Hey everyone, long time lurker here since ~2016.

Took accutane at 80mg/day for 3 months back in 2013 when I was 16, first sign was depression and ED, and then put on fat, lost muscle, and got injuries, joint pain, digestion issues, rashes/dry skin. After about a year a bit of acne came back, and I could get weak erections again, and I started eating healthy and working out in the gym, but I am still injury prone, like have chronic shoulder, knee and groin issues. The few times I've slept with a girl, it is either too weak or doesn't happen, so I decided I am once and for all going to fully commit to solving this issue.

I've been looking into fasting and was wondering if anyone has done it before, and if they did for how long and what their results were like? I'm currently 4 days into my third fast (the first two went 3 days) and I am going to keep going until I think sufficient autophagy has occurred. Because I was pretty heavy I'm still 100kg at 190cm, but over the next few weeks whenever I find several days in a row without social commitments I will do another fast. I've heard dry fasting is really good for healing so when I get leaner I might do the last 3 days of my fast dry to get max benefits. At least if it doesn't work I'll be lean lol. Also a famous AFL player Jim Stynes started drinking his own urine to boost and repair his immune system when he was on Chemo, and because I reckon accutane is like Chemo my desperation level isn't that far off trying that shit out too lol, but not yet...

Fuck me I wish it had been cancer sometimes, its hard explaining the reason you're all fucked up is because you didn't want acne... which you still have anyways

6 hours ago, Mabbbs said:

Please post if you discover any abnormalities from any test you did.

off the top of my head. there's some not so good ones, could be exclusive to myself. I took accutane around 20 years ago.

Cerebral atrophy, thinning of the corpus callosum. At this point its just classified as a generic neurodegenerative disease. Found on MRI, they couldnt tell if its progressive at this point.

Possible left ventricular hypertrophy.
Abnormal heart stress test response.
lupus anticoagulant positive once, neg another time. This looks at antiphospholipid syndrome.

Acetylcholine ganglionic neuronal antibodies
3 types of candida antibodies.
mild sinus thickening

You might have to find something downstream at this point to put it all together.
Most interested in projects like Ubiome going forward when it comes to future testing.

Anything to report on hypothalamus or pituitary??

Can an MRI show anything in regard to this?

14 hours ago, Charles133 said:

Hey everyone, long time lurker here since ~2016.

Took accutane at 80mg/day for 3 months back in 2013 when I was 16, first sign was depression and ED, and then put on fat, lost muscle, and got injuries, joint pain, digestion issues, rashes/dry skin. After about a year a bit of acne came back, and I could get weak erections again, and I started eating healthy and working out in the gym, but I am still injury prone, like have chronic shoulder, knee and groin issues. The few times I've slept with a girl, it is either too weak or doesn't happen, so I decided I am once and for all going to fully commit to solving this issue.

I've been looking into fasting and was wondering if anyone has done it before, and if they did for how long and what their results were like? I'm currently 4 days into my third fast (the first two went 3 days) and I am going to keep going until I think sufficient autophagy has occurred. Because I was pretty heavy I'm still 100kg at 190cm, but over the next few weeks whenever I find several days in a row without social commitments I will do another fast. I've heard dry fasting is really good for healing so when I get leaner I might do the last 3 days of my fast dry to get max benefits. At least if it doesn't work I'll be lean lol. Also a famous AFL player Jim Stynes started drinking his own urine to boost and repair his immune system when he was on Chemo, and because I reckon accutane is like Chemo my desperation level isn't that far off trying that shit out too lol, but not yet...

Fuck me I wish it had been cancer sometimes, its hard explaining the reason you're all fucked up is because you didn't want acne... which you still have anyways

I think you're on the right track with the fasting. It's the one thing that has helped me the most. I fast and I only weigh 60kg but I still see benefits. Weight loss is obviously not one that im looking for.

One reason fasting could be so beneficial to us is that it allows for vitamin A depletion from the liver and adipose tissue. You might find this a contradiction as most people here believe in a post accutane vitamin A deficiency. I personally believe it's vitamin A toxicity.

Good luck

7 hours ago, marshl1 said:

I think you're on the right track with the fasting. It's the one thing that has helped me the most. I fast and I only weigh 60kg but I still see benefits. Weight loss is obviously not one that im looking for.

