the topicals (in high school before the cystic acne began in college), blue light therapy, spironolactone, saw palmetto, Obagi, and, of course, optimizing my diet. Most recently I tried Accutane, which was short lived because of the psychological and skin-thinning side effects. I wanted clear skin desperately, but I wish I'd heeded the horror stories. Accutane was the biggest mistake of my life.

    I also post things on occasion to warn folks of the potential dangers of taking saw palmetto and other DHT inhibitors, based on personal experience and the mounting testimonials of others.
  • Joined: 15-August 09

Achievements

     

Posted 05 November 2013 - 09:51 PM

The 5-alpha reductase connection to sexual dysfunction is real for a minority of individuals. I have near complete sexual dysfunction from taking small amounts of two 5AR inhibitors: saw palmetto and Accutane. I never had these problems before I took these things. I too know that this is a direct result of these substances. I had a crazy great libido, no problems rising to the occasion down there, before saw palmetto and Accutane. Anyone considering drugs or supplements in this class should know that sexual dysfunction is a real risk, and it's the worst thing that's ever, ever happened to me. I am only 23.

#39 Dubya_B

Dubya_B

    Member

  • Veteran Members
  • Posts & Likes
    Posts: 197
    Likes: 152
About Me
  • Gender:Male
  • Location:Pittsburgh, PA USA
  • Joined: 07-June 11

Posted 19 November 2013 - 04:32 PM

Most of us are aware of the much cited "Erectile Dysfunction During Isotretinoin Therapy" article from the Spanish Urological Assocaiation's journal where 6 patients undergoing "Accutane" treatment developed erectile dysfunction accompanying depression.

 

http://www.ncbi.nlm....pubmed/16447596

Unfortunately, the abstract contains no mention of the sample size for this study.
Was it 6 out of 100, 6 out of 1000?

So, I downloaded the full article from Science Direct and couldn't believe what I was seeing.



6 out of 20 (30%) of patients receiving isotretinoin developed erectile dysfunction during the study.

Only 2 out of 35 (5%) of the controls developed ED during the same study.



The evaluation took place 3-4 months into treatment, and surprisingly, during a 4-6 month follow-up after stopping treatment, none of the patients were found to have persistent ED. This does indeed serve as an indicator that the drug was responsible though.

12 out of 20 (60%) of the group given isotretinoin were found to have developed depression during the treatment, going by the Hamilton Scale of depression.

Only 3 out of 35 (8%) of the control group were found to have developed depression.



Those with ED, low testosterone or DHEA, or depression present before the study began were excluded.
The mean age of both groups was 32 (isotretinoin) and 33 (control group).

Another surprise was that T levels did not drop below 437ng/dl for more of the isotretinoin patients (%10) than controls(5%).

(2 in each group).
Again, this is interesting considering how many of us were found to have low testosterone shortly after treatment, but shows the
ED caused by isotretinoin is dependent on more than simply testosterone levels.

What's the deal here? Going by this study, the problem appears worse than you would think by reading the Accutane forums.
We know there will never be an objective study performed by any dermatological association to investigate ED being caused by one of their biggest cash cows. I wonder if they remove those who develop certain side-effects from their study groups when performing studies on the safety of the drug, or use other underhanded methods of skewing the presented information? Has ED even been considered as a possible side effect in a study of isotretinoin before this one?

Some say our life-altering conditions are a coincidence, but there are far too many "coincidences" happening.

Persistent idiopathic sexual dysfunction occurring in the teens and early 20s which is developed while taking the drug are not related to the drug? ...Get real!

The big question is why hasn't any other organization picked up on this, especially the FDA and NHS?


Edited by Dubya_B, 19 November 2013 - 04:53 PM.


#40 mes6890

mes6890

    Margaret

  • Members
  • Posts & Likes
    Posts: 87
    Blog Entries: 1
    Likes: 45
About Me
  • Gender:Female
  • Location:Kentucky
  • Interests:Reader of acne.org since 2008. Things I have tried include antibiotics, most of the topicals (in high school before the cystic acne began in college), blue light therapy, spironolactone, saw palmetto, Obagi, and, of course, optimizing my diet. Most recently I tried Accutane, which was short lived because of the psychological and skin-thinning side effects. I wanted clear skin desperately, but I wish I'd heeded the horror stories. Accutane was the biggest mistake of my life.

    I also post things on occasion to warn folks of the potential dangers of taking saw palmetto and other DHT inhibitors, based on personal experience and the mounting testimonials of others.
  • Joined: 15-August 09

Achievements

     

Posted 19 November 2013 - 08:50 PM

LOLZ, people will blame accutane for everything eh? Please refer to my avatar on what you all sound like.

Sorry to reply to this old thread but this is laughable.

Guys, sexual disfunction is really common (nowadays anyway) - stop blaming a drug that had nothing to do with it & research something that can actually FIX it.

A lot of this stuff is in your head as well, as long as you are fixated on blame, you are taking away from trying to change your situation, and probably making it worse.

PROFOUND. Nothing screams intelligence like assuming your positive experience on Accutane is universal.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users