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Neit

Looking for advise before letting my Son use Isotretinoin

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Hi

My post post here and looking for some advice.

My 17 year old son has fairly bad acne, and after several trips to his GP, he was referred to a specialist who has prescribed Isotretinoin (following a blood test).

It appears this is the same product as Accutane (although I can't confirm this. We're in the UK btw) and after reading dozens of horror stories I'm extremely reluctant to let him take the medication due to long term health affects.  The GP that prescribed this didn't seem concerned by this.

So, I'm wondering if anyone has experience of Isotretinoin or the current equivalent, and whether the current formulation is any safer than the previous Accutane that appears to have been withdrawn in 2009 then reformulated and re-introduced more recently.

Personally I'd rather he stuck to the topical creams, that take a risk with this, but its his choice also.

Anyone offer any comment?

thanks


 

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Hi Neit,

I definitely understand your concern! Accutane is powerful stuff. Sorry for the long post ahead, but I feel like I can relate based on my own personal experiences.

Isotretinoin and accutane are used interchangeably. "Accutane" is actually a brand name. You are right, there used to be a previous version of "accutane" that was discontinued and replaced by Isotretinion. But, it is still most commonly known and referred to as accutane. The drug is meant to be a last resort for severe and/or persistent acne, after everything else has failed. Usually, if the patient has tried several different creams/antibiotics and nothing seems to work, the doctor will suggest accutane. They also take into consideration how long you've had the acne & what you've tried on your own.

More than half a million people world wide have been prescribed this drug. Since every drug has potential side effects, it's no surprise that people have had bad experiences. However, the majority of people who take accutane have a normal/positive experience with it. The thing is, it's more often the people who have a bad experience that come back to tell the tale. That is likely why the specialist didn't seem concerned - he's probably had dozens of patients that he has prescribed the drug to with no problems. 

I took accutane in 2009. I was 16 at the time. I had been dealing with problem skin since puberty, but around age 15/16 it really got bad. I spent hundreds of dollars on over-the-counter products without success as well as different treatments from my doctor and dermatologist. Nothing was working for me, and it was getting to the point where it was having such a strong, negative impact on my daily life that the pros of taking the drug outweighed the cons. My mom had the same concerns as you about the drug and was reluctant for me to take it. Eventually, she allowed it because she could see how much I was suffering. For me, the thought of continuing the trial-and-error process with more topicals for another year or 2 was unbearable. My face was always hurting, and my self-confidence was so low that I broke down crying frequently. I needed something that I knew would work.I started researching success stories about accutane to hear some positive feedback. I found a lot of videos on Youtube of people sharing their before/after photos with accutane.

For me, the drug was a miracle. I didn't experience any major side effects and I finally got completely clear skin (at that point, I had forgotten what that was like). 7 years later, I'm still as healthy as ever. I don't have any long-term side effects/conditions or other health issues. When I look back, I am so thankful that I went through with it. It saved me a lot of pain.

So, to conclude, I think you should talk it over with your son. Go through the both the pros and cons. Talk about what he has/hasn't tried. If he's willing to try a few more mild treatments first then do that, but if he's really struggling and wanting to take accutane then you might consider it.

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Can only speak for my own experience, but taking Roaccutane (I'm also in the UK) was the best thing I ever did. Yes, there are potential serious side effects, but they are the exception not the rule. I can't tell you what to do, but I can tell you that living with acne, particularly at that age, can have real long-term effects on mental health long after the acne is gone.

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Thanks very much to you both for the information and sharing your experiences.  We're going to talk through it all again tonight and probably proceed, fingers crossed he experiences no unwanted side effects.

If we do go ahead I'll be sure to come back and post our story

thanks.






