Hello friends! I have been following your thread for quite sometime and would like to post my experience with persistent isotretinoin side effects and some research I have collected on why these side effects might occur.

I will give you a quick rundown of my experience:

Sept 2010 my dermatologist prescribed me isotretinoin for my persistent acne

I experienced the typical side effects --- All over dryness: Dry lips, eyes, skin, etc.

Some more concerning side effects that developed a bit later during my course were --- fatigue, trouble concentrating, forgetfulness, minor brain fog and occasionally running into walls.

These side effects were somewhat concerning to me, but my dermatologist assured me they were common and will go away when treatment is completed.

These side effects are well documented in the literature, as isotretinoin has been shown to inhibit neurogenesis in the hippocampus [1] and slow down activity in the orbitofrontal cortex [2].

[1]: http://www.pnas.org/...01/14/5111.full

[2]: http://ajp.psychiatr...t/162/5/983.pdf

These side effects were fairly concerning so I quit taking the drug in March 2011. I was pretty convinced they would go away and they mostly resolved within weeks of stopping the medication.

However, my real problems didn't start until approximately 1.5 months after discontinuing the drug.

I woke up one morning and everything felt a bit off --- brain felt somewhat disconnected from reality, trouble experiencing emotions, sexual difficulties, some fatigue --- It was if a part of my brain had crashed (numbed) and stopped working.

I didn't think much of it at the time, I just thought I was having an 'off day'. These symptoms started to concern me as they got slightly worse and persisted for several weeks.

Note: A couple months preceding the crash I became extremely horny, where I thought about sex every second of the day, it was so bad it was affecting my day life because I could not concentrate on anything else (My physician said he saw something similar with cocaine addicts right before they crashed).

My symptoms shortly after the crash:

-Emotional Anhedonia (Everyday was a struggle --- many days I felt like I just wanted to die)

-Brain felt slightly disconnected from reality (Almost felt like I had a constant hangover --- my head constantly felt numb and tingly)

-Near complete loss of sexual function --- loss of nocturnal and spontaneous erections, loss of orgasmic sensation, zero libido/desire, reduced/watery ejaculate, premature ejaculation, shriveled penis and feeling of disconnection between brain and penis.

-Sleeping problems, brain had difficulty going into deep sleep --- It was like my brain was struggling to repair itself, I would sleep for about an hour and wake up with extreme bouts of anxiety when my brain realized it could not go into REM sleep.

Luckily, the most severe side effects only persisted for about 4 months after treatment (Maybe due to a chance recovery or the large amount of vitamins/herbs etc I was taking to try and overcome it)

I recovered from --- Emotional Anhedonia, brain feeling disconnected from the world and sleeping problems (Approx. Sept 2011)

Some sexual symptoms also subsided --- brain and penis now feel somewhat connected, nocturnal erections returned, ejaculation quality somewhat better and premature ejaculation somewhat better (after using breathing techniques).

Symptoms I still have:

-loss of spontaneous erections, little orgasmic sensation, zero libido/desire (my brain feels asexual most of the time), some PE.

Although these side effects are not listed on the medication, there are thousands of stories of people who have experienced severe persistent mental and sexual side effects (Both men and women). A simple google search for accutane + sexual side effects yeilds 4,240,000 results (see attachment isotretinoin side effect reports for reference). Many people tell their stories online --- Some have had severe neurological and sexual problems that persisted 15+ years after use (Maybe this drug isn't as safe as many dermatologists make it out to be). Based on the stories alone I would estimate that anywhere from 10,000(lowest estimate) to 50,000+ people around the world suffer from severe persistent sexual side effects after isotretinoin use. Whereas 100,000 (Lowest) to 500,000+ people have experienced at least one persistent side effect after taking the drug. These figures are large, but still rare considering that isotretinoin (accutane) has been given to over 10million patients world wide.

Dr. Kevin Pezzi M.D. claims to have talked with over 100 patients who have suffered from the most severe forms of 'isotretinoin induced sexual dysfunction'. In his book The Science of Sex he talks about the sexual side effects of isotretinoin, potential ways to treat them and his own struggle with persistent sexual dysfunction. On his website ( http://www.erbook.net/accutane.htm ) he claims to have submitted several reports to the FDA about these effects, however nothing as been done by the FDA.

Near identical persistent mental and sexual side effects have been observed in people who have taken finasteride, propecia, proscar and dutasteride (The hair loss drugs)

It is estimated that 10,000+(low estimate) men worldwide suffer permanent sexual dysfunction as a result of the drugs (hear thousands of their stories at www.propeciahelp.com)

Recent evidence suggests that isotretinoin [3][4][5] and finasteride [6][7][8][9] work by permanently altering gene expression through androgen receptor mediated activity. Bodo C. Melnik, a genetist, goes into great detail how isotretinoin changes DNA regulation and how these regulatory changes can contribute to several of the persistent side effects [3].

[3] http://www.fly-bay.n...MelnikDE3-3.pdf

[4] http://www.ncbi.nlm..../pubmed/7714084

[5] http://www.ncbi.nlm....pubmed/21103844

[6] http://onlinelibrary...2255.x/abstract

[7] http://www.ncbi.nlm....pubmed/21386657

[8] http://onlinelibrary....21480/abstract

[9] http://content.karge....asp?Doi=280586

A meta-analysis study done by the moderators of www.propeciahelp.com (The 5ARI-Withdrawal Syndrome Theory) with the help of several physicians --- Michael S. Irwig MD, Alan Jacobs MD, Irwin Goldstein MD and John Crisler MD reveals that the persistent cognitive and sexual side effects of finasteride and isotretinoin may be due to androgen resistance brought about by changes in gene regulation. When the 5-alpha reductase enzyme is inhibited in the brain and other parts of the body, persistent androgen resistance may occur.

Further, Dr. Irwin Goldstein, Editor-In-Chief of the Journal of Sexual Medicine warns against the persistent sexual and cognitive side effects of 5-alpha reductase inhibitors such as finasteride, dutasteride and isotretinoin ( http://onlinelibrary...2368.x/abstract )

Several lawsuits have also been filed against the makers of isotretinoin ( http://jazlowiecki.com/blog/ ) and propecia ( http://www.propecialawsuitattorney.com )

for their persistent sexual side effects.

