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Nikki-x

Starting acctuane

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Hi guys,
Sorry in advance for a really long post. 27 yr old Female from Uk. 
So I had my first appointment with my dermatologist today, I was quite scared and worried that they wouldn’t take me seriously when it came to my skin, I have mild but persistent cystic acne, maybe 3 or 4 cysts at the one time with some clogged pores. I have been dealing with it for 1.5 years persistently and have been back and forth to doctors on different antibiotic and tried some many topicals etc, also the birth control im on is meant to help with my hormones to help my skin but it just isn’t doing anything anymore. So anyway I went in with a list of things I have tried and he was very understanding and listened to me when I told him that although its mild the impact its having on my physically and emotionally and brings me down and im sick of it controlling my life. He said that although my acne is mild, but is persitent and because iv exhausted so much with little to no success he think it's the best option for me. He will start me on a low dose initially. I couldn't get bloods done today as i had eaten so im going to my own gp to get bloods done tomorrow then the derm will send me another appt for 2 to 3 weeks to go back and get weighed etc and get me started!

I know there is a lot of info on here in regards to skincare, side effects etc but just wanted to write this post to tell people about my situation and ask for advice on the following…..

I have a skincare routine but as im combination/oily I know I will need to change what products I’m using so would using new products that are heavier on the skin cause me to breakout or would it not really matter using completely new products as ill be taking Accutane and they won’t clog my pores?
Looking for recommendation on:
Gentle cleanser to use am and pm
Moisturiser for pm and one for am(preferably one with SPF so I’m only using one)
I know alot of people recommend cerave and cetaphil but maybe water based products without fatty alcohols? 

I know to get Aquaphor for my lips!

If I experience dry scalp and my hair is become dry and brittle, what are peoples fav shampoos and treatments to use?

Also should I continue with my normal skincare regime until the dryness etc starts setting in?

I suffer from dry cracked skin on my hands but have steroid creams and diprobase for that, but has someone used anything else for their body/hands that have helped? I do think my hands will get bad on Accutane as they are already quite bad right now with being dry and slightly cracked

I appreciate everyones response in advance,want to be fully prepared for this journey. Happy to hear peoples experiences and tips.

Thank you xx

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On 10/2/2017 at 6:07 PM, Nikki-x said:

Hi guys,
Sorry in advance for a really long post. 27 yr old Female from Uk. 
So I had my first appointment with my dermatologist today, I was quite scared and worried that they wouldn’t take me seriously when it came to my skin, I have mild but persistent cystic acne, maybe 3 or 4 cysts at the one time with some clogged pores. I have been dealing with it for 1.5 years persistently and have been back and forth to doctors on different antibiotic and tried some many topicals etc, also the birth control im on is meant to help with my hormones to help my skin but it just isn’t doing anything anymore. So anyway I went in with a list of things I have tried and he was very understanding and listened to me when I told him that although its mild the impact its having on my physically and emotionally and brings me down and im sick of it controlling my life. He said that although my acne is mild, but is persitent and because iv exhausted so much with little to no success he think it's the best option for me. He will start me on a low dose initially. I couldn't get bloods done today as i had eaten so im going to my own gp to get bloods done tomorrow then the derm will send me another appt for 2 to 3 weeks to go back and get weighed etc and get me started!

I know there is a lot of info on here in regards to skincare, side effects etc but just wanted to write this post to tell people about my situation and ask for advice on the following…..

I have a skincare routine but as im combination/oily I know I will need to change what products I’m using so would using new products that are heavier on the skin cause me to breakout or would it not really matter using completely new products as ill be taking Accutane and they won’t clog my pores?
Looking for recommendation on:
Gentle cleanser to use am and pm
Moisturiser for pm and one for am(preferably one with SPF so I’m only using one)
I know alot of people recommend cerave and cetaphil but maybe water based products without fatty alcohols? 

I know to get Aquaphor for my lips!

If I experience dry scalp and my hair is become dry and brittle, what are peoples fav shampoos and treatments to use?

