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Isotretinoin induced sexual dysfunction

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It is becoming increasingly clear that Isotretinoin elicits many anti-androgenic actions; but, for the purposes of this discussion I would like to centre my attention on the seemingly tentative relationship between healthy penile function and dihydrotestosterone. There are three isoforms of 5 alpha-reductase: type 1, type 2 and the newly discovered type 3.

Isotretinoin is a known 5 a-reductase type 1 inhibitor. Isotretinoin inhibits the critically important type 1 isoenzyme which predominates in the skin, brain and liver. It should also be noted that type 1 5 a-reductase transcribes from type 1 to type 2 in human skin genital fibroblasts. So when we argue that only 5 a-reductase type 2 is pertinent to penile erection, and health, we are technically being incorrect, as type 1 effectively transcribes to type 2. Please note that peripherally produced (tissue derived) hormones which are suppressed by Isotretinoin contribute to the circulatory pool in serum.

5 a-reductases also participate in: bile acid biosynthesis, and androgen metabolism and estrogen metabolism. 5 alpha-reductase type 1 inhibition in the brain affects the production of the neurosteroid allopregnanolone. Allopregnanolone inhibition is associated with depression. 5 a-reductase type 1 is crucial to the optimal function of the central nervous system. It is clear that Isotretinoin affects a plethora of hormones and systems within the body, but just the inhibition of the 5 alpha-reductases is cause for concern.

I ask all those who feel that Isotretinoin is definitely not involved in sexual dysfunction to take a close look at the studies listed below:

http://jcem.endojournals.org/content/78/5/1064.abstract

The most pronounced effect was observed in skin biopsies, which lost 80% of their ability to form 5 alpha-dihydrotestosterone (P < 0.001). It is concluded that 13-cis-RA therapy in men with severe nodulocystic acne did not alter gonadal or adrenal functions, but it did induce 1) a highly significant decrease in 5 alpha-dihydrotestosterone formation by skin biopsies; 2) significant decreases in serum 5 alpha-dihydrotestosterone, androsterone glucosiduronate, and 5 alpha-androstan-3 alpha, 17 beta-diol glucosiduronate; and, finally, 3) deviation of the liver androgen 5 alpha- to 5 beta-reduction pathway. The effect of 13-cis-RA treatment on severe acne is consistent with the dramatic decrease in androgen 5 alpha-reduction observed mainly in the skin.
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Hi there

Thanks very much for this. Can I ask, modestm, if you yourself have been afflicted with sexual dysfunction brought about by accutane? Or did something else spark your interest in the matter?

I myself have been suffering with accutane induced sexual dysfunction for almost 4 years now. I too am confident that androgens are implicated in the pathogenesis of this.. However, I told an endocrinologist about accutane being a 5-alpha reductase inhibitor and had DHT tested.. It came back normal. In fact, I think my levels were near the top of the normal range! My testosterone and free testosterone levels are also near the upper part of the normal spectrum. I've tried a number of herbs and found that one in particular, Tongkat Ali, helped somewhat. Tongkat Ali (allegedly) mimics LH in that it stimulates the testicles to produce testosterone. Unfortunately, as we don't know the mechanism of action of accutane it's virtually impossible to say what exactly has caused these effects. I suspect that androgen insensitivity plays a role. However, it appears that, in my case at least, it's not a complete androgen insensitivity - I still display some traits of androgenic activity, eg beard growth. I've found that this complicates matters and, coupled with normal hormone assays, makes it really difficult to convince doctors of ones case. One (sad) advantage of suffering with this for so long is that over time doctors have more empathy for you and are more willing to listen/believe you.

I've read some studies that have shown that high doses of l-carnitine can increase the amount of androgen receptors on skeletal muscle tissue. I don't know if it would exert the same effect in the regions we need to resolve this issue but I'm considering trying some sort of acetyl l-carnitine/alpha lipoic acid therapy next. I'm guessing though that ultimately testosterone replacement therapy will be needed to help fix (to some extent) this in those of us that have been permanently affected.

