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Repairing the long-term damage from Accutane

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#4841 M Bison

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Posted 10 June 2014 - 08:17 AM

This is a realy nice article!

Not only talking about the problem but trying to explain why this stuff happens.

One thing that bothers me a little bit:

"males get a tiny 6-point font warning about erectile dysfunction"

Is this right? In the US or somewhere?

I wasnt given a 6-point font warning!

I would have been happy about a 2-point font warning...

Why do doctors claim that its not the drug when there is a 6-point font warning on it?



#4842 MrErdem

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Posted 10 June 2014 - 12:37 PM

6 point font warning?? I wouldn't even touch this stupid drug.
The blog tells about nitric oxide. Should we try NO2 supplement?

#4843 showbarka

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Posted 10 June 2014 - 06:11 PM

http://www.ncbi.nlm....ubmed/24902508/

 

This publication is huge for sexual dysfunction with isotreinoin treatment. Its a major step towards legitimising this condition and gaining wider recognition from the medical community. 



#4844 Dubya_B

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Posted 10 June 2014 - 08:48 PM

Thanks accux and showbarka. This would also be a good article to refer your doctor to if you are trying to convince them that this condition exists outside of your own mind.

 

 

@M Bison-  I think the generally accepted theory is that the crash occurs when the effects of the medication wears off or drastically decreases for whatever reason. This could very well happen in every cell in the body in a rapid fashion, leading to a sudden and severe effect. It is considered a withdrawal effect.

I had some noticeable problems on the drug, but my crash happened after I quit taking Accutane.

 

Neurological damage or alterations in neurological function may possibly be a result of Accutanes 5-ar inhibition and/or androgen receptor malfunction. It gets complicated. The drug has been shown in a few studies to lower the activity of enzymes that produce neurosteroids.



#4845 MrErdem

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Posted 11 June 2014 - 06:29 AM

Man, more than 3 months off the drug, a deep depression started. I always find myself regretting why I didnt search google just "accutane and sex" before taking the drug. I want to wake up. Even yesterday I had again a full erection for more than enough, but I feel the numbness afterwards. And no libido kills me.

#4846 M Bison

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Posted 11 June 2014 - 06:10 PM

@Dubya_B - thanks for answering my posts. Yes, dont want to argue here, I dont think we will figure it out exactly, just wanted to share my feelings. According the crash you are right. I got my crash 1 week after quitting the drug, but i quit because of the sexual problems. The crash just added some other fantastic side effects... So the sexual problems, which bother me the most, had nothing to do with the crash. (in my case)

 

@MrErdem keep your head up. There are some people making recoveries, you just need to give your body time. The fact that you have some really good days doesnt sound bad to me. And dont blame yourself for not searching this. A medicine on the market for over 30 years causing this stuff and no doc knows about it? Common... If i had found this forum before taking the drug i´d probably been thinking what a bunch of douchebags. Now, im one of those douchebags... :)



#4847 vianello

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Posted 12 June 2014 - 05:01 AM

I always thought that Zinc must be the key to get rid of isotretinoin side effects. Since it will use more of the Vitamin A which is stored in the liver. I think the key is to take it longterm. But whenever i try to take it, my side effects begin to worsen after 1-2 weeks of taking it, and i just cant continue.

Has anybody taken zinc for several months? Or even years? What was your experience? Do u still suffer from the side effects?

#4848 pabpab

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Posted 12 June 2014 - 08:50 AM

I always thought that Zinc must be the key to get rid of isotretinoin side effects. Since it will use more of the Vitamin A which is stored in the liver. I think the key is to take it longterm. But whenever i try to take it, my side effects begin to worsen after 1-2 weeks of taking it, and i just cant continue.

Has anybody taken zinc for several months? Or even years? What was your experience? Do u still suffer from the side effects?

 

I used to take zinc (1-3 tabs a day, 27 ions of zinc/tab, zinci hydroaspartas). Does nothing. Actually, virtually everything that I tried (even antipsychotic or dopamine agonist) has no effect on me and my sides. It really does my head in...

Re zinc: it's thought to be 5ar inhibitor so given above I gave it up.


Edited by pabpab, 12 June 2014 - 08:51 AM.


#4849 pathtorecovery91

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Posted 12 June 2014 - 09:19 AM

I actually started taking zinc about 3 weeks ago ( 30mg). I take it because I read how it helps acne. I find it helped a bit with my acne. I was breaking out as bad as I was b4 accutane. As far as side effects go, I am still loosing a lot of hair and suffering from ed.

I always thought that Zinc must be the key to get rid of isotretinoin side effects. Since it will use more of the Vitamin A which is stored in the liver. I think the key is to take it longterm. But whenever i try to take it, my side effects begin to worsen after 1-2 weeks of taking it, and i just cant continue.
Has anybody taken zinc for several months? Or even years? What was your experience? Do u still suffer from the side effects?