As a side note: Persistent sexual dysfunction is also seen after SSRI use [10][11][12]. However this is caused by a different mechanism, a change in the 5-HTP axis of the brain which can sometimes be reversed by dopamine agonists.

[10] http://onlinelibrary...0630.x/abstract

[11] http://www.primaryps...?articleid=1479

[12] http://en.wikipedia....ual_dysfunction

I may never fully recover to my state prior to taking isotretinoin, but I have made great progress over the past 6 months and hope to get even better as time passes. My goal is to treat my side effects using a multifaceted approach:

1. Psychologically --- I want to try using psychotherapy to help push my brain back into equilibrium. I view psychology and neurology as somewhat interchangeable, as the chemistry of the brain influences psychology and psychology influences the chemistry of the brain and gene transcription. In short, I think that psychotherapy may be able to help retrain my brain.

2. Biologically --- Most physicians have been reluctant to believe me and label me as depressed, psychologically disturbed or worse, accuse me of making up my symptoms. Luckily, I have recently found an M.D. who was willing to look at my research and help me develop a treatment plan. I got full hormone and neurotransmitter panels and am still waiting for the results. Androgen resistance or not, I think my main problem is some of my dopamine and norepinephrine receptors in my brain have been pushed out of equilibrium [13]. My doctor has seen this before in cocaine addicts and we think certain Parkinson drugs and GABA agonists may be able to push my receptors back into their default state.

[13] http://www.biomedcen...44-859X-8-2.pdf

3. Nutritionally --- Vitamins, Herbs, antioxidants, eating healthier, etc

4. Other therapies --- Maybe try neurofeedback, transcendental meditation, transcranial magnetic stimulation (TMS), etc.

Thank you for listening to my story.

Keep in mind that as many of these side effects may have been brought on by epigenetic changes in gene regulation, proper nutrition (diet high in B vitamins, Strong antioxidants, fruits and vegetables), a good state of mind and environmental factors (exercise) all determine how our genes are regulated.

Very interesting, Welt.

Although it sounds like you could be causing yourself anxiety by over-analyzing yourself (and drawing some conclusions/ making connections that I don't quite think are realistic), I do respect and understand the fact that you really want to feel normal again.

I'm really thrilled for you that you've found a doctor who is taking you seriously and looking into some of the potential Accutane-related causes of the problems you've experienced. This could be really groundbreaking for us if it helps you feel better, so please let us know how your progress with this doctor goes, okay??? [Edited image out]

----------

As for my food allergies, I can always go back to be re-tested in the future but for now, avoiding the foods I've been told to avoid is good enough for me. I can worry about the future at that time.

I wonder what the connection would be between Accutane and allergies, if one does exist. All the allergist would tell me is that "Well, Accutane is a drug that effects every part of your body...". He did say, however, though, that 60% of the immunological system is in and around the area of the digestive system.

I'm pretty sure my previously mentioned constipation has gotten worse, and developed into irritable bowel syndrome. Oh the joy Accutane brings to my little soul!

I can't even remember the last time I had a proper crap.

I now get 'urges' to go, and then piss out of my bum. It's great fun!

I know I have anxiety, but do you guys get the feeling that I do, which is 'Time is running out'.

I keep freaking out that something is going to happen before I see the nutritionist on Tuesday next week.

I feel like I need that appointment right now.

Interesting about the allergies though, if not more bloody confusing.

Chico, are you saying it is a good idea to have stuff like ginger though, even if you are 'allergic' to it?

I personally don't know if I get any allergic reactions due to certain things I have.

Like jmsil though, Watermelons seem to affect me. I only started eating them this year, and thought 'Fuck yeah. Tasty!' but have noticed that my stomach seems to hurt after eating them.

I spoke to my Dad for the first time in a few weeks today.

My parents are divorced and I don't really see him that much.

He always seems happy, and busy running his own business.

He called me and asked how I was.

I couldn't lie, plus his call woke me up..

I thought it was early, but it was 9.30am.

I need to get up earlier, but it feels like I don't have a purpose anymore.

He understands, and believes what I've told him, but again, what can he do or say to change anything?

He says I can't let it get the best of me, and I need to do what I want to do, in terms of a job.

He also said that 'I'm sure it's much easier for me to say, than it is for you to do it' but I spose he's right.

But where do I begin?

I want to be a musician, on stage, having people sing my songs and enjoying it, but with the anxiety and insecure feelings I have?

I can't even feel comfortable with my girlfriend looking at me sometimes?

Do you remember I said I'd applied to be a model?

That's kicking off soon, but I don't feel up to it and wish I'd of saved the 132 I paid to sign up.

I was on a rare high when I applied, and when someone called me, I just went along with it.

Man, I need a miracle right now.

And, I should really get to bed.

Was up late (2am) last night, which won't help anything.

Night

Hey everyone! Glad to see that this topic is becoming more active! [Edited image out]

Indigo, have you tried taking probiotics? They do extraordinary things in patching up your digestive system with billions of beneficial gut flora. I'm telling you, after taking them for a month I was definitely, er, eliminating better. [Edited image out] You only have to take them for a short period of time as well, not indefinitely -- so it's worth a shot I reckon. [Edited image out]

The sad reality is that empathy can only do so much in circumstances like this; that's why we can't really relate to people personally in real life but seamlessly over the internet. Lemme tell you, though; the fact that you've eliminated grains and dairy has placed you far, far above the vast majority of people in our society on a nutritional level. You may feel crazy, but the fact that this topic alone has over 9000 (did NOT mean to say that, WOW. I just lol'd at that unfortunate meme mention) views just goes to show that you're hardly experiencing an isolated case.

My sympathy for your girlfriend, it's wonderful to hear that her mother fought through it; I'm sure she'll tackle her fears in time with you fighting your own issues with Accutane. Just remember that cancer doesn't just happen overnight; it develops insidiously over years of countless stressors to you as a person. I'm not downplaying the severity of cancer or any other illness by any means, but modern societies clearly promote the weakening of our bodies and minds to the point where it is life-threatening.

Don't feel pressured, and don't even think about leaving her or anything drastic like that -- I'm saying this to you as a friend from anecdotal experience. I was going out with a girl for 2-3 years before I started suffering from sleep problems which ended up killing me from the inside out. I broke up with her for the very reasons that you mentioned -- I wanted to be a good boyfriend and show how much she meant to me, but how could I possibly look after her if I couldn't even look after myself? Our relationship was also long distance which didn't help matters much, but on the flip side she didn't physically see me looking like death that often either.