Also should I continue with my normal skincare regime until the dryness etc starts setting in?

I suffer from dry cracked skin on my hands but have steroid creams and diprobase for that, but has someone used anything else for their body/hands that have helped? I do think my hands will get bad on Accutane as they are already quite bad right now with being dry and slightly cracked

I appreciate everyones response in advance,want to be fully prepared for this journey. Happy to hear peoples experiences and tips.

Thank you xx

Have you seen topic 'repairing the long term damage from accutane?'

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theres no way you can prepare for the potential long term side effects. thousands of peoples lives are destroyed by this drug. this dries out your entire body. Either stop taking this drug or prepare for confusion, psychotic mental states, chronic fatigue syndrome, chronic inflammatory bowel disease, joint pain, back pain, dry eyes and many more. The daughter of a friend of my mother has become permanently dry down there unable to have sex even with lubricants. I have googled this and there are a few forum entries on the web of women complaining about this.

Try phototherapy, it can work great for acne. try a ketogenic diet. There are tribal groups that have no acne. They also eat no sugar (refinded sugar, bread, milk...)

Watch this documentary: 
A doctor from the uk and his alternative acne treatment at 35:55

 

 

Edited by draci

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Hi there. Have a look at" Roaccutane on th NHS: A UK blog ". Good product recommendations . There's a shampoo recommendation on there. All the very best to you with your treatment. Week 12 for my daughter. All going well. Just dry lips. Using blisteze and Vaseline. Skin isn't dry at mo. Just using cetaphil cleanser wash and dove soap. Still active acne but things are happening. Keep positive and keep posting! 

That blog's by Jollyhohnson. DW75 is doing a really informative blog too that is really worth following. 

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the long term side effects show up after, yes, AFTER the treatment. Most people are well for a couple of weeks/months after finishing the last pill.

Only side effects I had during the treatment were dry lips and dry nose. I was well for 2 months after the treatment, then hell broke loose.

The long term side effects sound so extreme and absurd that it is hard to believe. After all, they would never allow a drug with these side effects right? The long term side effects are so extreme and absurd that the people who write about them on the internet sound like a bunch of crazy people.

You really need to ask yourself: how does a drug get rid of acne permanently? And the only plausible answer is: by changing the body permanently. They don't even know how the drug works. It was originally used against brain cancer. they noticed that as a side effect it cures acne...

You have a fairly high chance of not having long term side effects I would say. Nobody can tell you how high that chance really is though. Would you press a button that could give you the side effects I mentioned with a 1, 2, or maybe 5% chance?

Edited by draci

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On 10/3/2017 at 10:54 PM, Juwalker said:

Hi there. Have a look at" Roaccutane on th NHS: A UK blog ". Good product recommendations . There's a shampoo recommendation on there. All the very best to you with your treatment. Week 12 for my daughter. All going well. Just dry lips. Using blisteze and Vaseline. Skin isn't dry at mo. Just using cetaphil cleanser wash and dove soap. Still active acne but things are happening. Keep positive and keep posting! 

That blog's by Jollyhohnson. DW75 is doing a really informative blog too that is really worth following. 

Hi Juwalker, thanks for your supportive response! Oll
On 10/3/2017 at 10:54 PM, Juwalker said:

Hi there. Have a look at" Roaccutane on th NHS: A UK blog ". Good product recommendations . There's a shampoo recommendation on there. All the very best to you with your treatment. Week 12 for my daughter. All going well. Just dry lips. Using blisteze and Vaseline. Skin isn't dry at mo. Just using cetaphil cleanser wash and dove soap. Still active acne but things are happening. Keep positive and keep posting! 

That blog's by Jollyhohnson. DW75 is doing a really informative blog too that is really worth following. 

On 10/3/2017 at 10:54 PM, Juwalker said:

Hi there. Have a look at" Roaccutane on th NHS: A UK blog ". Good product recommendations . There's a shampoo recommendation on there. All the very best to you with your treatment. Week 12 for my daughter. All going well. Just dry lips. Using blisteze and Vaseline. Skin isn't dry at mo. Just using cetaphil cleanser wash and dove soap. Still active acne but things are happening. Keep positive and keep posting! 

