Accutane induced sexual dysfunction

This topic contains 12 replies, has 4 voices, and was last updated by Profile photo of maxymoon maxymoon 1 month ago.

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  • #2114
    Profile photo of ninelives
    ninelives
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    I have seen numerous forums devoted to this topic which is very alarming. I started taking Roaccutane when I was around 14 years old for my acne. It certainly fixed my acne, but I have always noticed that after treatment my libido is non-existent. I can still get erections but my sexual arousal is never there, I no longer feel viscerally aroused, as I did before I took Roaccutane. I had always thought it may be an underlying hormone problem but its only today that I found forums of people linking Roaccutane usage to diminished libido. This is a serious side effect which is evil. Robbing a young person of their sex drive, debilitates them in a very personal way. It saps them of their life energy and drive, and makes conditions such as anxiety and depression almost inevitable. I am now 24 years old and still have no libido/sex drive.

    I just wanted to know if anyone has experimented with any drug compounds that have actually helped raise their libido from almost zero to anything noticeable. I experimented with Testosterone Ethanate when I was 21 but again it had no effect on my sex drive, despite taking up to 600mg per week at one point, which is a very high dose.

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  • #2115
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    dubya_b
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    Hello. Thanks for commenting.

    I have been the same as you since quitting Accutane 17+ years ago. Tried several different types of hormone replacement therapy and none worked. There have been a handful of anecdotal recoveries from Accutane-induced sexual dysfunction, from several different types of treatments, but not one appears to be reproducible. Most of the recovery stories come from people who have only suffered side effects for a few months to a year, so they are more than likely natural recoveries. …When long-term sufferers try those same exact treatments, it never works.

    The most talked-about remedies have probably been water fasts, cannabis, and finasteride (would strongly advise against finasteride).

    This site is dedicated to finding scientific explanations for why this happens to some of us. Hopefully, once we know what went wrong, we can do something to treat it.

     

     

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  • #2116
    Profile photo of ninelives
    ninelives
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    If Accutane really has induced sexual dysfunction, this should be a global outcry against this drug and the company that profits from it. I wanted to ask, have you ever tried L-DOPA or a dopamine agonist for sexual dysfunction?

    I have seen many posts of people trying to relate the problem to androgen receptor insensitivity. People have linked the fact that Accutane upregulates FOXO, which inactivates/downregulates androgen receptors as being the cause of the problem. However I find this hard to believe as I am able to gain muscle mass etc. and have a lot of body hair growth. I really do hope someone can find a solution to this.

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  • #2117
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    dubya_b
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    The stigma of having sexual problems prevents many people from discussing or reporting them. Doctors find it unbelievable since it is so rarely discussed. This is also likely to be a rare side effect among a small percentage of those who use Accutane.

    I have used dopamine agonists. The benefit was minimal. I also have normal muscle mass and body hair growth.

    There is the possibility that the effects of Accutane that lead to sexual dysfunction are focused on the central nervous system in many of us. The same has recently been discovered of post-finasteride patients with side-effects similar to ours:

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  • #2118
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    ninelives
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    Yes I know, I’ve literally been dealing with these problems for last 8 to 9 years and have never once spoken to another person, let alone my GP about it. I have just read something interesting, which may be worth trying. The use of dopamine blockers such as risperdal. Given that excess retinoic acid has been shown to upregulate dopamine receptors, possibly permanently. Using dopamine blockers could re-sensitize the dopamine pathways to the effects of testosterone etc. One accutane sufferer claims this has given him his sex drive back. This would be interesting to test, as it seems all other people have tried dopamine agonists, which typically give temporary benefit which then fades.

    the guy on post number 18 here talks about it – http://www.allthingsmale.com/community/threads/introduction-and-my-beliefs-on-accutane-side-effects.22768/

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  • #2119
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    dubya_b
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    Assuming the risperdal recovery you are speaking of is Paulo, he later admitted to going on a bit of a rant during some stressful times and that the risperdal didn’t help in the long run.

    Also, if you haven’t done so yet, please report your side effects. You don’t have to go through a doctor to do it. There is a link to the FDA Medwatch reporting system on the “report your side effects” page on this site.

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  • #2120
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    ninelives
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    Yes it was Paulo, that is a great shame. In what way was the L-DOPA benefit minimal? Did you have any sexual benefit? I have already reported to the FDA. I am starting to feel slightly hopeless, as I really can’t imagine many scientists/researchers are looking into this topic at the moment. Given the fact, that most people don’t even know it exists.