 

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Hello! Just wanted to say that Accutane really was no cure for me. Also from the UK - I'm a 21 year old with SEVERE joint pain that seems to be permenant - I finished Accutane two years ago and still struggle with my waitressing job. Accutane also seemed to bring about psychosis - my second time on it I started hallucinating and had very extreme suicidal thoughts that took around 4 months to go. The "psychosis team" sent out to review me said it was Accutane induced almost certainly and that they'd "seen it dozens of times before".
If your son starts experiencing any side effects PLEASE make sure he stops until he is reviewed and has full blood work done. I'm sorry to sound like such a Debbie Downer, but I do feel compelled to share my experience. I'd also like to point out that I've known 6 people all within the 16-22 age bracket who've been on Accutane and all of them got their acne back except one. I know that is a purely anecdotal story but I really think he should consider another option if at all doubtful - Acnecide is available over the counter at boots and EXTREMELY effective. Accutane made my skin a whole lot worse, as well as costing my health in many ways. Aside from the joint pain, I'm mentally sound now but it was a bloody scary few months! 
Best wishes whatever your decision, I really hope he has success, acne is such a hideous thing for confidence :( 

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On 1/17/2017 at 9:58 AM, kelbell812 said:

Hi Neit,

I definitely understand your concern! Accutane is powerful stuff. Sorry for the long post ahead, but I feel like I can relate based on my own personal experiences.

On 1/17/2017 at 6:00 PM, Hominid said:

Can only speak for my own experience, but taking Roaccutane (I'm also in the UK) was the best thing I ever did. Yes, there are potential serious side effects, but they are the exception not the rule. I can't tell you what to do, but I can tell you that living with acne, particularly at that age, can have real long-term effects on mental health long after the acne is gone.

Great replies, guys!! :smileys_n_people_82:

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I have never been on Accutane, but I can tell you that a topical (Retin A) has caused more damage (maybe permanent) to my face than any oral med ever has. Good luck!

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The Isotretinoin on the market today is largely similar to what was on the market before. It converts to the same metabolites in the body (All-trans retinoic acid) and causes apoptosis (cellular death) in multiple parts of the body. Like any other chemotherapy drug, Accutane's effects are not limited to one part of the body.

The following quote talks about how Accutane can starve off stem cells, which are responsible for repair functions throughout the body.


"We have learnt that retinoids provide an essential, early signal that initiates a cascade of events leading to changes in proliferation, differentiation and predominantly apoptosis affecting most CRABP-2 expressing somatic cells as well as the stem cell compartments.8" - Source.

This next quote explains how Accutane is capable of causing cellular death in the brain, bones, and muscles.

"We have to appreciate that isotretinoin does not “exclusively” targets apoptosis of the sebaceous glands as proapoptotic drug effects have been observed in several unrelated cell systems and explain all adverse effects of isotretinoin and other retinoids (Table 2). The asthonishing functional overlap of changes in FoxO-mediated gene transcription and isotretinoinmediated gene transcription (Table 1) strongly suggests that isotretinoin and its isomerization product ATRA induces upregulation of FoxO-signaling and exerts apoptotic effects in multiple cell types like the muscle, the bone and the brain." - Source.

This next source talks about how Accutane us more associated with suicide than a drug given to depressed patents (i.e., Prozac).


"He found that between 1989 and June 2003, there were 216 reported drug-linked suicides in under 18 year olds. Of these, 72 suicides were linked to Accutane. The next highest number of suicides – 55–involved Prozac." - Source.

It also discusses the issue of under-reporting. Most side effects are not reported to the FDA.

"Since MedWatch reflects approximately 1% of actual adverse drug events, 72 Accutane suicide reports represent 7,200 suicides. And 55 Prozac-related suicide reports represent 5,500 suicides." - Source.

Here are more articles that talk about Accutane's connection to psychiatric issues:


A 4-month treatment trial with isotretinoin was associated with a decrease in brain functioning in the orbito-frontal cortex, a brain region implicated in depression.” -Source

"In the case of patients reported to the Norwegian Medicines Agency, single photon emission computed tomography (SPECT) of the brain was performed in 15 cases who reported lasting neurological symptoms. Altered brain function was seen in all cases involving altered or reduced frontal lobe blood flow. Ten of these patients were evaluated to have organic brain damage." -Source

Personally, I developed serious psychiatric complications from Accutane that have not resolved in the 4 years I have been off of it. These symptoms include anhedonia, emotional blunting, depersonalization, brain fog, cognitive decline.