I feel it's important for other sufferers to share their experiences online, so that people can know they're not alone. I've gone through an awful lot of shit in my life, but I can tell you suffering from sexual dysfunction truly dwarfs everything else. I used to surf the internet for hours on end looking for information about this, which is unfortunately pretty hard to find. When you do find anything it's mainly anecdotes about how someone fears they've developed sexual dysfunction from accutane, with no long-term follow-up. I think it would be useful for sufferers to come together and share their experiences. It would help in finding some sort of way to manage/treat this bitch. I'm inviting anyone suffering from this to PM me, I'd love to hear from you and hopefully I can be of some assistance as well!

Cheers, and to those that are suffering, keep strong!

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Hi there,

I will respond to this post in about 12 hours, as I am pressed for time at the moment.

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Hi there

Thanks very much for this. Can I ask, modestm, if you yourself have been afflicted with sexual dysfunction brought about by accutane? Or did something else spark your interest in the matter?

No, I do not suffer from ED, or sexual dysfunction; but, I have been on Isotretinoin twice, so I know how nasty it can be. I did have some problems (sexual) when I was on it, but they did resolve of there own accord, which is rare. I am very interested in every aspect of acne, because it was big part of my life.

I myself have been suffering with accutane induced sexual dysfunction for almost 4 years now. I too am confident that androgens are implicated in the pathogenesis of this.. However, I told an endocrinologist about accutane being a 5-alpha reductase inhibitor and had DHT tested.. It came back normal. In fact, I think my levels were near the top of the normal range! My testosterone and free testosterone levels are also near the upper part of the normal spectrum.

I am sorry to hear that buddy, but don't doubt that it was caused by the Accutane, because it is clear that that can be an outcome of Isotretinoin usage. Your ideal blood work results are great to have, but they should not be taken as indicating that everything is fine, because things clearly aren't. You should also get your E2 serum measured, and also full thyroid panel and comprehensive cortisol. I suspect something will be amiss with those parameters. Do you have watery semen? Do you have shrunken testicles? It sounds like you would be a welcomed new member at Propeciahelp.

I've tried a number of herbs and found that one in particular, Tongkat Ali, helped somewhat. Tongkat Ali (allegedly) mimics LH in that it stimulates the testicles to produce testosterone. Unfortunately, as we don't know the mechanism of action of accutane it's virtually impossible to say what exactly has caused these effects. I suspect that androgen insensitivity plays a role. However, it appears that, in my case at least, it's not a complete androgen insensitivity - I still display some traits of androgenic activity, eg beard growth.

If your androgens are ideal at the moment, it would not benefit you to attempt to ramp things up through supplementation; most people argue that TRT is a life long commitment.

I've found that this complicates matters and, coupled with normal hormone assays, makes it really difficult to convince doctors of ones case. One (sad) advantage of suffering with this for so long is that over time doctors have more empathy for you and are more willing to listen/believe you.

Again, you should consider joining propeciahelp, and consider seeing one of the doctors mentioned on that site. The overwhelming majority aren't overly sympathetic to those suffering from long term sides.

I feel it's important for other sufferers to share their experiences online, so that people can know they're not alone. I've gone through an awful lot of shit in my life, but I can tell you suffering from sexual dysfunction truly dwarfs everything else. I used to surf the internet for hours on end looking for information about this, which is unfortunately pretty hard to find. When you do find anything it's mainly anecdotes about how someone fears they've developed sexual dysfunction from accutane, with no long-term follow-up. I think it would be useful for sufferers to come together and share their experiences. It would help in finding some sort of way to manage/treat this bitch. I'm inviting anyone suffering from this to PM me, I'd love to hear from you and hopefully I can be of some assistance as well!

Cheers, and to those that are suffering, keep strong!

Again, propeciahelp is the best place for you. There are many on that site that are Accutane victims, so you will be in good company, and amongst people who understand and care.

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Thank you for posting this. Hopefully more people will see that this is an actual problem and that those of that have been affected aren't just imagining it or that it wasn't some coincidence.