#4850 pathtorecovery91

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Posted 12 June 2014 - 10:07 AM

Also I would like to say, on YouTube there is this guy who is a bodybuilder. He's young, like 21, and he makes videos. His channel name is humerusfitness. He is currently taking accutane for his bad acne. He is on week 30 of taking it and just used his dose to 100mg!
He is an awesome dude and really goes all out to try and answer all his comments.
I would like to warn him of what he could be expecting in the future as far as long term side effects go, but I am pretty sure he wouldn't listen. He has a big future ahead of him and is on his way to being pretty famous.
Maybe, God forbid, if he does suffer serious long term side effects from the drug, I am sure he is the kind of person who would go all out to take action on doing something about it. So that could mean good news for all of us.
here is a link to one of his videos.

Accutane Week 30 - Upping the Dose, Natural Limit…:

#4851 Bart Australia

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Posted 12 June 2014 - 01:24 PM

Any luck with the cannabis oil?

I'm back down to earth psychologically (took 31 x 20mg capsules in Feb 2014), however I feel dumber (weird, numb, feeling behind my orbits / frontal lobe) (YES, I have read the journal article re: OFC -21% metabolism)

I wrote a much longer post (~1,000 words) but I misclicked and it got erased > . >
I will re-write it when I can be bothered.  I have done 4+ months of obsessive research daily on this and I need an answer bad.  As a 2nd year Neuroscience student I feel I can help you guys out.

What my real concern is, I do not care about the physical side effects at all, I want my brain back.  Can anyone please reply on how they returned to 100% cognitive ability.  As I said, I can literally feel the loss of connection in my frontal lobe.  I have slowly become more emotionally connected over the last 3 months, but it feels like someone stuffed pillows behind my eyes (lobotomy) ?  Fortunately I still have the ability to laugh and am gaining the ability to enjoy life post accutane (ever so slightly).

 

Any replies are welcome.

 

*EDIT:  Crank92 I would like to speak to you on Skype if possible (PM me).  I tried contacting Stefan Lay a while back but he never responded.  Fortunately my parents have been extremely supportive, and I've tried to speak to as many people as possible who have taken Roaccutane to get their take on it.  
Tomorrow I am speaking to my mum's friend from her work who took two courses of it in her 20s (15 years ago).  She suffered severe depression and was institutionalized briefly (wow), however she is now 100% recovered, a practicing lawyer and a mother!  My mum never knew about her history with Roaccutane until she mentioned I was having trouble with it.  
I plan to record the conversation and upload it.  I have been told me she was a big drinker and smoker in her twenties (after recovering).  I'm going to bring up cannabis with her as politely as I can.

If cannabis truly is the answer, I face a real crossroad, a month before I took accutane I had a monstorus panic attack as a result of smoking and drinking at a tent festival (I'm up to date on the THC vs CBD thing re: psychotic reactions.)  But I'd take a small stint of psychosis over permanent debilitation anyday (you can build up tolerance to the psychotic effects anyway.)  Hopefully I can find some good shit in Western Australia and slay the demon that is Roaccutane.  

We're all gonna make it, and we're all gonna come back to this thread in years to come and laugh.


Edited by Bart Australia, 12 June 2014 - 01:52 PM.


#4852 Dubya_B

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Posted 12 June 2014 - 07:15 PM

If anyone is still interested in ordering the 23andMe genomic test, there is a site that will now interpret the raw data file obtained from 23andMe for only $5.00.

Their health report seems even better than the one 23andMe previously provided.


PROMETHEASE
https://promethease.com/ondemandagreed

 

@M Bison & Bart Australia- If you haven't browsed-over it yet, the All Things Male Accutane Sufferers Forum has all sorts of discussions about attempting to treat mental and sexual side effects from Accutane as if they were due to neurological damage. Whether it's right or wrong, most of it is worth reading:

http://www.allthings...Sufferers-Forum

 

Decreased neurosteroid levels leading to decreased hippocampal neurogenesis seems like a plausible explanation for the "lobotomized" feeling many of us have IMHO.

 

Please report your side effects if you haven't already.

Sorry to see you guys stuck on this boat too.


Edited by Dubya_B, 12 June 2014 - 07:23 PM.


#4853 Accutainted

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Posted 12 June 2014 - 07:53 PM

If I was that bodybuilder I would not touch accutane with a 60ft pole

#4854 MrErdem

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Posted 14 June 2014 - 08:45 AM

They found 3,5 cm cyst in my right kidney. It is not dangerous. But I am sure accutane caused this.

#4855 Accutainted

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Posted 14 June 2014 - 06:33 PM

ISOTRETINOIN
High doses= chemotherapy for ppl who are dying

Low doses= acne drug for perfectly healthy ppl

How Roche has sold this lie to thousands of doctors and millions of patients is beyond me.