Edited by ACCUiTy_drANE

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100% have him take it. I've been on two courses both 6 months of 80mg, and my biggest regret is not going on it sooner. I have some mild scarring and accutane would have prevented that. This was not the website to ask this question, A LOT of these people are hypochondriacs and will 100% try to convince you not to. The reality is that rare side effects are >1%, just like MOST medication. If his acne is bad it will continue for awhile and leave scars, do your kid a favor and put him on it 

The perfect example is the gentleman who posted above me. He has an absurd amount of posts in the "accutane damage" thread (which consists 95% of hypochondriacs) which signifies obsession. For example there's a member in that threat who took a low dose of accutane for ONE MONTH..... he is convinced he is ireversablly damaged and posts i that thread every day for the last EIGHT YEARS. I'm telling you this website has something called sample bias. Millions of people who take this drug and move on with their lives, very rarely will someone take a drug with no problems and post online saying "hey I took accutane everything went fine". The people who tend to come online have bad experiences 

Btw A LOT of what the guy who posted above me IS NOT TRUE. Most of it is not true. Some of those studies were done on rats, none of them on humans. It is not even remotely proven to do ANY of those things. 

2 hours ago, ACCUiTy_drANE said:

The Isotretinoin on the market today is largely similar to what was on the market before. It converts to the same metabolites in the body (All-trans retinoic acid) and causes apoptosis (cellular death) in multiple parts of the body. Like any other chemotherapy drug, Accutane's effects are not limited to one part of the body.

The following quote talks about how Accutane can starve off stem cells, which are responsible for repair functions throughout the body.


"We have learnt that retinoids provide an essential, early signal that initiates a cascade of events leading to changes in proliferation, differentiation and predominantly apoptosis affecting most CRABP-2 expressing somatic cells as well as the stem cell compartments.8" - Source.

This next quote explains how Accutane is capable of causing cellular death in the brain, bones, and muscles.

"We have to appreciate that isotretinoin does not “exclusively” targets apoptosis of the sebaceous glands as proapoptotic drug effects have been observed in several unrelated cell systems and explain all adverse effects of isotretinoin and other retinoids (Table 2). The asthonishing functional overlap of changes in FoxO-mediated gene transcription and isotretinoinmediated gene transcription (Table 1) strongly suggests that isotretinoin and its isomerization product ATRA induces upregulation of FoxO-signaling and exerts apoptotic effects in multiple cell types like the muscle, the bone and the brain." - Source.

This next source talks about how Accutane us more associated with suicide than a drug given to depressed patents (i.e., Prozac).


"He found that between 1989 and June 2003, there were 216 reported drug-linked suicides in under 18 year olds. Of these, 72 suicides were linked to Accutane. The next highest number of suicides – 55–involved Prozac." - Source.

It also discusses the issue of under-reporting. Most side effects are not reported to the FDA.

"Since MedWatch reflects approximately 1% of actual adverse drug events, 72 Accutane suicide reports represent 7,200 suicides. And 55 Prozac-related suicide reports represent 5,500 suicides." - Source.

Here are more articles that talk about Accutane's connection to psychiatric issues:


A 4-month treatment trial with isotretinoin was associated with a decrease in brain functioning in the orbito-frontal cortex, a brain region implicated in depression.” -Source

"In the case of patients reported to the Norwegian Medicines Agency, single photon emission computed tomography (SPECT) of the brain was performed in 15 cases who reported lasting neurological symptoms. Altered brain function was seen in all cases involving altered or reduced frontal lobe blood flow. Ten of these patients were evaluated to have organic brain damage." -Source

Personally, I developed serious psychiatric complications from Accutane that have not resolved in the 4 years I have been off of it. These symptoms include anhedonia, emotional blunting, depersonalization, brain fog, cognitive decline.

See my post and stay in hypochondriac thread it's wrong what doing 

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11 hours ago, JohnSmith21 said:

Btw A LOT of what the guy who posted above me IS NOT TRUE. Most of it is not true. Some of those studies were done on rats, none of them on humans.


It appears as though you may need to refresh the page, as my entire post may not have loaded. The majority of the evidence I posted did pertain directly to humans. This includes the organic brain damage, altered bloodflow in brain, and elevated association with suicide compared to Prozac.