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I have also suffered sexual dysfunction and depression since being prescribed isotretinoin over 12 years ago. I also have to agree with the poster that joining propeciahelp is probably your best bet to find others that have experienced continued side effects even after stopping a 5ar inhibitor.

(accutane, propecia, dutasteride, saw palmetto, etc...)

I have dealt with loss of libido, some ED, and emotional blunting since having a crash soon after stopping isotretinoin.

There has been speculation that some form of androgen insensitivity can be caused by 5ar inhibitors. This would explain why some (including myself) are experiencing symptoms of androgen deficiency in spite of normal or even high levels of testosterone, DHT, free testosterone, and normal levels of estrogens. Many of us also have normal beard growth, musculature, etc..

Whatever the case may be, it is my greatest hope that we can all find an answer and a cure some day soon, even if it's by riding the coat-tails of men who developed this problem by taking a baldness drug.

I've had enough of this already.

Good luck.

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Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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ive been suffering from permanent severe sexual side effects from accutane for almost three years with little improvement, and know some that have had permanent severe sexual side effects from accutane for 10+ years. has anyone thought about coming together and trying to file a lawsuit?

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You'd probably be on the right track if you approached the attorneys handling the IBS. Serious ED is very clearly demonstrable.

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You'd probably be on the right track if you approached the attorneys handling the IBS. Serious ED is very clearly demonstrable.

A lawsuit is something that I would encourage anyone who suffered permanent sexual sides from isotretinoin to take part in. There has to be many of us out there. I have heard of this happening to both men and women.

Don't make the mistake I did and let this issue slide!!! Unfortunately, after 12 years I don't think there is any surviving record in my medical history stating that I was prescribed isotretinoin. This burns me up!!! I have spent tens of thousands of dollars going do doctors without finding any one who could really help me. There is no cure for this yet.


Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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I am very sorry to hear that you have suffered from this for so long; I really hope you find some resolution one day, buddy.

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I am very sorry to hear that you have suffered from this for so long; I really hope you find some resolution one day, buddy.
Thanks.


Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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My sexual functioning was normal on accutane. It was obvious that was having some effect on my brain while on treatment, however I only experienced minor problems in concentration. Approximately 1 and half months after finishing my 6 month accutane course on 80mg/day It was like something switched off in my body and I had a significant drop in libido.

This effect has been persistent for the past 4 months. I don't have complete ED, but It is harder to get and maintain erections and much more difficult to get aroused. My facial hair and other secondary sexual characteristics are normal, suggesting that the problem may not be with DHT. I am going to a urologist to get a full panel done on my hormones, however, I fear that my results will come back normal as with other sufferers.

My best guess is it will have to do with a decrease in the number or sensitivity of androgen receptors in the testis and penis. Further it may also have effects on the anterior pituitary and hypothalamus. This may effect LH (Thus effecting testosterone and other androgens) levels. Here is a new review, just recently published on the modes of action of accutane.

Accutane_Modes_of_Action.pdf

This study suggests that there is a potential for isotretinion (accutane) to effect hormone levels, levels of androgen receptors and certain areas of the brain involved in sexual arousal such as the hypothalamus. Dopamine, testosterone and its more potent form DHT are all involved in penile function and sexual arousal. Isotretnion could effect these neurotransmitters/hormones or their respective receptors, causing decreases in libido, erectile function and decreases in vaginal secretions in females.

Luckily I can still get erections and my ED is minor, however my arousal has really suffered. I still get turned on by girls, but as close as much as I did pre-accutane. This side effect was rather shocking, since it happened 2 months after finishing treatment.

I'm thinking to get a PET SCAN of my brain to measure dopamine levels as well as get my androgen receptor number and sensitivity tested (Does anyone know a way to do this?)

Please let me know if any of you have experienced similar problems or have some feedback. Thanks!

Accutane_Modes_of_Action.pdf

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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.


For every person who regrets taking Accutane, God kills a kitten.

Did they ever think that maybe their crazy made them crazy?!?!