She's in a relationship now with someone else (which is what I wanted in a way; for someone else to be there for her when I couldn't be), but I've already explained everything to her and she felt incredibly guilty for not knowing that. I reassured her about it all being my fault and the regrets I had, but the point is I laid everything bare so she could know the truth.

Long story short, I'm gonna go visit her soon and I'm happy enough for her to still be one of my closest friends who I have an immensely deep connection with. If she's happy, I'm happy; being completely honest about why I ended things between us also granted me catharsis, and I've been completely successful in reigniting our relationship without it being romantic after a year of complete social exclusion from this young lady (this was a part of my genius plan; "Maybe if I don't talk to her, things would work out!" Biggest idiot ever, but I've lived and learned!).

Overall, things are all working out beautifully despite the catastrophic circumstances of the past. I'm going to be 19 in December, and I ended things between her and I when I was around 17 or so. I'm still young, so I'm probably still a typical teen when I say this, but I told her the very same thing I'm about to say here; I love her. She loved me back, and maybe it was a typical teen drama but I've never felt as strongly as I have for her than I have for anyone else. Her being in a relationship doesn't bother me in even the most minute manner -- the fact that we're still talking to each other daily is enough for me. I no linger on the "what could have been"'s and now concentrate on the "what can be"'s. I'm telling you, I'm motivated as hell and nothing can get in the way of my efforts; the same applies to everyone here on our journey to recovery.

I love you too, man! Make sure your girlfriend doesn't read this or she'd think that's something's up, lol! BEFORE the mandatory homo comments start pouring in, I respond to you all with THIS!

Andrew; I think that Accutane is an immuno-suppressant, which means exactly what it sounds like. If it can cause adrenal fatigue as well somehow, that would increase the possibility of developing senstivities or allergies to different things as well. It's all about strengthening your immune system and teaching it to stop over-reacting to harmless substances.

Chico Esposito; I eat carrots VERY often (almost daily) and don't seem to suffer any noticeable exaggeration of side-effects, but if I take even one tablet of a multi-vitamin containing Vitamin A, there's a very noticeable increase in symptoms. Real food doesn't seem to affect me, but supplemental forms of the vitamin definitely do. I wouldn't really say that Accutane directly increases your susceptibility to allergies, but it can indirectly if it comprimises your immune system for a while.

It's absolutely imperative that you have your diet 100% dialed in if you want to make any significant progress from any illness, let alone from the damage caused by Accutane. Get that sorted out as the foundation of your health and you're well on your way to recovery through more specialised supplementations and regimes.

Welt, it's good to have you on board! Thanks for sharing your experience with us; I've read the entire thing and am very intrigued with your findings. I love epigenetics -- as you said, our genes are reprogrammed by the foods we eat, the environment we are exposed to and the thoughts we consciously conjure and ruminate over as human beings every single second of our lives.

Keep your heads up, peeps! [Edited image out]

Indigo, I think seeing a counselor/therapist who can do some CBT counseling (cognitive behavioural therapy) with you.

Honestly, please do it... it's worth a shot, and even if you don't like your first counselor, you can always switch to one you are more comfortable with. CBT and counseling deal with EVERY sort of issue... you would be no weird case that they hadn't seen before... quite the opposite. Please do yourself a favour and give it a shot... having your mind and emotions under control is 90% of the game, and I can tell you tend to "catastrophize" and have a lot of black and white thinking.

Not judging, just being there for you. You remind me a lot of myself!

And you have nothing to be ashamed of, nothing to apologize for. You have every right and reason to be going through a very difficult time. I know you don't feel like it's going to get better but I promise you it will. It really will! Seeing a therapist could help you to realize this.

Take care buddy, and let me know what you think, eh?

I would have to agree, gut/inflammation/microflora imbalance/fungal issues definitely have a role to play in my side effects it would seem.

I took Accutane for one week, and at the end of that week I was shitting blood and malabsorbed fat (sorry for the visual).

Months after, my toilet visits declined to once weekly visits consisting of an incredibly sudden urge and lots of diarrhoea. This coincided with us getting our bathroom re-fitted. Not fun.

I would say this is much improved now, I generally go once or twice a day, although the quality (quality?) isn't always brilliant.

A few things have helped. I've eating been eating a paleo diet for about a year now (no dairy/no grains/no refined sugar) and I would say it has definitely helped. It has noticeably helped in the acne department that Accutane decided to leave untouched, and I would say it probably would have cleared me if I had known about it before the drug. How unfortunate.

I also drink home-made water kefir. I don't generally trust the store bought pro-biotics to be actually alive when you get them. Fermented foods/drinks seem much more beneficial. Sometimes if I drink too much of this daily, my stools become quite loose. Drinking it also seems to have a temporary beneficial effect on my rosacea (another side effect). I am noticeably paler a few hours if I drink a glass.

Strange as it sounds, I have also took to pouring water kefir over my head at night in the shower and washing it the next morning, hoping it would help with my hairloss. The shedding hasn't stopped, but it has markedly reduced the itching and inflammation of the scalp. Some days, especially after drinking alcohol, my scalp would hurt so much, it would be a pain to wash my hair. Hopefully if I keep this up, it may have some effect.

Going forward to try and heal my gut I think I will try Kombucha. Kombucha is another fermented drink and has many things that water kefir does not contain, such as B-vitamins and even the Gluconic acid that was mentioned early in this thread. Here is a link to the things in contains (scroll down to the list).

Digestive enzymes (to make sure I'm breaking down and absorbing vitamins/minerals), Glutamine (Heal Leaky Gut) and anti-fungals are also on my list of things to try in the future. I may even go ahead and combine a high quality store-bought pro-biotic (like this one , great reviews) with my fermented drinks.

And I agree Spy, brilliant to see so many (knowledgeable) people getting their heads together and discussing. I look forward to any test results people may get.

Goodnight.

I agree completely with Milano's recommendations. I personally took my probiotic as a supplement, but if I found / made my own to consume I would have easily picked that. I still received great benefits, but if you can make / find any probiotics in food form, go for that!