In regards to Accutane's apoptotic effects, are you disputing Accutane's mechanism of action? You essentially told me I posted falsehoods even though I cited all my sources. Retinol is popular as a cream because it is well known to increase cellular turnover rate. This has been established for decades, and this action is not limited to skin cells.
 
11 hours ago, JohnSmith21 said:
 I'm telling you this website has something called sample bias. Millions of people who take this drug and move on with their lives, very rarely will someone take a drug with no problems and post online saying "hey I took accutane everything went fine". The people who tend to come online have bad experiences
 
I never disputed that many have a positive experience with Accutane. But speaking of reporting discrepancies, the FDA acknowledges that instances of psychiatric side effects are potentially ten times higher than what is actually reported. These effects are why Accutane was nearly removed from the market a few decades ago. This explains why correlations can be difficult to find, and why it is important to focus on research that observes mechanism of action. You could also cross-compare side effect rates from one drug to the next, as all drugs are subjected to the under-reporting of side effects. In fact, let's do that right now:

"Compared with all drugs in the FDA's Adverse Event Reporting System database to June 2000, isotretinoin ranked within the top 10 for number of reports of depression and suicide attempt." - Source
 

"Interestingly, isotretinoin is the only non-psychotropic drug in the FDA's top 10 list of drugs associated with depression." - Source
 

11 hours ago, JohnSmith21 said:

The perfect example is the gentleman who posted above me. He has an absurd amount of posts in the "accutane damage" thread (which consists 95% of hypochondriacs) which signifies obsession.

 

Fascinating! Can I please see the source for that statistic? Thanks.

Edited by ACCUiTy_drANE

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1 hour ago, ACCUiTy_drANE said:

It appears as though you may need to refresh the page, as my entire post may not have loaded. The majority of the evidence I posted did pertain directly to humans. This includes the organic brain damage, altered bloodflow in brain, and elevated association with suicide compared to Prozac.

In regards to Accutane's apoptotic effects, are you disputing Accutane's mechanism of action? You essentially told me I posted falsehoods even though I cited all my sources. Retinol is popular as a cream because it is well known to increase cellular turnover rate. This has been established for decades, and this action is not limited to skin cells.
   
I never disputed that many have a positive experience with Accutane. But speaking of reporting discrepancies, the FDA acknowledges that instances of psychiatric side effects are potentially ten times higher than what is actually reported. These effects are why Accutane was nearly removed from the market a few decades ago. This explains why correlations can be difficult to find, and why it is important to focus on research that observes mechanism of action. You could also cross-compare side effect rates from one drug to the next, as all drugs are subjected to the under-reporting of side effects. In fact, let's do that right now:

"Compared with all drugs in the FDA's Adverse Event Reporting System database to June 2000, isotretinoin ranked within the top 10 for number of reports of depression and suicide attempt." - Source
 

"Interestingly, isotretinoin is the only non-psychotropic drug in the FDA's top 10 list of drugs associated with depression." - Source
 

 

Fascinating! Can I please see the source for that statistic? Thanks.

MILLIONS of people take this drug and less then 1% get long term side effects. Theres deadly 1% side effect called "ryes syndrome" (idk about speling) that pertains to asperin..... EVERY drug can have interactions with the body. And none of those studies are conclusive at all. Lawyers have field days with as many drugs as they can, and even whenthey were milking the accutane- collitus connection (which recently was thought to  be thought to Be the mandatory antibiotics you must take BEFORE accutane, and has been largely disproven) there were STILL no lawsuits about any of the NONSENSE your REACHING for in these studies. You hypochondriacs get pissed when people go against you in your obsession driven thread, so stay there instead of trying to put fear into people who need that drug. OP yes there are potential side effects that can happen with accutane there's no denying that. But I myself have taken it twice and am completly the  same lol, I know at least 9 other people who have taken it from my town and all of them are perfectly fine (with clear skin), and out of the thousands of people my derm treated he said only 1 person got a long term side effect, and that the few other people who got side effects the symptoms went away when the drug was discountinued. So let that speak for itself. Just like there's a 1% chance of dying in a  car accident (probably more tbh), there a very small chance of side unexpected side effects. If your son needs it DO NOT hesitate. Listen to your derm who is a medical professional who went to school for TEN YEARS, and not some snooty ignorant uneducated online hypochondriac who claim doctors don't know what they are talking about. Edited by JohnSmith21