Products: labello lip balm, Spectro jel, Dove sensitive skin soap, complex 15 face cream, Fruit of the Earth 100% aloe vera gel, everydayminerals.com makeup, Eufora hair products

MY ACCUTANE LOG

Status: CLEAR (on 10mg/day Accutane 2011) Had mod/sev & cystic acne for 16 years until tane.


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This is not a joke. Although this is a rare side effect, many others are suffering from it. Accutane can potentially be some pretty scary stuff (read the article I posted).

I'm not suggesting that accutane should be taken off the market, as it is very effective. However some people have really gotten screwed with long-term side effects. Accutane works by changing and regulating gene transcription. This can cause many different effects in different people.

I know that the brain and body has a fascinating ability to heal itself and recover on its own. I have tried being positive and saying that it is all in my head (which it probably is b/c of accutane), but I have only gotten slightly better.

I have tried supplements such as L-Arganine, L-Tyrosine, Vitamin B-6, Ginko Biloba and creatine. All of these helped some at first with arousal, but their effect quickly tapered off. I also took milk thistle which is supposed to detox the liver. The first couple of days I took it my sex drive and erections went back to normal, but after a week I lost the effect.

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Hi there

Thanks very much for this. Can I ask, modestm, if you yourself have been afflicted with sexual dysfunction brought about by accutane? Or did something else spark your interest in the matter?

I myself have been suffering with accutane induced sexual dysfunction for almost 4 years now. I too am confident that androgens are implicated in the pathogenesis of this.. However, I told an endocrinologist about accutane being a 5-alpha reductase inhibitor and had DHT tested.. It came back normal. In fact, I think my levels were near the top of the normal range! My testosterone and free testosterone levels are also near the upper part of the normal spectrum. I've tried a number of herbs and found that one in particular, Tongkat Ali, helped somewhat. Tongkat Ali (allegedly) mimics LH in that it stimulates the testicles to produce testosterone. Unfortunately, as we don't know the mechanism of action of accutane it's virtually impossible to say what exactly has caused these effects. I suspect that androgen insensitivity plays a role. However, it appears that, in my case at least, it's not a complete androgen insensitivity - I still display some traits of androgenic activity, eg beard growth. I've found that this complicates matters and, coupled with normal hormone assays, makes it really difficult to convince doctors of ones case. One (sad) advantage of suffering with this for so long is that over time doctors have more empathy for you and are more willing to listen/believe you.

I've read some studies that have shown that high doses of l-carnitine can increase the amount of androgen receptors on skeletal muscle tissue. I don't know if it would exert the same effect in the regions we need to resolve this issue but I'm considering trying some sort of acetyl l-carnitine/alpha lipoic acid therapy next. I'm guessing though that ultimately testosterone replacement therapy will be needed to help fix (to some extent) this in those of us that have been permanently affected.

I feel it's important for other sufferers to share their experiences online, so that people can know they're not alone. I've gone through an awful lot of shit in my life, but I can tell you suffering from sexual dysfunction truly dwarfs everything else. I used to surf the internet for hours on end looking for information about this, which is unfortunately pretty hard to find. When you do find anything it's mainly anecdotes about how someone fears they've developed sexual dysfunction from accutane, with no long-term follow-up. I think it would be useful for sufferers to come together and share their experiences. It would help in finding some sort of way to manage/treat this bitch. I'm inviting anyone suffering from this to PM me, I'd love to hear from you and hopefully I can be of some assistance as well!

Cheers, and to those that are suffering, keep strong!

How do you know it's not a mental thing. Not as in that your thoughts are making it happen, but as in your brain was affected by the accutane. I mean, if it can make people depressed and anxious I'm sure if can affect your libido. You should get a test to see your level of brain activity.

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Welt, that's incredible! I was about to post a link to the same paper about isotretinoin and fox01 in this thread after a guy on propeciahelp posted it; then he told me he found it here. :surprised:

That's not all. I've recently had blood drawn to test Testosterone, Free Testosterone, DHT, and a hormone called Androstanediol Glucoronide (Adiol-G), which is a metabolite of T/DHT.