+Infinity on the Paleo diet (Mark's Daily Apple's food is centred around this, although it's less strict about certain groups such as dairy and also focuses more on your entire lifestyle instead of the food you eat alone). Digestive enzymes, amino acids and anti-fungals are all excellent in their own right. I haven't had any fungal issues but am very aware of candida and such. Coconut oil is a miracle in plenty of regards -- it has anti-fungal properties,boosts your thyroid, regulates your temperature and can be used in pretty much every meal (that's what I do and I can't go without it!).

I also read Mark's Daily Apple, it is a great blog. I'd recommend it to anyone thinking of Paleo.

I've been trying to incorporate coconut oil into my meals for some time down. It is quite difficult as I eat a lot of solid proteins and find it hard to fit it in somehow. I am thinking of buying/making some soups and putting some into those. I'm fully aware of it's many benefits, it seems you can't really go wrong with it. I realise I will probably need to take it slowly if I have fungal issues. I have started cooking with it though and the smell is tremendous.

Another useful blog is [Removed] . It's run by a doctor who believes the gut/micro flora and inflammation plays a major role in pretty much all long term illness. It can get a little too scientific at times, but he has discussed hairloss and the side effects of propecia recently.

If people are eating coconut oil or coconuts in general they need to space them from eating carbs. When you eat fat you want to eat it on it's own or with a salad. Fruits and complex carbs like grains / root veg should not be eaten with fats, it's harder for the body to digest. I tend to eat fruits in the morning, vegetables, pulses, beans in the afternoon and fats at night. It changes, it could be a big salad in the afternoon, but i try to keep fats apart as they absorb much better that way. The worst is fruit and fat together, they don't mix at all.

To "the spy" - i did a intolerance test that ranged from 1-4....1 being a slight intolerance, 4 being a full on intolerance. Milk, Cheese and Eggs were all a 3, Carrots were a 1. You absolutely right, people that have accutane side effects don't react as severely to beta carotene as they do to retinol. But crazy high beta carotene foods like carrots, sweet potato, chlorella, spirulina and stuff like that can cause some problems with people that have accutane side effects.

It's all down to the gallbladder baby : ) get that bile flow back, get those kidneys filtering, pump up your adrenals and clean out the stagnation of the blood and lymph, and get that accutane out of your body.

Thanks chico - I'll give the coconut oil another go, as I was eating fruit (smoothie) with it before...

Hello friends! I have been following your thread for quite sometime and would like to post my experience with persistent isotretinoin side effects and some research I have collected on why these side effects might occur.

I will give you a quick rundown of my experience:

Sept 2010 my dermatologist prescribed me isotretinoin for my persistent acne

I experienced the typical side effects --- All over dryness: Dry lips, eyes, skin, etc.

Some more concerning side effects that developed a bit later during my course were --- fatigue, trouble concentrating, forgetfulness, minor brain fog and occasionally running into walls.

These side effects were somewhat concerning to me, but my dermatologist assured me they were common and will go away when treatment is completed.

These side effects are well documented in the literature, as isotretinoin has been shown to inhibit neurogenesis in the hippocampus [1] and slow down activity in the orbitofrontal cortex [2].

[1]: http://www.pnas.org/...01/14/5111.full

[2]: http://ajp.psychiatr...t/162/5/983.pdf

These side effects were fairly concerning so I quit taking the drug in March 2011. I was pretty convinced they would go away and they mostly resolved within weeks of stopping the medication.

However, my real problems didn't start until approximately 1.5 months after discontinuing the drug.

I woke up one morning and everything felt a bit off --- brain felt somewhat disconnected from reality, trouble experiencing emotions, sexual difficulties, some fatigue --- It was if a part of my brain had crashed (numbed) and stopped working.

I didn't think much of it at the time, I just thought I was having an 'off day'. These symptoms started to concern me as they got slightly worse and persisted for several weeks.

Note: A couple months preceding the crash I became extremely horny, where I thought about sex every second of the day, it was so bad it was affecting my day life because I could not concentrate on anything else (My physician said he saw something similar with cocaine addicts right before they crashed).

My symptoms shortly after the crash:

-Emotional Anhedonia (Everyday was a struggle --- many days I felt like I just wanted to die)

-Brain felt slightly disconnected from reality (Almost felt like I had a constant hangover --- my head constantly felt numb and tingly)

-Near complete loss of sexual function --- loss of nocturnal and spontaneous erections, loss of orgasmic sensation, zero libido/desire, reduced/watery ejaculate, premature ejaculation, shriveled penis and feeling of disconnection between brain and penis.

-Sleeping problems, brain had difficulty going into deep sleep --- It was like my brain was struggling to repair itself, I would sleep for about an hour and wake up with extreme bouts of anxiety when my brain realized it could not go into REM sleep.

Luckily, the most severe side effects only persisted for about 4 months after treatment (Maybe due to a chance recovery or the large amount of vitamins/herbs etc I was taking to try and overcome it)

I recovered from --- Emotional Anhedonia, brain feeling disconnected from the world and sleeping problems (Approx. Sept 2011)

Some sexual symptoms also subsided --- brain and penis now feel somewhat connected, nocturnal erections returned, ejaculation quality somewhat better and premature ejaculation somewhat better (after using breathing techniques).

Symptoms I still have:

-loss of spontaneous erections, little orgasmic sensation, zero libido/desire (my brain feels asexual most of the time), some PE.

Although these side effects are not listed on the medication, there are thousands of stories of people who have experienced severe persistent mental and sexual side effects (Both men and women). A simple google search for accutane + sexual side effects yeilds 4,240,000 results (see attachment isotretinoin side effect reports for reference). Many people tell their stories online --- Some have had severe neurological and sexual problems that persisted 15+ years after use (Maybe this drug isn't as safe as many dermatologists make it out to be). Based on the stories alone I would estimate that anywhere from 10,000(lowest estimate) to 50,000+ people around the world suffer from severe persistent sexual side effects after isotretinoin use. Whereas 100,000 (Lowest) to 500,000+ people have experienced at least one persistent side effect after taking the drug. These figures are large, but still rare considering that isotretinoin (accutane) has been given to over 10million patients world wide.

Dr. Kevin Pezzi M.D. claims to have talked with over 100 patients who have suffered from the most severe forms of 'isotretinoin induced sexual dysfunction'. In his book The Science of Sex he talks about the sexual side effects of isotretinoin, potential ways to treat them and his own struggle with persistent sexual dysfunction. On his website ( http://www.erbook.net/accutane.htm ) he claims to have submitted several reports to the FDA about these effects, however nothing as been done by the FDA.