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I too have a son, same age, who was facing the same decision.  Significant acne on face, back and chest.  He was under the care of a dermatologist and placed on oral antibiotics and multiple topicals on his first visit.  Accutane was discussed first visit as well.  I was desperate for him and researched Accutane extensively.  Second visit with minor improvement, the Accutane was being strongly suggested.  I resisted and continued the antibiotic and topicals.  After plateauing on this regimen and coverage issues with health insurance, i decided to try the Acne.org regimen.  It was our best decision.  He has remained on the antibiotics, stopped the other topicals and uses Acne.org regimen.  Significant clearing and healing with Acne.org.

For me, working in the healthcare industry, i wasn't willing to risk his long term health and happiness.  This website and the experiences shared were instrumental in my decision to not pursue Accutane.  

Its very hard to see our children suffer with severe acne.  I hope you find the right answers for your son.  

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2 hours ago, JohnSmith21 said:
Listen to your derm who is a medical professional who went to school for TEN YEARS, and not some snooty ignorant uneducated online hypochondriac who claim doctors don't know what they are talking about.

Actually, 37% of dermatologists agree with me that Accutane can cause psychiatric disturbances. I imagine the number is much higher for those who are actually immersed in the literature (not every MD is a researcher). So this isn't some extremist viewpoint.
 
2 hours ago, JohnSmith21 said:
You hypochondriacs get pissed when people go against you in your obsession driven thread, so stay there instead of trying to put fear into people who need that drug.

Talking about science, studies, and evidence is not fear-mongering. I don't really care who goes on this drug and who doesn't. But I do care about facts. And I have every right to post in the same threads you do.
 
2 hours ago, JohnSmith21 said:
Lawyers have field days with as many drugs as they can, and even whenthey were milking the accutane- collitus connection (which recently was thought to  be thought to Be the mandatory antibiotics you must take BEFORE accutane, and has been largely disproven)

Lawyers did us an incredible service in bringing Roche to court, as it brought to light patient memos and concealed clinical trials that revealed the mechanism of action in which Accutane can cause inflammatory bowel disease. Without legal action, we would have never found out about those studies or patient memos. That being said, it's really not unusual for unfavorable clinical trials to go unpublished.
 
2 hours ago, JohnSmith21 said:
So let that speak for itself. Just like there's a 1% chance of dying in a  car accident (probably more tbh), there a very small chance of side unexpected side effects.

That was exactly my thinking when I went on Accutane, but I lost that bet. I'm not saying anybody else will lose, but that was my experience. Edited by ACCUiTy_drANE

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I was in the same situation when my son was 17 years old I gave my son his first pill and after that decided to search on the Internet and told my son what I read.

I let him make the decision I didn't want to be responsible if something  happened, long story  short he decided against it, there has been alot of ups and downs over the last 7 years not gonna lie but ever since he turned 24 his acne just stopped now we are just working on scars with peels and dermaroller/stamp.
 

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2 hours ago, ACCUiTy_drANE said:

 


Actually, 37% of dermatologists agree with me that Accutane can cause psychiatric disturbances. I imagine the number is much higher for those who are actually immersed in the literature (not every MD is a researcher). So this isn't some extremist viewpoint.
 
Talking about science, studies, and evidence is not fear-mongering. I don't really care who goes on this drug and who doesn't. But I do care about facts. And I have every right to post in the same threads you do.
 
Lawyers did us an incredible service in bringing Roche to court, as it brought to light patient memos and concealed clinical trials that revealed the mechanism of action in which Accutane can cause inflammatory bowel disease. Without legal action, we would have never found out about those studies or patient memos. That being said, it's really not unusual for unfavorable clinical trials to go unpublished.
 