That blog's by Jollyhohnson. DW75 is doing a really informative blog too that is really worth following. 

Hey Juwalker, thanks for your supportive response. Thanks, ill defo check that out. 
What severity is your daughter acne? Did she have a bad Initial breakout? 
How do i get to that blog? 
Thanks
Nikki

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Moderate- severe. She is 13 now but had acne since age 9, so gradually got worse, despite lots of different topical meds and 3 different antibiotics. She is still having breakouts of varying degrees in month 4, but the progress is obvious because certain areas of her skin are clearing now. Her forehead is almost free of comedones now with only a couple of active spots on that area. Back is much improved too. Face is slower but things are defo happening.

Type in Jollyhohnson into the Search function at the top of the page and you will find her posts. You can click on the Roaccutane on the NHS, a UK blog . Do the same with DW75. 

Thomas Deven and Jasmine222 are both on accutane too. In fact, perhaps if you search for "accutane" you will find other blogs. Lots of people to learn from. All the best. :smileys_n_people_82:

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good luck, I hope everything goes well for you.

2 hours ago, Juwalker said:

Moderate- severe. She is 13 now but had acne since age 9, so gradually got worse, despite lots of different topical meds and 3 different antibiotics. She is still having breakouts of varying degrees in month 4, but the progress is obvious because certain areas of her skin are clearing now. Her forehead is almost free of comedones now with only a couple of active spots on that area. Back is much improved too. Face is slower but things are defo happening.

Type in Jollyhohnson into the Search function at the top of the page and you will find her posts. You can click on the Roaccutane on the NHS, a UK blog . Do the same with DW75. 

Thomas Deven and Jasmine222 are both on accutane too. In fact, perhaps if you search for "accutane" you will find other blogs. Lots of people to learn from. All the best. :smileys_n_people_82:

they give this to 13 year olds? You  know that it is proven to pass the brain barrier and decrease brain activity? 

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Draci : the minimum age is 12. A derm recommended she go on it: She was miserable and in a state from bullying and the physical and psychological pain of severe acne. It was the right choice and I am going to believe the doctors and be positive. She is doing great. I have researched all the side effects and I know what I am doing. Not interested in scare stories. 

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21 hours ago, Juwalker said:

Moderate- severe. She is 13 now but had acne since age 9, so gradually got worse, despite lots of different topical meds and 3 different antibiotics. She is still having breakouts of varying degrees in month 4, but the progress is obvious because certain areas of her skin are clearing now. Her forehead is almost free of comedones now with only a couple of active spots on that area. Back is much improved too. Face is slower but things are defo happening.

Type in Jollyhohnson into the Search function at the top of the page and you will find her posts. You can click on the Roaccutane on the NHS, a UK blog . Do the same with DW75. 

Thomas Deven and Jasmine222 are both on accutane too. In fact, perhaps if you search for "accutane" you will find other blogs. Lots of people to learn from. All the best. :smileys_n_people_82:

thats great thank you very much ☺x

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5 hours ago, Juwalker said:

Draci : the minimum age is 12. A derm recommended she go on it: She was miserable and in a state from bullying and the physical and psychological pain of severe acne. It was the right choice and I am going to believe the doctors and be positive. She is doing great. I have researched all the side effects and I know what I am doing. Not interested in scare stories. 

I understand, acne was a horrible experience for me as well during highschool. Its just that the long term side effects that I have been experiencing for more than a decade now are much worse and I wish someone would have kept me from taking it when I was 16. I see it as a duty to save others. How should I go about this if not warn of the possible long term irreversible side effects?
 

I asked my derm back then about those horrible side effects I read about in the internet and she told me: "oh, don't worry, its not true, the internet is full of false information, quite to the contrary, Isotretinoin is used against cancer and against wrinkles so it can only be good". She assured me that all side effects would go away within a few weeks after the treatment. Unfortunately things turned out very differently.
 