Near identical persistent mental and sexual side effects have been observed in people who have taken finasteride, propecia, proscar and dutasteride (The hair loss drugs)

It is estimated that 10,000+(low estimate) men worldwide suffer permanent sexual dysfunction as a result of the drugs (hear thousands of their stories at www.propeciahelp.com)

Recent evidence suggests that isotretinoin [3][4][5] and finasteride [6][7][8][9] work by permanently altering gene expression through androgen receptor mediated activity. Bodo C. Melnik, a genetist, goes into great detail how isotretinoin changes DNA regulation and how these regulatory changes can contribute to several of the persistent side effects [3].

[3] http://www.fly-bay.n...MelnikDE3-3.pdf

[4] http://www.ncbi.nlm..../pubmed/7714084

[5] http://www.ncbi.nlm....pubmed/21103844

[6] http://onlinelibrary...2255.x/abstract

[7] http://www.ncbi.nlm....pubmed/21386657

[8] http://onlinelibrary....21480/abstract

[9] http://content.karge....asp?Doi=280586

A meta-analysis study done by the moderators of www.propeciahelp.com (The 5ARI-Withdrawal Syndrome Theory) with the help of several physicians --- Michael S. Irwig MD, Alan Jacobs MD, Irwin Goldstein MD and John Crisler MD reveals that the persistent cognitive and sexual side effects of finasteride and isotretinoin may be due to androgen resistance brought about by changes in gene regulation. When the 5-alpha reductase enzyme is inhibited in the brain and other parts of the body, persistent androgen resistance may occur.

Further, Dr. Irwin Goldstein, Editor-In-Chief of the Journal of Sexual Medicine warns against the persistent sexual and cognitive side effects of 5-alpha reductase inhibitors such as finasteride, dutasteride and isotretinoin ( http://onlinelibrary...2368.x/abstract )

Several lawsuits have also been filed against the makers of isotretinoin ( http://jazlowiecki.com/blog/ ) and propecia ( http://www.propecialawsuitattorney.com )

for their persistent sexual side effects.

As a side note: Persistent sexual dysfunction is also seen after SSRI use [10][11][12]. However this is caused by a different mechanism, a change in the 5-HTP axis of the brain which can sometimes be reversed by dopamine agonists.

[10] http://onlinelibrary...0630.x/abstract

[11] http://www.primaryps...?articleid=1479

[12] http://en.wikipedia....ual_dysfunction

I may never fully recover to my state prior to taking isotretinoin, but I have made great progress over the past 6 months and hope to get even better as time passes. My goal is to treat my side effects using a multifaceted approach:

1. Psychologically --- I want to try using psychotherapy to help push my brain back into equilibrium. I view psychology and neurology as somewhat interchangeable, as the chemistry of the brain influences psychology and psychology influences the chemistry of the brain and gene transcription. In short, I think that psychotherapy may be able to help retrain my brain.

2. Biologically --- Most physicians have been reluctant to believe me and label me as depressed, psychologically disturbed or worse, accuse me of making up my symptoms. Luckily, I have recently found an M.D. who was willing to look at my research and help me develop a treatment plan. I got full hormone and neurotransmitter panels and am still waiting for the results. Androgen resistance or not, I think my main problem is some of my dopamine and norepinephrine receptors in my brain have been pushed out of equilibrium [13]. My doctor has seen this before in cocaine addicts and we think certain Parkinson drugs and GABA agonists may be able to push my receptors back into their default state.

[13] http://www.biomedcen...44-859X-8-2.pdf

3. Nutritionally --- Vitamins, Herbs, antioxidants, eating healthier, etc

4. Other therapies --- Maybe try neurofeedback, transcendental meditation, transcranial magnetic stimulation (TMS), etc.

Thank you for listening to my story.

Keep in mind that as many of these side effects may have been brought on by epigenetic changes in gene regulation, proper nutrition (diet high in B vitamins, Strong antioxidants, fruits and vegetables), a good state of mind and environmental factors (exercise) all determine how our genes are regulated.

 

Welt-

WHAT A GREAT POST!!!

Also, 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

Hello everyone!

Even though my dick doesn't work so well during the day, I actually feel quite optimistic and full of life.

Although my libido is pretty much zero and I sometimes can't get an erection for the life of me, I almost feel on top of the world after recovering from emotional anhedonia, sleeping problems and my brain feeling disconnected from reality.

Andrew: I'm not trying to draw any rash conclusions, I'm just stating what is out there in the scientific literature and listing my experience in the most objective way possible to potentially help others.

I think it is important to understand what isotretinoin is doing to our bodies on a biological level. Vitamin A serves as a strong anti-oxidant at normal levels, however high levels of its products (retinol, etc) can cause persistent changes in gene regulation.

The way accutane works is by altering androgen mediated activity, leading to androgen resistance in the sebaceous glands and for some people in the brain, liver, bones, eyes and other areas of the body.

Isotretinoin and FoxO1 A scientific hypothesis

http://www.fly-bay.n...MelnikDE3-3.pdf

Effect of oral isotretinoin treatment on skin androgen receptor levels in male acneic patients.

http://www.ncbi.nlm..../pubmed/7714084

Isotretinoin, finasteride, propecia, proscar and dutasteride all affect androgen mediated activity through inhibition of the 5AR enzyme that converts testosterone into the more potent DHT. This temporary inhibition has been hypothesized to cause gene regulation changes, altering androgen receptor function.

This hypothesis is also supported by Dr. Kevin Pezzi M.D. (The Science of Sex) and several other people who have temporarily recovered by resensitizing their cells to androgens using DHT inhibitors such as finasteride (Unfortunately I can't find the links at the moment). However I would HIGHLY advise against this because finasteride and propecia can also make side effects worse (refer to www.propeciahelp.com).