Edited by Accutainted, 15 June 2014 - 12:26 AM.


#4856 M Bison

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Posted 15 June 2014 - 05:51 AM

ISOTRETINOIN
High doses= chemotherapy for ppl who are dying

Low doses= acne drug for perfectly healthy ppl

How Roche has sold this lie to thousands of doctors and millions of patients is beyond me.

 

Money my friend... Thats the answer in most cases.



#4857 haileylyn95

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Posted 17 June 2014 - 02:27 PM

Hey everyone, I posted back in march saying that I had been diagnosed with MS. GOOD NEWS!! The doctor who diagnosed me with it was wrong. He made the diagnosis just based on my MRI and didn't test my spinal fluid for the proteins present with MS. I am seeing a great doctor now who has been able to help me a lot. He has diagnosed me with pseudotumor cerebri. So there was just way too much pressure on my brain and optical nerves. It has also caused the nerve signals from my eyes to process wrong and my neurons to fire randomly and way too much. And there is a GABA imbalance. My current specialist says he sees this a lot with previous accutane patients. He said with the severity i have I will have to have spinal taps to drain off the extra fluid and relieve the pressure from my brain for most of my life. He also has me on some medications to try to keep the fluid from building up as quickly and to try to get the signals to move at right speed and time from eyes. Hopefully I can get off of them soon but as of now they are trying to get everything stable.



#4858 Dubya_B

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Posted 17 June 2014 - 02:37 PM

@hailey- Good to hear. You might want to PM Gladiatoro from this thread to see what helps him control his episodes of pseudotumor cerebri. Can't remember exactly how he said he does it, but he mentioned to me that he found some pretty reliable ways to prevent it from happening.

 

This still sucks that you may have to deal with this for a long time coming. Don't think there is any mention of pseudotumor cerebri/ intracranial hypertension possibly lasting for years in the drug information.



#4859 Crank92

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  • Interests:Took (Ro)Accutane. 10 days 20mg once per day in October 2012 (200mg total). Sides - Severe emotional blunting, Severe fatigue, IBS, Sexual Dysfunction, Genital numbness.

    I've recovered fully I believe from the emotional blunting and fatigue. The gastric issues are continuing to improve with the SCD diet. The sexual dysfunction and associated ED is improved with cannabis therapy. The genital numbness persists, for now.

    If you would like my research documents on Accutanes link to sexual dysfunction/ED and/or how cannabis could be beneficial PM me your email address. The former document is very handy for convincing douchebag Dr's your sides are legitimate.
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Posted 19 June 2014 - 03:32 AM

Any luck with the cannabis oil?

I'm back down to earth psychologically (took 31 x 20mg capsules in Feb 2014), however I feel dumber (weird, numb, feeling behind my orbits / frontal lobe) (YES, I have read the journal article re: OFC -21% metabolism)

I wrote a much longer post (~1,000 words) but I misclicked and it got erased > . >
I will re-write it when I can be bothered.  I have done 4+ months of obsessive research daily on this and I need an answer bad.  As a 2nd year Neuroscience student I feel I can help you guys out.

What my real concern is, I do not care about the physical side effects at all, I want my brain back.  Can anyone please reply on how they returned to 100% cognitive ability.  As I said, I can literally feel the loss of connection in my frontal lobe.  I have slowly become more emotionally connected over the last 3 months, but it feels like someone stuffed pillows behind my eyes (lobotomy) ?  Fortunately I still have the ability to laugh and am gaining the ability to enjoy life post accutane (ever so slightly).

 

Any replies are welcome.

 

*EDIT:  Crank92 I would like to speak to you on Skype if possible (PM me).  I tried contacting Stefan Lay a while back but he never responded.  Fortunately my parents have been extremely supportive, and I've tried to speak to as many people as possible who have taken Roaccutane to get their take on it.  
Tomorrow I am speaking to my mum's friend from her work who took two courses of it in her 20s (15 years ago).  She suffered severe depression and was institutionalized briefly (wow), however she is now 100% recovered, a practicing lawyer and a mother!  My mum never knew about her history with Roaccutane until she mentioned I was having trouble with it.  
I plan to record the conversation and upload it.  I have been told me she was a big drinker and smoker in her twenties (after recovering).  I'm going to bring up cannabis with her as politely as I can.

If cannabis truly is the answer, I face a real crossroad, a month before I took accutane I had a monstorus panic attack as a result of smoking and drinking at a tent festival (I'm up to date on the THC vs CBD thing re: psychotic reactions.)  But I'd take a small stint of psychosis over permanent debilitation anyday (you can build up tolerance to the psychotic effects anyway.)  Hopefully I can find some good shit in Western Australia and slay the demon that is Roaccutane.  

We're all gonna make it, and we're all gonna come back to this thread in years to come and laugh.