One reason fasting could be so beneficial to us is that it allows for vitamin A depletion from the liver and adipose tissue. You might find this a contradiction as most people here believe in a post accutane vitamin A deficiency. I personally believe it's vitamin A toxicity.

Good luck

I've heard fasting gives more benefits the leaner you are, because if you still have fat your body can happily just go and burn fat, but once you are low on body fat your body is forced to burn other organ tissue, and so your immune system goes crazy trying to harvest the shit that is damaged or thinks it doesn't need.

anyway, a 4 day fast for you is probably equivalent to a 10 day fast for me, but eventually I'll get leaner too.

Im not avoiding vitamin a, but a few years ago I was having vitamin d, e and k. I had my last wet dream 2 years ago and it was after taking vitamin a, but I took it again later and I started to feel sensitive again, so I stopped

11 hours ago, marshl1 said:

I think you're on the right track with the fasting. It's the one thing that has helped me the most. I fast and I only weigh 60kg but I still see benefits. Weight loss is obviously not one that im looking for.

One reason fasting could be so beneficial to us is that it allows for vitamin A depletion from the liver and adipose tissue. You might find this a contradiction as most people here believe in a post accutane vitamin A deficiency. I personally believe it's vitamin A toxicity.

Good luck

Yeah but the confusion with Vit A lies in the fact that doctors have put Tane patients on Vit A when they suffered adverse reactions - thats a fact.

Not sure where its posted exactly but thats what they did....I tried to ask why they knew to do this but there was no definitive answer from anyone....

Anyway - if the HPA axis is screwed, I doubt avoiding Vit A will fix it completely.

here's a rare autoimmune nervous system disease that affects the peripheral nerves, but maybe it might not be too far off.

Bifidobacterium alleviates guillain-barre syndrome by regulating the function of T17 cells
Int J Clin Exp Med 2018

Guillain-Barre syndrome (GBS) is a peripheral autoimmune neuropathy marked by progressive and potentially fetal ascending paralysis with loss of motor reflexes, peripheral nerve demyelination, and inflammatory cell infiltration

Seriously!?

2-3 people have mentioned sexual side-effects on this page of the thread and can't be bothered to comment on the FDA petition?

This can be done using "anonymous anonymous" as a name.

https://www.regulations.gov/docket?D=FDA-2018-P-4088

If you are sick of going to doctors and hearing that it is "all in your head" because sexual side effects aren't listed, at least do this much to help.

Enough people have posted enough stories on here it would be easy enough to save these/your story, copy and paste to any and every outlet you have.
i don't think it needs to be limited to Ed, there are so many similar stories on long lasting side effects it's not a coincidence.
Anyways...
Got something else, pretty recent.

Antiviral effect of vitamin A on norovirus infection via modulation of the gut microbiome.

https://www.nature.com/articles/srep25835

Later on I have what might explain the rather permanent effects or a hypothesis from another recent study involving immune regulation.

Who cares what is posted here? Nobody who matters in changing warnings on drug labels cares, or sexual dysfunction and the risk of other persistent side effects would have been added years ago. The FDA certainly doesn't care what is said here.

Commenting in the link posted isn't going to change the world but is better than wasting time theorizing endlessly.

Some people seem to not comprehend that begging for medical help, or simply recognition, for sexual side effects from Accutane will get you branded as a nutcase because so few people are willing to do anything toward getting it recognized.

i'm actually seeing a lot of success for my mental, physical, and sexual health using psilocybe cubensis. it's more than just a serotonin agonist. it's as if the mushroom inherently senseswhat is wrong with youand either it begins to heal you or tells your brain and body to heal. there's no doubt in my mind as to why it's illegal in many modern western societies.

On 18/11/2018 at 10:55 AM, Dubya_B said:

Who cares what is posted here? Nobody who matters in changing warnings on drug labels cares, or sexual dysfunction and the risk of other persistent side effects would have been added years ago. The FDA certainly doesn't care what is said here.

Commenting in the link posted isn't going to change the world but is better than wasting time theorizing endlessly.

Some people seem to not comprehend that begging for medical help, or simply recognition, for sexual side effects from Accutane will get you branded as a nutcase because so few people are willing to do anything toward getting it recognized.