This change can cause problems where the 5AR enzymes are most active --- in the liver, the brain (depression, emotional anhedonia, libido/erectile problems), bones (osteoporosis), genital tissue, etc. These can also cause auto immune disorders such as IBS, arthritis and allergies. The moderators of www.propeciahelp.com have linked all of these together and they are working with scientists all around the world to test and attempt to come up solutions for these ideas. I HIGHLY SUGGEST YOU ALL DO THE SAME!!!! SOME PEOPLE HAVE BEEN SUFFERING FROM THESE MENTAL AND SEXUAL SIDE EFFECTS FROM ISOTRETINOIN FOR 15+ YEARS AND THEY HAVE ONLY BEEN BROUGHT TO LIGHT IN THE PAST YEAR BECAUSE THE PEOPLE AT PROPECIAHELP HAD THE GUTS TO SPEAK UP!!!!! MAKE SURE YOU HAVE A VOICE!!! TALK TO DOCTORS AND SCIENTISTS AROUND YOUR UNIVERSITY. SHOW THEM THE RESEARCH I HAVE GIVEN YOU! I'M CALLING ALL ISOTRETINOIN USERS TO SPEAK UP! MOST OF US HAVE DONE A VERY POOR JOB OF GETTING OUR VOICES OUT TO THE SCIENTIFIC COMMUNITY!!

FURTHER: BECAUSE OF ALL THE PEOPLE MAKING NOISE ABOUT PROPECIA THEY HAVE BEEN FORCED TO LIST PERMANENT ERECTILE DYSFUNCTION AND PERSISTENT MENTAL SIDE EFFECTS ON PROPECIA'S LABEL. KEEP BUGGING THE FDA WITH YOUR SIDE EFFECTS AND THEY WILL BE FORCED TO DO SOMETHING ABOUT IT!

My goal right now is to help bring awareness. I am currently applying to medical school and I am composing my story with links to thousands of people who have suffered from our condition. I am submitting this story to most of the medical schools I am applying too. Some of them may think I'm crazy and it will definitely raise a few eyebrows with the admission committees, but they would have to be extremely arrogant to ignore the overwhelming evidence. This may hurt my application, but I think It will make the top dogs of some of the finest research institutions more aware of our problems. I'm sending my story with my application to 30+ different schools. Some of these schools have some of the finest gene therapy and neurology programs in the world, so if I can just make one of them more aware then I have succeeded. I'm also applying and submitting my story to all the PFS (Post finasteride syndrome) medical schools such as George Washington U (Dr. Irwig) and University of Boston (Dr. Traish). I'm very Interested to hear what they will say!

Lastly a note of reassurance: Most of these side effects are reversible (but often times very difficult) and there are several propecia and isotretinoin users who have had resolution of their side effects overtime. I am a living example of someone who has recovered/overcome some of the most severe mental sides.

I plan on spending the next few years investigating these problems aggressively throughout my time in medical school and through my studies in integrative medicine.

I urge you all to get up and take a stand as I am!

Got an email from the hair analysis lady - unfortunately she emailed me Tuesday and I've only just noticed.. anyway - she's realised that some other person (I wonder who that could be...) posted their hair a few days earlier and even she is interested in comparing the results!

Indigo - I know how you feel - I'm desperate to ge these hair analysis results back for the allergies. I know you said you can't wait till next week to see the nutritionist but you should have the hair analysis results back by then and I'm sure that will really help the nutritionist come up with an eating plan.

Indigo, I think seeing a counselor/therapist who can do some CBT counseling (cognitive behavioural therapy) with you.

Honestly, please do it... it's worth a shot, and even if you don't like your first counselor, you can always switch to one you are more comfortable with. CBT and counseling deal with EVERY sort of issue... you would be no weird case that they hadn't seen before... quite the opposite. Please do yourself a favour and give it a shot... having your mind and emotions under control is 90% of the game, and I can tell you tend to "catastrophize" and have a lot of black and white thinking.

Not judging, just being there for you. You remind me a lot of myself!

And you have nothing to be ashamed of, nothing to apologize for. You have every right and reason to be going through a very difficult time. I know you don't feel like it's going to get better but I promise you it will. It really will! Seeing a therapist could help you to realize this.

Take care buddy, and let me know what you think, eh?

 

Hey man.

It could help me, but I have been before.

I first did a group therapy course which was maybe 6 or 8 weeks.

Did not help one bit.

The other people in the group just annoyed me because they had such small issues (i.e. getting anxious about their daughter's wedding and what to wear).

Despite my eyes looking raw red when I saw them in the mirror and feeling them sting, I spoke about that getting on my nerves.

They all told me they couldn't tell, which I know was just a reassuring lie.

I then saw the group counsellor individually and that was a waste of fucking time.

She was probing with ridiculous questions.

'Why does it matter if you have these problems?'

'Because I can't be happy with this going on.'

'Why does it matter if your not happy?'

'Well I guess I'll end up trying to kill myself or something.'

'What does it mean if you kill yourself?'

Well, that fucking fixes everything! I gave up at that point. Perhaps it was just the person, but I really can't be fucked with them. I'll stick to the books and be my own guide.

I called Suicide hotline (Samaritans) today.

Some old dude answered, so I hung up.

As if I'm going to have my problems fixed my him.

I really just wanted to see what advice they offered, but I have also been feeling ultra low.

I just really feel exhausted. I got 10 hours of sleep and still, 2 hours after waking, feel like fucking shit.

Pardon the French, I've just had it up to here (*raises arm high*) with this.

I hate the mess that my life has become.

Bleurghhhh

But thanks for trying to help.

I think I'm past help now.

Got an email from the hair analysis lady - unfortunately she emailed me Tuesday and I've only just noticed.. anyway - she's realised that some other person (I wonder who that could be...) posted their hair a few days earlier and even she is interested in comparing the results!

Indigo - I know how you feel - I'm desperate to ge these hair analysis results back for the allergies. I know you said you can't wait till next week to see the nutritionist but you should have the hair analysis results back by then and I'm sure that will really help the nutritionist come up with an eating plan.

 

Hey amigo,

You clearly went with the site I mentioned.

I will hear back on Wednesday, according to her 8-day rule she mentions.

My appointment with the nutritionist is on Tuesday, but maybe she'll be nice and look at the results once I've got them.

I told my nutritionist about it and she said she'd never heard of a hair test being able to show allergies, but I can sense this site is legit.

Plus, as far as I can tell, PayPal protects you against con-artists.

But if she's emailed you to say she's interested in finding out if we're similar, she's clearly just as interested as we are.

My hair is pretty short at the moment, so I had to send some of my pubes.

That was a joke.

"Hmmm, what have we got in the post today.... These are curly ones. They need to use conditioner".

Oh dear...

Anyways, despite my dry eyes and feeling of tiredness, I am slowly making progress through the Adrenal Fatigue book, written by James Wilson.