Here are the results:

Total Testosterone: 729 with a reference range of (250-1100)

Free Testosterone: 168.4 range(35.0-155.0) High

DHT: 63 range(25-75)

Androstanediol Glucoronide: 315 range (260-1500)

The Androstanediol Glucoronide (Adiol-G) level was within range, although very near the low end.

What is interesting is that AFAIK:

- it should have reflected the tested values of Testosterone and DHT. (Should have been on the high-side) It obviously did not.

-Adiol-G is suppressed by isotretinoin.

-The average Adiol-G level in normal healthy males falls within the upper 1/4 of the range

(i.e. If 10 men had this tested, 9 of them should have Adiol-G levels in the upper 1/4 of the range)

-Almost all of the men who developed symptoms very similar to ours after using propecia have had low or very low levels of Androstanediol Glucoronide out of those who had it tested.

I can't say for certain, but I'm pretty sure that the same pattern of low Adiol-G readings with normal Testosterone/DHT readings will emerge from accutane sufferers who have this hormone tested.

This seems to indicate a deficiency of an enzyme (3a-HSD) which converts DHT to 3aAdiol-G.

It may turn out to be of little relevance, but at least it's a place to start.

So, have any other victims of the chemotherapy/acne drug isotretinoin had this tested?

@Beauty Bot, You said "stop blaming a drug that had nothing to do with it & research something that can actually FIX it."

Some of us intend on some day fixing the damage that this drug has caused us. When that day comes you can do what you told the school children who were complaining of accutane-induced depression to do in your wonderful ACCUTANE LOG and "suck it up". In the mean time, I hope you're getting paid well for spreading the word about the safety and efficacy of using chemotherapy to treat acne.

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Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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Hey Dubya, that's interesting what you said about Androstanediol Glucoronide (Adiol-G). I am going to a urologist in a week to have my hormones checked (I will post the results in 2 weeks). I'm convinced that it is a problem with my brain though, which makes sense considering Adiol-G is a neuro-stimulator that has to do with testosterone's effect on the brain.

I think that our symptoms are practically identical. Sudden unexplained drop in libido/arousal 1 to 2 months after finishing accutane, loss of nocturnal erections, orgasms aren't as strong and some erectile dysfunction. I have difficulty getting it up on arousal, usually the only time I can get an erection is through manual stimulation. Luckily my libido is still moderate and I still desire sex, however the site of a naked girl or kissing can no longer get me erect. I'm not in a relationship right now, but I'm thinking cialis might help some with the problem (Although I would hate to get hooked on it, since I'm only 22).

If you could let me know if your ED has gotten any worse and what you have done to deal with it, it would be greatly appreciated. Thanks!

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I think that our symptoms are practically identical. Sudden unexplained drop in libido/arousal 1 to 2 months after finishing accutane, loss of nocturnal erections, orgasms aren't as strong and some erectile dysfunction. I have difficulty getting it up on arousal, usually the only time I can get an erection is through manual stimulation. Luckily my libido is still moderate and I still desire sex, however the site of a naked girl or kissing can no longer get me erect. I'm not in a relationship right now, but I'm thinking cialis might help some with the problem (Although I would hate to get hooked on it, since I'm only 22).

This is basically where I am at with my sexual side effects right now, but things have been slowly getting worse for me over the past couple years.

I would suggest only using ED medications occasionally (once per week or so) if you are still able to get it up without them. Tolerance to PDE5 inhibitors can build up quickly for some people.


Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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Propeciahelp.com is no longer accepting applications for membership from those who have been affected by accutane.

Hopefully everyone understands that since the site seems to be shifting their focus into being a sort of large-scale case study of men with persistent sexual sides after taking finasteride only, they are excluding those who used other anti-androgen medications and supplements to keep the data collected as consistent and relevant to their cause as possible.

I believe that a non-commercialized website devoted specifically to the discussion of permanent sexual, mental, and physical side effects caused by isotretinoin is long overdue.

Seriously, we need a centralized staging area for this rather than sporadic posts scattered across the internet and poorly-kept websites.

If anyone reading this is interested in helping to develop such a website then please PM me or reply to this post so we can begin.

Thank you.

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Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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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

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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

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