I have zero faith anyway in the FDA....

Certainly in relation to Accutane- where was their safeguarding in the first place???

Having said that, commenting on a site if you have sexual issues isnt going to hurt - if your goal is to get more warnings put on labels than thats fine. Id of thought that anyone researching Accutane would know by now that Roche have stopped making it - that in itself should tell you how dangerous this drug is yeah - doctors should be telling people that too.....unfortunately for many of us who took it 20 years ago we couldnt research too much into it, you just trusted your doctor....these days I pray people do their homework and other than trusting your doctor which is still the expectation Id say, there is no excuse for not knowing the dangers of this drug - I say that with sympathy for those who still end up on it.

Also, with regard to commenting on that site, does not being able to start a family cause youre too fucked up from Tane count as a sexual issue??
Its a grey area as to what counts as a sexual issue, I can perform the act no problem but have I put off starting a family etc cause Im too physically/mentally messed up still....yes absolutely I have had to make this choice!!

How will they word that little scenario on a warning label I ask?

Warning - This product may mess your life up

Read into that what you want....,

On 11/17/2018 at 1:43 AM, Dubya_B said:

Seriously!?

2-3 people have mentioned sexual side-effects on this page of the thread and can't be bothered to comment on the FDA petition?

This can be done using "anonymous anonymous" as a name.

https://www.regulations.gov/docket?D=FDA-2018-P-4088

If you are sick of going to doctors and hearing that it is "all in your head" because sexual side effects aren't listed, at least do this much to help.

I am totally with you on this Dubya. Why don't the lads on here realise that we will only ever get expert researchers involved when awareness has been raised.

Waiting for the Propecia foundation to come up with something is stupid -it is a different condition even if the sides are similar.

If even 10 % of people had reported their sexual side effect these past 30 years awareness would be very high now and the drug may even have been banned.

Expecting kids to go on the internet and decide if an acne drug is safe is unreasonable. I know many do and that's great but some don't and they should't have to pay

with theirlife or a life that is any less than it should be.

Dubya - I have to say it is the veterans that are mostly letting kids down - they are here trying to cure themselves but they don't give a F*** about all the young kids that are taking this crap!

We have had many greats in history who have stood up and fought for what they believed in and where would we all be without them?

I don't care how sick anyone is - get of your backsides and report your side effects and comment on the petition that only takes 2 minutes.

Dr Healy isincrediblybusy but he has taken the the time to help us - do your bit without winging!

Thanks for all you good work Dubya.

You say you want to raise awareness, but I think you both lack awareness.

Not everyone is on the same quest or has the same priorities as you can tell. I dont become hostile or insult them for this because I get it.

I think some people misinterpret things because anger is what's driving them.

Believe me I would love to nail or pin some things on the drug manufacturer, but I think what you guys are chasing isn't going to amount to much. They are going to have to look at more than that.

I know how this is going to play out. Again I get it. you get another side effect label slapped on there and it's a victory. Then what? Your going to wait for someone else to figure it out for you? What do you do in the meantime? How many years will pass?

As far as getting the drug banned, believe it or not there are far worse side effects then being forced to become a monk that are already on the label. How has that helped people so far?

How has it helped them recover?

I have love and empathise with all of you, but don't tell me i'm wasting my timebecause I don't like saying your wasting yours. As far as theories, they are all theories. Including looking at genetic data to reporting to the fda = a better outcome for yourselves and others. Some of us just have a different vision of this based on our plight.

Well said guitarman

To suggest for even a second that its a victim whos letting someone else down is just pure ignorance- like Id point the finger and say that to another victim - that comment beggars belief!!

Like Ive said in other posts on the subject of reporting - if youre a crusader for getting labels changed and thats your priority than all power to you - I sincerely mean that, go forward and change laws if you like but never point the finger of blame atanother victim for fuck sake.

11 hours ago, guitarman01 said:

You say you want to raise awareness, but I think you both lack awareness.

Not everyone is on the same quest or has the same priorities as you can tell. I dont become hostile or insult them for this because I get it.

I think some people misinterpret things because anger is what's driving them.