I've already come to the conclusion that my adrenals are suffering. I'd bet my life on it.

Stress of any kind can be the cause, (physical stress, i.e toxins, a.k.a accutane perhaps, and emotional) and it can be worsened by lack of sleep/rest. Later in the book, it offers guidance on how to recover. Hopefully there is more to it than having to fix the stress, because that's a lot easier said than done.

What's interesting though, is it mentions when your adrenals are down, you are then less able to cope with stress. People and things get on your nerves that shouldn't. I can totally say that fits me. A bit of noise from my Dog is enough to get me pissed off these days. I lose my temper much faster and can't seem to control my mouth, i.e. 'Shut up!' But also, it mentions you can become allergic to things and less able to recover from illnesses. Low sex drive is another symptom of this syndrome. I learnt today that a syndrome is a collection of symptoms which can be put into one package, i.e. one disease. The book mentions that your cortisol range can be out of whack. It gives the example of people having 300% stress in their bodies. This can be read through a test. I'd hate to think what reading I'd get for this. Maybe I'd set a record.

The book seems good though, so I'd recommend you guys check it out. If not, I'll just keep you updated.

The nutritionist can test my adrenals though (DHEA and cortisol), so I'll probably get that tested. There goes another 75.

She can then provide a diet and supplements to support these things.

She also told me in an email that your immune marker can be affected through accutane.

Certainly doesn't surprise me, but hopefully there is something you can do about this.

I just need some energy to be able to deal with this shite.

But I expect my theory on all your glands/organs being affected is correct.

Let's not forget this is a chemotherapy drug, and affects the whole body.

Man, it annoys me so much writing that. SHOULD HAVE BEEN TOLD THIS BEFORE SIGNING THE CONTRACT!

C'mon Justice!

Chico, do you think it's a good idea to have stuff like ginger/peppers if you are allergic?

I keep going through Coconut oil too.

Damn expenses!

I'm going to have to get a job at some point soon.

If I'm able to wake up before 10am!

Indigo i think your right about the adrenals, i think lots of people that have gone through the stress of these side effects, have weakened adrenals. Lower testosterone, weak adrenals, could be related to the sexual disfunction problems people are experiencing. I personally eat ginger, and small amounts of chilli too, although i stay away from milk, eggs, and dairy in general. The problem isn't the food per se, the problem is the accutane. The body reacts to circulation boosting foods, it can react to retinol containing foods and foods very high in beta carotene because they affect the accutane within your body.

retinol containing foods are eaten and used immediately, therefore the retinol replaces the accutane in the fat cells, pushing the retinoic acid back into circulation. The body doesn't convert beta carotene to retinol because it already has tonnes of retinoic acid in the form of accutane, therefore very high beta carotene foods can make you sick, because you have high levels of carotene and high levels of retinoic acid in your body together at the same time, which heightens symptoms.

Foods like chilli, ginger, garlic open up the capillaries of the blood, causing the body to dump fat toxins into the lymph / bloodstream. This can cause problems as the accutane enters back into the circulation. Without a fully functioning liver (bile flow) and other factors the body cant remove it so it causes problems.

As long as people realise it's the accutane in your body and not the foods themselves that cause the problem.

The allopathic community is a big hilarious joke, only problem is nobody's laughing at the end. After they have pumped you full of every drug imaginable to cure your symptoms, they leave you, a person with 100x the problems that they had before, and it's off to the therapist because now it's a "mental problem"

I had the worst sebborheic dermatitis of the skin and scalp you could possibly imagine and they were telling me things like "it doesn't stop you from living your life, does it?" ____ off seriously.

Anyway thats past resentments surfacing. It's important to change your mindset from a victim, to empowerment.

Remember retinoic acid is NOT stored in the liver, it is stored in the fat cells of the skin and needs to be removed by healing the body as a whole.

Indigo, I'm sorry to hear you saw such a crappy counselor, or at least had a crappy experience. That sounds very philosophical and not at all the same thing as the more common and effective counseling methods like CBT or even mindfulness therapy.

I can assure you, however, that means you've never done anything remotely resembling cognitive behavioural therapy which is not about asking you strange philosophical questions but getting you to hear your own thinking patterns and connecting it to your behaviours and how you feel, including physically.

I'm surprised at your response since you will believe or take to heart any physical evidence or information people post in this thread (however far-out and anecdotal some of it may be) yet you won't consider CBT (Cognitive Behavioural Therapy) even though it's a very proven, effective method for getting better. Maybe you're scared to try something out of the possibility that it would help? [Edited image out]

I won't persist on this but I have to tell you--- doing CBT can help you pick out thoughts you were having that were keeping you down, that you NEVER knew were even there. It creates a new level of self awareness and can really empower you and help you live better, even in the face of physical problems etc. (some of which are obviously related and exacerbated by anxiety and depression).

Please, at the very least, go and flip through a top-selling workbook/guidebook called "Mind Over Mood" at your local bookstore-- it is a renowned CBT book that will give you an idea of what I'm talking about.

Best,

Andrew

Andrew - I have to admit I'm doubtful over thing kind of thing. Isn't this just masking over the issues and learning to be happy with what you have?

Masking over? Absolutely not. You EXPLORE the issues and highlight/become aware of your "hot thoughts"-- thoughts that may not be true but are alarming to you and hurt you.

For example, CBT wouldn't be trying to brainwash you to think that you are perfectly healthy and should be happy with what you've got, even though you are living with medical problems as a result of Accutane. But it WOULD make you realize if you are thinking in "black and white" terms and "catastrophizing". You become aware of 'hot thoughts' such as "I am never going to recover" and "This pain is too much... I'd may as well just stay in bed" or "I can't live like this" and the incredible impact such thoughts have on how you feel.

I do hear a lot of you thinking with black-and-white thinking, asserting that unless these Accutane problems are solved, you'll never be happy again, etc. etc... Those are not healthy thoughts. They aren't rational, and they aren't healthy, and you are never going to feel happy if you put ultimatums on yourself like that.

CBT has made me realize how many incredibly damaging things I was telling myself about my health. My whole self-perception was completely inaccurate. I was telling myself how sick and incapable I was, which was not true. Did CBT fix my health problems? No. Has it made me a happier, more functional person? Absolutely. I feel a lot more defiant for it!