Edited by draci

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Your daughter is already taking it and you seem determined to go through with it. Let me make one suggestion. If the acne returns after a few months don't put her on another course, you will increase the likelyhood of her suffering permanent side effects. If the acne comes back please try the laser treatments that are shown in the videos I linked to above. Edited by draci

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23 hours ago, Juwalker said:

Draci : the minimum age is 12. A derm recommended she go on it: She was miserable and in a state from bullying and the physical and psychological pain of severe acne. It was the right choice and I am going to believe the doctors and be positive. She is doing great. I have researched all the side effects and I know what I am doing. Not interested in scare stories. 

I seriously hope you don't regret your words.
I never once went on a forum until the horrific side effects of accutane affected our lives.
Call it scare stories if you like but we are in the thousands.
Have you ever requested to see MHRA or FDA list of reported side effects because I have.
I am not going to list the side effects your daughter may end up sufferings from - post accutane I might add - but don't kid yourself
that these side effects are rare because they are not. MHRA and FDA also state that only 1% of people ever report their side effects so  the truth
in terms of adverse side effects may be staggering.
I commend Draci for warning others of the side effects because no doubt he is dealing with a lot.

The European Medical Agency are just about to order an up-date of the PIL to include erectile dysfunction and diminished libido which for many seem to be permanent.
Mental health issues are also being up-dated.
Accutane causes the same type of problems as thalidomide.
Have you seen the rates for suicide - many years post accutane because living with the side effects becomes impossible.
Trust in your dermatologist - but why don't you ask them about how much research they actually do and I bet you find it will be practically nil.
Sufferers from accutane do their research - we know what we are talking about.
I really do hope that your daughter is one of the lucky ones and that she is able to get rid of her acne and live a healthy life going forward.
I sighed a breath of relief when accutane was ceased not realising that the hell was all in front of us!

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On 02/10/2017 at 7:07 PM, Nikki-x said:

Hi guys,
Sorry in advance for a really long post. 27 yr old Female from Uk. 
So I had my first appointment with my dermatologist today, I was quite scared and worried that they wouldn’t take me seriously when it came to my skin, I have mild but persistent cystic acne, maybe 3 or 4 cysts at the one time with some clogged pores. I have been dealing with it for 1.5 years persistently and have been back and forth to doctors on different antibiotic and tried some many topicals etc, also the birth control im on is meant to help with my hormones to help my skin but it just isn’t doing anything anymore. So anyway I went in with a list of things I have tried and he was very understanding and listened to me when I told him that although its mild the impact its having on my physically and emotionally and brings me down and im sick of it controlling my life. He said that although my acne is mild, but is persitent and because iv exhausted so much with little to no success he think it's the best option for me. He will start me on a low dose initially. I couldn't get bloods done today as i had eaten so im going to my own gp to get bloods done tomorrow then the derm will send me another appt for 2 to 3 weeks to go back and get weighed etc and get me started!

I know there is a lot of info on here in regards to skincare, side effects etc but just wanted to write this post to tell people about my situation and ask for advice on the following…..

I have a skincare routine but as im combination/oily I know I will need to change what products I’m using so would using new products that are heavier on the skin cause me to breakout or would it not really matter using completely new products as ill be taking Accutane and they won’t clog my pores?
Looking for recommendation on:
Gentle cleanser to use am and pm
Moisturiser for pm and one for am(preferably one with SPF so I’m only using one)
I know alot of people recommend cerave and cetaphil but maybe water based products without fatty alcohols? 

I know to get Aquaphor for my lips!

If I experience dry scalp and my hair is become dry and brittle, what are peoples fav shampoos and treatments to use?

Also should I continue with my normal skincare regime until the dryness etc starts setting in?

I suffer from dry cracked skin on my hands but have steroid creams and diprobase for that, but has someone used anything else for their body/hands that have helped? I do think my hands will get bad on Accutane as they are already quite bad right now with being dry and slightly cracked

I appreciate everyones response in advance,want to be fully prepared for this journey. Happy to hear peoples experiences and tips.