That was exactly my thinking when I went on Accutane, but I lost that bet. I'm not saying anybody else will lose, but that was my experience.
MOST demratotgists agree it can cause pyschiardirac disturbances (rarely), BUT they also agree that those sympotoms resolve when accutane is discontinued. When was on it I would feel lethargic and short tempered some days, yeah it's a strong drug, but It went away right after I stopped and was completely worth it. Let me ask you. What was your dose, for how long, and what side effects do u experience. I'm extremely curious 

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I think you are on the right track by attempting to put your son on the topicals first. Accutane is and should be the last resort. It's a very powerful drug and the mechanisms of action unknown. I cannot advise anyone to take it unless the acne is severe and debilitating. It just goes towards the notion of risk and reward.

I will say that if you do decide to put your son on it, make sure his vitamin A levels are nominal beforehand (side effects are linked to patients lacking adequate levels), make sure he isn't using other drugs while on it, and periodic status checks. Rest assured that millions have tolerated this drug successfully.

For genetic or other reasons unknown this drug unfortunately changed my life for the worse, many side effects, but that doesn't stop me from an objective point of view and sharing my research and knowledge on this powerful drug. I can't tell you how many doctors I talk to on a weekly basis that agree with me and tell me "yea, i tend to advise patients away from that drug."

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If he has the scarring type of acne, I would say go for it because scars on the face are up there with all the other "killer" potential side effects of accutane...((he may not understand the emotional/psychological scars that will mirror the physical ones in the future now, but if he doesn't go on it and then has the scars to deal with, he will most likely eventually regret not taking this drug...and you may too...))) the difference is that If he has that type of acne, he most likely WILL scar if he doesn't get on something powerful enough to nip it in the bud, and if he does go on accutane he only MIGHT experience problematic side effects...I went on accutane for this very reason and even though my cysts were quite isolated, they were bad enough to scar and I wasn't going to have that so I took the plunge.
I handled it very well and had no issues. It worked like a charm but I also took ridiculously good care of my health during that period of time (and took up the habits of a vampire when it came to the sun). I believe this is paramount as you want to reduce all other negative factors upon your son's health so that you, in turn, will only be dealing with one possibly negative factor (accutane) and thus reduce the risk of side effects.
Also...40 mg/Claravis (brand of accutane)
for 6 months was what I took so I can only vouch for this combination, some believe there is a slight difference between brands and ofcourse, dosages. 
 
 
As I advocate for accutane, at the same time, I understand that everyone is different.
Some people will even tell you to have him try "safer" methods such as retinoids before he goes on accutane..but i found out recently that "safer" options are not "safer" for everyone.
Yes, I had great skin for a little over 3.5 years post accutane...but then I went through a stressful time (unrelated to skin woes) in which I wasn't washing my face.
This lead to minimal build up and a few pimples.
Instead of just picking back up my gentle regimen, I went and casually used an unopened sample of a retinoid (think of it as the equivalent to accutane only in TOPICAL form) and within two uses, this stuff severely messed up my skin to the point that I am in tears on a daily basis because I can't believe such a simple decision lead to such a disaster. The result is both extreme mental (because of the look) and physical discomfort (severe burning, numbing, pulling sensations,etc).
It has been 5 months since the damages and my skin has not improved at all despite leaving it alone.
After going to 4 derms and even a burn center, I am just NOW starting to get somewhere as I'm being sent to yet another derm (by referral) who may know how to help me.
Now most people will hear this and say "you used it twice, and it's basically retin-a, the ''miracle cream', no WAY it could do ------ or ------ to your skin!!" 
And I would have said the same thing...if it didn't happen directly to ME.
 
I know from reading all the horror stories here and elsewhere, that I'm not the only one, and the same can be said about accutane. 
How crazy is it that a little cream did such damage to my skin yet accutane  left me completely unscathed?
...I think it comes down to....
We just all react differently,  and there's really no way of knowing if we will be lucky or unlucky when it comes to one thing or the other.
Everyone here is telling you their experiences but your son's experience is still going to be an unknown no matter how many people reply to your question.
You just have to weigh the risks vs the benefits, on both sides.
The risks of not taking the accutane, the risks taking it.
The benefits of taking it, the benefits of not taking it.
Personally, I had no good reason to be using the retinoid that messed up my skin so it should have been an easy decision if I had even took the time to check the scale....but with you, it will be harder to choose whilst weighing the options.
Unfortunately, I honestly don't think this site will make it any easier.
 
 
 

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