I'll PM you Bart with my email address as I don't currently have a functioning skype (I'll try and set it up over the weekend). Also, I know exactly how you feel as I felt it myself. Although I did at its worst pretty much lose the ability to genuinely laugh. This drug screws you up all kinda crazy.



Also some more good news. Someone (whom will remain anonymous until they decide otherwise) emailed me yesterday regarding my research document. I decided to question if they had any cannabis habits as I'm currently looking to prove my null hypothesis - someone who consumes cannabis on a regular basis still has sexual dysfunction. This is the response I got (bear in mind this person was in their 40's):

"So, background first: As I stated I took RoAccutane when I was 18 and I almost remember the 'snap' in my head when my libido shut-down. I was 19 and from that point forward I remember saying to myself 'when I was 16..." and reflecting on I used to look at girls!

I'd read in a magazine that men peak sexually at 18 and I genuinely thought I was past my prime, which I know is very sad but at that time there wasn't anyone I could talk to. 
I got into a relationship at 20 and things were never red hot between the sheets but as time progressed the situation did improve for me. I could 'perform' ok but the lust wasn't fully there. Ultimately that ended the relationship - she didn't feel desired. 
However, the interesting thing is that we did smoke cannabis on a regular basis - probably 2 or 3 joints a week for me. So... does this mean that my situation improved to the point that I could perform ok because I was taking cannabis or would the situation have improved naturally over time?? I honestly don't know. There was improvement though. I haven't smoked or taken cannabis in any form since then (I stopped when I was 23)."

COINCIDENCE! They improved whilst smoking the green on a semi-regular basis. They also mentioned once they stopped the green, no further improvement occurred. 
The anecdotal evidence continues to build up!

Edited by Crank92, 19 June 2014 - 03:35 AM.


#4860 Crank92

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  • Interests:Took (Ro)Accutane. 10 days 20mg once per day in October 2012 (200mg total). Sides - Severe emotional blunting, Severe fatigue, IBS, Sexual Dysfunction, Genital numbness.

    I've recovered fully I believe from the emotional blunting and fatigue. The gastric issues are continuing to improve with the SCD diet. The sexual dysfunction and associated ED is improved with cannabis therapy. The genital numbness persists, for now.

    If you would like my research documents on Accutanes link to sexual dysfunction/ED and/or how cannabis could be beneficial PM me your email address. The former document is very handy for convincing douchebag Dr's your sides are legitimate.
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Posted 19 June 2014 - 04:03 AM

Hey Guys.

Hope you're doing okay...

 

Just wanted to check in.

I'm still in the same boat as I was a couple of years ago.

Have days that are better than others, but overall have to survive each day as it comes, usually with a big lack of energy.

 

A really good book for anxiety (a big problem for me) is At Last A Life, by Paul David.

It's about letting go of control. I'd read it in the past but am re-reading at the moment.

I try to avoid researching anything with health now - I've wasted a lot of my life looking for a cure and never found it.

 

However, the dude who posted a video about liver flushing to cure himself has made me want to give it a try.

I'm skeptical, because after researching into it a little, there are others who have done dozens of flushes and are still in a poor state of health.

It's hard not to be bothered by the complexity of all of this.

Cannabis oil is never going to be a viable option for me and some others that post here.

I have doubts that it will be the final answer too.

 

Some days I feel like I'll never get out of this mess.

On others, I feel more optimistic.

For now, I'm eating as a vegetarian (though I'll have fish occasionally). I try to avoid processed foods as much as possible, but can't help but feel I should be benefiting more than I am by my dietary choices.

I plan to try a liver flush in the next few weeks, after taking some colon cleansing supplements (magnesium oxide based).

I take probiotics daily and firmly believe that our main point of focus needs to be detox pathways - Digestive system and liver support.

 

I've messaged the guy (James, was it?) who made the YouTube video and haven't yet heard back, so if he happens to be reading this, please get back to me.

The liver cleanse process doesn't exactly sound much fun, but what is there to lose at this stage?

I just want my health back, rather than trying to pretend everything isn't all that bad.. Because it is.

When I think about the years lost because of a fucking acne drug, it just gets to me.

 

Stefan 


I know you're against it at this stage Stefan but I thought I'd also point out that James (ManitobaMountain) was an individual who consumed large amounts of cannabis for 6 months if I remember correctly.

Also, you've disappeared off facebook. I'm hoping sh*t hasn't hit the fan...



Also anyone with gut issues who thinks the remaining problem is simply a bacterial imbalance google: 'Specific Carbohydrate Diet Yoghurt' it's a homemade yoghurt that isn't expensive nor difficult. It contains 3 billion bacteria/ml. Therefore a 500ml bowl of yoghurt is.... 1,500 billion bacteria. Compare that to your average dose of pro-biotics which is anywhere between 10 and 50 billion and they cost a hell of a lot too!






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