Thank you xx

check out the women in this thread, maybe you can relate more to their problems with permanent hair loss after accutane. This is no joke, please take this medication serious. Consider tapering down and stopping the treatment.

https://www.acne.org/messageboard/topic/363864-my-f19-accutane-telogen-effluvium-journey-pics/?page=5

I lost half of my hair and my marriage after two months and still the shedding like rain continues horribly. What do I do to stop it ... I burn out of sadness

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Draci and Hatetane. Your experience is not everyone elses experience of accutane. You have your thread which is virtually always listed in the latest on the forums list. We have all read it many times. I was following it but I am so annoyed and disgusted at the way you keep hijacking other peoples threads and trying to frighten them that I have unfollowed you now. What you are doing is not working. We are all entitled to our own  opinions and  are able to  make our own choices. You need to back off unless you want to destroy the credibility of your thread.
We are all acne sufferers together. Our different experiences and views should be able to co-exist on the same forum. No one view should be used to oppress the other. 

Edited by Juwalker
added a bit more

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On 19/10/2017 at 1:11 AM, Juwalker said:

Draci and Hatetane. Your experience is not everyone elses experience of accutane. You have your thread which is virtually always listed in the latest on the forums list. We have all read it many times. I was following it but I am so annoyed and disgusted at the way you keep hijacking other peoples threads and trying to frighten them that I have unfollowed you now. What you are doing is not working. We are all entitled to our own  opinions and  are able to  make our own choices. You need to back off unless you want to destroy the credibility of your thread.
We are all acne sufferers together. Our different experiences and views should be able to co-exist on the same forum. No one view should be used to oppress the other. 

exactly Juwalker, thats why I am entitled to post in any thread just as you are. If someone had warned me 10 years ago I would have made a different choice. Actually, while on my second course, my psychologist that I was seeing to cope with acne called my family after hearing about the dangers of the drug on a congress, i stopped immediately but it was already too late.  Im not judging anyone who takes accutane and I will try to scare as little as possible. I just think everybody deserves knowing what it can potentially do to you.

As you see in my previous message ours is not the only thread. Apparently there are dozens of women sufferring from hair loss and thinning hair. Acne.org is not the only place people come to talk about the long term side effects. there are many other forums on the internet. I speak 4 differnet languages. there are people complaining about the same long-term side effects on dozens of forums in all 4 different languages.

My mother was so happy back then that there was finally something that would cure me. she couldnt handle me crying to her every night about my acne. For some it is the miracle drug, for others it is a horror trip.

Good luck to everyone trying it. I just want to make sure everybody exhausts all other treatment options first.

I know it sucks! In our superficial society where its all about looking pretty on your facebook, instagram, snapchat... As a teenager with acne you feel horrible and often get bullied. I felt the hopelessness too and was disgusted at myself... But I still wouldn't have taken accutane if I would have known what it can do.

Parents are busy with their day jobs and their own problems and are happy when they find a miracle drug that can cure their children and stop the suffering. So accutane is a no brainer, I understand.

With all the warnings from sufferers and researchers around the world I genuinely feel that it is my duty to let people know. As someone with acne or as a parent of a child with acne these are signs that have become so obvious and alarming that they shouldnt be ignored.

This is from a research paper from 2016. It is still not known how this drug works!!! but programmed cell death also called apoptosis might be the reason for the side effects: "apoptosis (programmed cell death) may be the underlying and unifying mechanism of the adverse effects of isotretinoin on neural crest cells (teratogenicity), hippocampal neurones (depression), epidermal keratinocytes and mucosa cells (mucocutaneous side-effects), hair follicle cells (telogen effluvium), intestinal epithelial cells (inflammatory bowel disease), skeletal muscle cells (myalgia and release of creatine kinase), and hepatocytes (release of transaminases and very low-density lipoproteins)."
https://www.researchgate.net/publication/308699086_Apoptosis_May_Explain_the_Pharmacological_Mode_of_Action_and_Adverse_Effects_of_Isotretinoin_Including_Teratogenicity
Edited by draci

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11 hours ago, draci said:
exactly Juwalker, thats why I am entitled to post in any thread just as you are. If someone had warned me 10 years ago I would have made a different choice. Actually, while on my second course, my psychologist that I was seeing to cope with acne called my family after hearing about the dangers of the drug on a congress, i stopped immediately but it was already too late.  Im not judging anyone who takes accutane and I will try to scare as little as possible. I just think everybody deserves knowing what it can potentially do to you.