    The only way we are going to have any progress here, is if we can get a sample size of perhaps 20 males who suffer from permanent sexual dysfunction after using accutane. We would need to:

    1. Get a wide range of blood tests to see if there are similarities in any hormonal profiles or neurotransmitters etc. (this is likely to be fruitless) from this group.
    2. Get brain scans taken. It would be difficult but it may be possible, using a functional brain scan to measure activity in a normal state versus after taking a dopamine agonist such as L-DOPA to see if any parts of the brain which would be expected to show activity, which don’t. There was research undertaken on acquired male sexual dysfunction in France, which compared the brain scans of normal males with hypoactive sexual desire disorder (HSDD) males, and it pinpointed an area of the brain called the orbitofrontal cortex which showed sustained activity in response to males with sex dysfunction after viewing erotic material. Where as in normal males its activity was suppressed in response to erotic material which allowed dopaminergic signalling. Interestingly, testosterone also acts on this part of the brain and suppresses activity.
    3. We need to put pressure/ or suggest to a research group to begin studying this.

    After looking on the forums, it really seems improbable that altering hormone levels or taking supplements will fix this issue. I have already tried using quite high level of testosterone to no avail. The only solution I can likely envisage, is deep brain stimulation. This sounds drastic, but its already been used for depression, bipolar, Parkinsons and even anorexia. If the drug has in someway altered the expression of certain receptors or proteins in the brain, in a permanent way, only a treatment such as deep brain stimulation could easily bypass the need for organic stimulation. Thus stimulating the areas of the brain required for sexual desire/libido by artificial means.

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  • #2121
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    ninelives
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    Hello ladies and gentlemen,

    It was only yesterday that I made the connection between ten years of sexual dysfunction and taking accutane. I was prescribed accutane at 14 years old for my moderate acne. It cleared up my skin but stole my sex drive. I can honestly say, I no longer have a libido or sexual desire, and I can only link this to accutane use as I have never been on other prescription meds and had normal sex drive prior to usage. Otherwise I am a healthy, athletic male, who has experimented with high levels of testosterone as well as other drugs but to no avail. My sex drive remains at zero. Words cannot express the regret and deep sadness I feel, when I reflect on the fact that I may have potentially lost one of the most important things in life which will and probably has affected countless relationships, my personality, my susceptibility to depression and the fun/excitement I have missed out on, in exchange for an acne-free face. This is beyond words. There is no justice here, and I doubt there is going to be a happy end to this story.

    I have seen many people proposing reasons as to why accutane affects libido. I have a theory which I have not seen anyone put forward yet. However it seems to account for a lot of the reasons changing hormonal levels etc. has had little effect on libido. To look at the effect of a drug on sex drive we must ultimately look at the brain, as this is the place all libido and sexual desire is derived from. Hormones alone don’t give you, your libido, hormones stimulate neuronal activity in specific areas of the brain, it is this activity which gives you a libido.

    Bremner et al, is one of the only studies which looked into functional brain imaging of patients treated with accutane (Isotretinoin) (1).This study revealed that Isotretinoin specifically altered the activity and metabolism of a brain region called the orbitofrontal cortex in those who took Isotretinoin versus controls. Unfortunately, brain images were not taken after treatment was discontinued, so we cannot say whether these effects were reversed once treatment was removed or whether they persisted. I have contacted an author of the study for more information. Given the possibility that Isotretinoin can cause epigenetic changes, it is possible that these changes are maintained after treatment.

    Now, interestingly one of the only studies which has been conducted on brain activity in hypoactive sexual desire disorder in males, which is essentially sexual dysfunction. Showed that, the major difference in response to sexual stimuli, in males with sexual dysfunction and normal males was a difference in the activity of the orbitofrontal cortex (2). As such, it appears the orbitofrontal cortex plays a key role in sexual desire, and it appears that Isotretinoin specifically alters activity of this brain region.

    Given this, it seems highly plausible to me that this could be the culprit we have been looking for. However what is really needed now, is to see whether those changes in the orbitofrontal cortex remained after treatment had been stopped. As it is also quite possible that these changes were only temporary. If these changes in orbitofrontal activity/metabolism were reversed after a period of stopping treatment, then my theory is incorrect.

    Unfortunately, this puts us fellow sufferers in a slight predicament. The orbitofrontal cortex is not a very well studied part of the brain. If it has been changed in a fundamental way, possible treatments will be difficult to come by. This will sound extreme, but I can only propose deep brain stimulation as a viable and potential treatment. This is a medical technology which is progressing at a rapid rate. It has recently been used for Anorexia, and so I can see someone easily making the case to use this for a debilitating issue such as sexual dysfunction. Interestingly, a deep brain stimulation protocol for the orbitofrontal cortex has already been developed by Scientists out of Oxford University. One was implanted into a woman with low sex drive, which markedly improved her sex drive. According to this article (3). However I cannot actually find the original paper, in which the woman had the device implanted. If someone could post it, that would be great.