Believe me I would love to nail or pin some things on the drug manufacturer, but I think what you guys are chasing isn't going to amount to much. They are going to have to look at more than that.

I know how this is going to play out. Again I get it. you get another side effect label slapped on there and it's a victory. Then what? Your going to wait for someone else to figure it out for you? What do you do in the meantime? How many years will pass?

As far as getting the drug banned, believe it or not there are far worse side effects then being forced to become a monk that are already on the label. How has that helped people so far?

How has it helped them recover?

I have love and empathise with all of you, but don't tell me i'm wasting my timebecause I don't like saying your wasting yours. As far as theories, they are all theories. Including looking at genetic data to reporting to the fda = a better outcome for yourselves and others. Some of us just have a different vision of this based on our plight.

 

 

You don't think we are looking for cures? You have been looking for 5 years, as yet without success. I am not saying stop looking for a cure,I want you with all my heart to find the answerto this. I am saying take five minutesto report your side effects - whatever you ideas about how useful or not it might be - what is the harm?

I want a cure more that I want accutane banned and that is for selfish reasons and I am not ashamed to say this. But I also don't want to see any more kids harmed in this heinous manner.

I am certainly not criticisingyou for trying to heal yourself but if I had to put my money on you or a whole team of researchers to find a cure - the choice for me is obvious.

As for the PIL, clearly patients and even doctors and not grasping just how serious all the side effects are which is why I believe the drug should be banned.

If at the end of the day adults are really fully informed and decide to take the risks fairenough but for anyone who thinks kids should be taking this drug - shame on you and shame on you for not doing anything to stop it.

I know better than any of you how disgusting the FDA, MHRA and the pharmaceuticals companies are and I know how many people have tirelessly campaigned to get the drug banned or its use greatly restricted but by not standingup you are telling them that what happened to you is ok!Dr Bemner and Stupak got prescriptions down to 5% of what they once were so to say campaigning is a waste of time in not true.

You are right that getting this drug banned or restricted wont help you or us and you are right. Sadly if othershad been more sucessful in raising awareness in the past none of us would be injured now or waiting our time on this forum.

Good luck with finding a cure - I will be the very first to applaud you when god willing you have success.

10 hours ago, TrueJustice said:

Well said guitarman

To suggest for even a second that its a victim whos letting someone else down is just pure ignorance- like Id point the finger and say that to another victim - that comment beggars belief!!

Like Ive said in other posts on the subject of reporting - if youre a crusader for getting labels changed and thats your priority than all power to you - I sincerely mean that, go forward and change laws if you like but never point the finger of blame atanother victim for fuck sake.

When I say veteran Imean you Truejustice! There are victims of the drug and there are born victims (not mutually exclusive) you for sure fall into the latter category!

You have the least credibility of everyone on thisforum because all you do is whine, ask inane questions and support no one!

What have you got to say to all the young men who have fallen victim to the drug these past few years, -"your stupid for not going on a forum and for trusting your doctor"?

I am not pointing the finger at newly injured young people but I am pointing my finger at you. Guitarman might one day find a cure but youfor sure won't!

I am not clever enough to find a cure and I know it. So I will continue to raise awareness to stop others getting hurt whilst at the same time doing everything I can to ensure that one day we get the researches doing all they can to help the injured.

Can't spare 5 minutes to fill out and adverse event form or 2 minutes to comment on a petition - joker!!

6 hours ago, hatetane said:

When I say veteran Imean you Truejustice! There are victims of the drug and there are born victims (not mutually exclusive) you for sure fall into the latter category!

You have the least credibility of everyone on thisforum because all you do is whine, ask inane questions and support no one!

What have you got to say to all the young men who have fallen victim to the drug these past few years, -"your stupid for not going on a forum and for trusting your doctor"?

I am not pointing the finger at newly injured young people but I am pointing my finger at you. Guitarman might one day find a cure but youfor sure won't!

I am not clever enough to find a cure and I know it. So I will continue to raise awareness to stop others getting hurt whilst at the same time doing everything I can to ensure that one day we get the researches doing all they can to help the injured.

Can't spare 5 minutes to fill out and adverse event form or 2 minutes to comment on a petition - joker!!

 

 

Thank you hatetane for the uplifting comments- much appreciated

thanks for also taking on board what I said about not blaming or attacking other victims

very respectful....