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

I will stop harping on this, but I just can't believe how such openminded people like you guys (who are willing to try everything related to physical problems to find a cure to your problems) are completely ignoring the emotional/psychological aspect. You cannot deny the intrinsic link between mind and body. You guys even admit that stress plays into health problems in a big way.

I guess I just don't understand what you guys have to LOSE by trying techniques for reducing stress/anxiety and improving the way you perceive your health and happiness.

I have to agree with jmsil.

Aside from seeing doing the CBT classes, which did involve covering what CBT is and being shown how to use the techniques in real life, I've read lots of positive thinking/mind-awareness books and I find it very inpractical in this situation.

I see it useful, perhaps, in cases like anxiety and beating yourself up, but I'm not really sure it's got any use when it comes to accepting these problems.

It seems more focused on being 'rational' and coming up with evidence for feelings, before allowing yourself to feel them.

I have a book on Mindfullness, but I haven't read that one yet.

For a while, I was even trying the Louise Hay route, of repeating positive affirmations, but it's extremely difficult to give up.

I have exhausted book-reading on thinking.

I have read quite a few on the law of attraction, which may or may not be a real thing.

I see it useful, perhaps, in cases like anxiety and beating yourself up, but I'm not really sure it's got any use when it comes to accepting these problems.

It seems more focused on being 'rational' and coming up with evidence for feelings, before allowing yourself to feel them.

 

I think you do have a lot of anxiety and you seem to beat yourself up A LOT about how you are feeling.

Look through your last few posts... the things you are saying are so negative and catastrophizing-- I'm not judging because I can understand why-- but those are exactly the type of thoughts that can be eliminated and re-imagined to more healthy and productive things that don't make you feel so shitty every single time you tell them to yourself.

Even people suffering from horrific, debilitating diseases can cope better by working on the psychological/emotional side of their battle. So to tell me that it doesn't apply to your problems surprises me. Ask anyone who has suffered (and gained some control over) a debilitating disease and they will tell you that self-perception, thinking, and emotions are a major, crucial part of managing their lives and making their lives better.

Anyways, you guys seem to have made up your minds and are going to wait around for an absolute physical "cure" to your problems, so suit yourselves.

Well, of course we do want an actual fix to this, rather than seeing it a new light, but I will try (again) to work on keeping my thinking more positive.

I don't see any reason to see a counsellor again, as I have the relevant resources via the books I've bought over the last few years.

Yes, you are correct in saying I have said some negative/catastrophizing things, but it gets to the point where you have to sit around and go 'Shit, nearly 6 years and despite my best efforts I am actually getting worse!'

That can be very difficult to see in a positive, non-catastrophizing way.

I forget how long you've been putting up with this, but after 5 and half years of it, I am extremely desperate to see some positive changes in my life.

I'm not getting any younger, and life's difficult enough without feeling like an old man (I don't think that's putting things unrealistically) and struggling to get up.

I want this sorted so I can get on with my life, and enjoy things, without having to control my thoughts due to some difficult event in my life.

I'm sorry if you don't like it, but people are different.

You may be able to cope better than me.

Maybe I've got things worse off.

Who knows.

But I'm trying my best, like we all are.

Even with the resources, it's sometimes not enough.

Sure, I may be putting happiness on a pedestal but saying things like 'If only I could fix my physical issues, I'd be happy,' but it's close to impossible to accept this, when there are so many reminders that this isn't how things are supposed to be.

One last note as well... As far as saying 'things will never get better', that seems like a rational thought most of the time.

As jmsil has said, he ate raw healthy foods for 2 years and didn't get any better.

Until, and perhaps if, biology experts start to look at this or we figure it out, I'll find it hard to believe that that's not a rational thought.

Some people don't cure other problems, so how can we be sure this'll ever be fixed?

Not trying to put a downer on this, but that could be the case, couldn't it...

Indy.

That can be very difficult to see in a positive, non-catastrophizing way.

I forget how long you've been putting up with this, but after 5 and half years of it, I am extremely desperate to see some positive changes in my life.

I'm not getting any younger, and life's difficult enough without feeling like an old man (I don't think that's putting things unrealistically) and struggling to get up.

 

All the more reason to work at shifting your perspective on the issue. If you can't fix the physical problems immediately, then why not begin to shift your emotional response immediately?

Anyways, that's all I have to say on the issue. Best of luck! I'll be following along to see what people have to say about their progress getting better but I'm not holding my breath on any quick fixes.

In the meantime I will let you guys know how things go for me now that I have been allergy tested. The allergist felt that my exhaustion and (bad) joint pain was a result of an immunological reaction from my allergies. Already by avoiding those foods I have almost eliminated the joint pains and my energy level is much higher.

Through cognitive-behavioural therapy (and some great insight from my psychology professor) I've been rewiring how I perceive myself. I thought I was thinking rationally all those years of "I'm so sick, I feel like an old man, How will I ever function?" etc. etc., and now realize that in fact, that was completely irrational. I was obsessing over things like how I felt my hairline had dramatically changed and how my hair had thinned along the sides etc. etc... and now I realize that it's almost completely unnoticeable and even when I felt it was at its worst, nobody around me even noticed.

Anyways, hopefully the allergen avoidance will continue to contribute to my health post-Accutane.

That's good to hear.

Me and jmsil get our results, with advice, soon so hopefully avoiding problematic food will help things along.

In the meantime, I'll try not to spend all of my days searching for a cure.

I'll carry on with tests, and getting help from the nutritionist, and of course eating healthy and exercising, but I will try to accept that for now that's all I can do.

I just want to be happy, no matter what happens.

I'll keep working on my thoughts.

Both of you are bringing up really valid points. No matter how you see it, the mind and body are intertwined in more ways than we can possibly imagine. I wouldn't knock CBT; I haven't personally tried it myself, but having the power to recognise and reframe your line of thinking is imperative towards recovery.

Saying that -- Indigo's thoughts are completely justified. Nobody wants to think such dark thoughts, but they are going to be in the spotlight when our bodies are damaged so much. I personally think that fulfilling your bodies physical requirements has a higher priority, but you can start with either in order to get the ball rolling. You have to work on both with 110% effort (not saying anyone here isn't, just making a point ) if you want to make any significant progress, otherwise something will give way eventually -- I just think that having a strong focus on the physical side of things (at least initially) will improve your chances moreso than what therapies can achieve, especially when it's Accutane we're talking about here.