    I am sorry this is such a long post, but I wanted it to be conclusive and offer some hope, in a seemingly hopeless situation. I can only ask that we all investigate this further, but what is more important, is that we email and message researchers and neurosurgeons raising the topic of brain imaging studies and deep brain stimulation for sexual dysfunction. If we remain on forums and message boards, nothing will be done. Nobody will bother researching conditions which they don’t know exist or see no clinical benefit in treating.

    Sexual dysfunction in many ways is a far greater and more debilitating ailment than anorexia or many illnesses. It strikes us in a very personal way, and in a way that most people would never be able to appreciate or understand. Additionally, this may also be the mechanism by which other drugs such as Finasteride work.

    Feel free to message me, also send over email address with your symptoms /info. We need to start to amass patient with these problems if we are to have any kind of case or chance of making this a legitimate topic of research/concern.

    Also if anyone has had any success with Bremelanotide /  PT-141, please let me know.

    My email is nine_livez@outlook.com

    I tried to make a group, as I feel we need something more concrete than forums. Please make better suggestions. – https://www.goconqr.com/en-US/groups/54817

    Much Love,

    Nine livez

     

    (1) – http://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.162.5.983

    (2) – https://www.ncbi.nlm.nih.gov/labs/articles/14561426/

    (3) – http://brainblogger.com/2009/01/08/deep-brain-stimulation-for-pleasure/

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  • #2137
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    dubya_b
    Keymaster

    Thanks for this. Great information all-around. Especially in regards to the second study you cited.

    There was a post-Finasteride study published last year, which included brain imaging, showing similar alterations in brain function.

     

     

    Not sure what interest Bremner may have in performing further studies on Accutane patients. Roche put him through a hell of professional harassment over the study. The head of the psychiatry department at Bremner’s university, Charles Nemeroff, is also rumored to have come down hard on him for publishing.

     

    FYI- One person I am in contact with had luck with PT-144, but he said it worked more like Viagra, rather than something that actually boosted libido. He goes by “dave22k” on some Accutane-related forums. Think he may have posted his experience on All Things Male.
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  • #2138
    Profile photo of ninelives
    ninelives
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    Yes that study was funded by Mr.Grant who lost his son to suicide whilst taking Accutane. I believe Mr.Grant is behind this website – http://www.accutaneaction.com/studies/index.html

    He seems to be one of the only fairly wealthy people who has taken an interest in this dark side of Accutane. As he has personally funded several studies. I guess the possibility of further studies would be somehow contacting him and seeing if he would be interested in looking into the sexual dysfunction/depression related to Accutane. I believe he resides in Ireland.

    Ah thats a shame about Pt-144, viagra works fine for me as I don’t seem to suffer from erectile dysfunction, its more just having absolutely no libido.

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  • #2236
    Profile photo of maxymoon
    maxymoon
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    I have seen numerous forums devoted to this topic which is very alarming. I started taking Roaccutane when I was around 14 years old for my acne. It certainly fixed my acne, but I have always noticed that after treatment my libido is non-existent. I can still get erections but my sexual arousal is never there, I no longer feel viscerally aroused, as I did before I took Roaccutane. I had always thought it may be an underlying hormone problem but its only today that I found forums of people linking Roaccutane usage to diminished libido. This is a serious side effect which is evil. Robbing a young person of their sex drive, debilitates them in a very personal way. It saps them of their life energy and drive, and makes conditions such as anxiety and depression almost inevitable. I am now 24 years old and still have no libido/sex drive. I just wanted to know if anyone has experimented with any drug compounds that have actually helped raise their libido from almost zero to anything noticeable. I experimented with Testosterone Ethanate when I was 21 but again it had no effect on my sex drive, despite taking up to 600mg per week at one point, which is a very high dose.

    Can I ask if your penis grew while you were on accutane and after you stopped taking it? anyone else take accutane during puberty and get a stunted dick or did your dick grow as normal after taking it?

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  • #2241
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    pete
    Keymaster

    Sorry to read about your situation. It seems that more and more people are reading about the issues on this site – especially libido loss.

    Have you noticed yet that our issues are extremely similar to those of PFS patients?  This is the hidden link which holds the key to this problem.

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  • #2244
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    maxymoon
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    please answer has this poison accutane gave anyone a small penis did it stunt it during puberty? I can’t find any answers on this! also how do I go about getting my androgen receptors tested?

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