How can we not place blame and guilt?

There was discussion in the UK parliament 4-5 years ago to fund research into Accutane side-effects.

The parent's group fought, while the vast majority of the people who claim their lives were ruined by this drug remained silent.

This is like being shipwrecked on an island, trying to send out an SOS, with the other survivors refusing to help build the fire.

Very good information in this video. Silicon valley engineer on the fundamentals of healthy eating and his battle with melanoma.
If you feel like liver detoxification is aconcern, this may be a good protocol to try.

I think the stories are what sells this so to speak. Not necessarily the side effects.

As you get older it will be harder to quantify specific sides because they are mostly non specific.

So how do you report your sides? You maybe more so have to tell your story.

Regarding ED or loss of sensation, Dr David Healy seems to be mostly focused on this, which is fine, but i think missing the bigger picture. Its just another facet of a possibility.

This could be labeled as psychosomatic or lumped in with depression/mental state. You got to find something real. (real in the sense that its measurable, I know first hand its very real)

What more is to test when looking at this specifically? That's noninvasive?

Propecia guys have been chasing hormones and 5ar inhibitors like Accutane guys have been chasing vitamin a toxicity.

Any results? In a clinical or research setting you probably have access to a few more tests related to this but maybe not a whole lot compared to whats already been tested by the communities.

Thats why I continue to look at what hasn't been explored yet, the not so obvious or seemingly unrelated.

Ive reported my sides to the FDA, my dermatologist, hundreds of drs, donated money.

The ultimate goal still is to report alot more then my sides.

Regarding sides, the slick thing about this drug is you could come up with a side effect that's written on the label 20 years down the line because of the long term modulation nature of the drug. That's what could make a case for getting something banned.

But then how do you trace it back to the drug? You got to find something.Thats not non-specific.

No one signed up for permanent effects that didnt have to do with acne.

Sadly I believe that the warning of depression which was on the label when I took it in 1998 gives the manufacturer in easy way out legally speaking when it comes to fighting them.

I suffer horrible depression and do everything I can to battle it, many of you suffer sexual side effects which again I would think theyll just pass off as stemming from depression if it ever came down to fighting them in court.

I finally posted a comment on that petition- after reading some of the other comments I came to realise its not just for sexual sides - I realised how much this means to many of you, to have labels changed so I decided to say something

Understand Im not a social media fan at all, this forum is really my only outlet, I dont even have Facebook - dont need it and dont trust people from either hacking it or doing something stupid with my info.

also, it would be interesting to know what some of the original warnings were whenever they started putting warnings on the label - couldve been as early as 1982....maybe the birth defects was one of the first?

Just a quick update on taking Beta Carotene -

Been a couple of weeks or so now.

The bumps on the backs of my arms that I have had since taking accutane have nearly disappeared and haven't returned.

My anxiety feels a little less, not clenching my teeth together half as much.

I don't have ED and have never had a problem getting or maintaining an erection, however, noticed more morning wood since the BC.

Skin on my face is still terrible and dry, which is the one thing I want to fix.

A recent story on the Daily Mail website discusses several of the recent regulatory actions regarding Accutane and includes the story of a man who has been suffering sexual dysfunction and depressive symptoms since taking Accutane years ago.

https://www.dailymail.co.uk/health/article-6431453/Thousands-prescribed-Roaccutane-theres-disturbing-evidence-leave-men-suicidal.html

On 11/16/2018 at 10:44 PM, TrueJustice said:

Yeah but the confusion with Vit A lies in the fact that doctors have put Tane patients on Vit A when they suffered adverse reactions - thats a fact.

Not sure where its posted exactly but thats what they did....I tried to ask why they knew to do this but there was no definitive answer from anyone....

Anyway - if the HPA axis is screwed, I doubt avoiding Vit A will fix it completely.

Doctors may well have put patients on Vitamin A post Accutane but to what end? I don't now why they would do that and it won't improve anything.

I have taken an extremely high dose Vitamin A medication in Isotretinoin and ithas left me with plenty of side effects which match those of Vitamin A toxicity.

The last thing im ever going to do is take Vitamin A.

I am making real but gradual improvements on a vitamin A depletion protocol