As you see in my previous message ours is not the only thread. Apparently there are dozens of women sufferring from hair loss and thinning hair. Acne.org is not the only place people come to talk about the long term side effects. there are many other forums on the internet. I speak 4 differnet languages. there are people complaining about the same long-term side effects on dozens of forums in all 4 different languages.

My mother was so happy back then that there was finally something that would cure me. she couldnt handle me crying to her every night about my acne. For some it is the miracle drug, for others it is a horror trip.

Good luck to everyone trying it. I just want to make sure everybody exhausts all other treatment options first.

I know it sucks! In our superficial society where its all about looking pretty on your facebook, instagram, snapchat... As a teenager with acne you feel horrible and often get bullied. I felt the hopelessness too and was disgusted at myself... But I still wouldn't have taken accutane if I would have known what it can do.

Parents are busy with their day jobs and their own problems and are happy when they find a miracle drug that can cure their children and stop the suffering. So accutane is a no brainer, I understand.

With all the warnings from sufferers and researchers around the world I genuinely feel that it is my duty to let people know. As someone with acne or as a parent of a child with acne these are signs that have become so obvious and alarming that they shouldnt be ignored.

This is from a research paper from 2016. It is still not known how this drug works!!! but programmed cell death also called apoptosis might be the reason for the side effects: "apoptosis (programmed cell death) may be the underlying and unifying mechanism of the adverse effects of isotretinoin on neural crest cells (teratogenicity), hippocampal neurones (depression), epidermal keratinocytes and mucosa cells (mucocutaneous side-effects), hair follicle cells (telogen effluvium), intestinal epithelial cells (inflammatory bowel disease), skeletal muscle cells (myalgia and release of creatine kinase), and hepatocytes (release of transaminases and very low-density lipoproteins)."
https://www.researchgate.net/publication/308699086_Apoptosis_May_Explain_the_Pharmacological_Mode_of_Action_and_Adverse_Effects_of_Isotretinoin_Including_Teratogenicity
Draci, I am only happy that some people take heed and I have many personal messages thanking me for the warnings. Some do decide to take it anyway and that is absolutely fine but we are only doing what dermatologists should be doing because they are not!
Didn't know there were rules about threads etc - better look that one up lol
Draci - any idea why people ask for advice but then don't want to listen?
Would you believe that one person on this forum told me that they promote accutane so that there will be more victims.
They figure that the more victims that there are the more likelihood of some institution stepping in to find a cure - maybe they are not so crazy after all but at what cost?
I truly hope that with the increase of prescriptions we don't see more victims but that is hardly likely to be the case.
My advice to anyone is to look at scientific papers and the real concerns that have been raised by all sorts or genuine people who are prepared to
go on record. Namely Dr Bremner, Dr Healy, politicians and so many more.
You can't go on a forum and ask if something is safe - you can only ask what other peoples experiences are.
I truly pray to god that victims are few and far between.

Good luck everybody

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2 hours ago, hatetane said:
Would you believe that one person on this forum told me that they promote accutane so that there will be more victims.
They figure that the more victims that there are the more likelihood of some institution stepping in to find a cure - maybe they are not so crazy after all but at what cost?
Wow, this person must suffer a lot and be desperate. I don't think this is the best way forward. Regardless of what we do on these forums, there are millions of people taking accutane. At best we can stop a handful of people who read our posts, but that is good enough for me. These things take time. As research advances it will become more clear. I am afraid that rather than accutane being banned it is more likely that a better acne treatment is found someday and that accutane as a result is no longer prescribed. Until then acne patients will be exposed to the risk.

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