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Original poster

Can someone talk to me about roaccutane?

61 replies

Mondayforthebin · 13/02/2023 07:22

DS has suffered from acne since early teens and it’s getting worse. Been to Dr many times and been given lots of different things to try (currently on low dose antibiotics and antibiotic face wash) but they either don’t really have much effect or work for a little while and then stop. We’ve also tried other things like change of diet but again had no effect

The Dr has now said the next step is roaccutane but I’ve heard some real horror stories about side effects so I really wanted to hear positive experiences as DS is so miserable about his skin and it looks to be getting worse. Also if anyone had any alternative they used as a last ditch attempt before trying it. I’ve read about Skin and Me really helping but don’t know much about it.

thank you.

OP posts:
VikingLady · 13/02/2023 23:55

Roaccutane saved my sanity as a teen, and stopped me feeling suicidal from the social impacts of severe acne. It genuinely changed my life. I don't even have scars.

I did have side effects (aching joints, nose bleeds from dry skin, thinner hair) but for me it was totally worth it.

As a warning though - it does takes a lot longer to kick in than you expect. I expected an immediate effect but it took until three months into the four month course to really get going. That three months was pretty bad, mainly because I hadn't known it would take so long to work and I assumed it hadn't worked.

Catdaft · 14/02/2023 00:01

I was on it for 6 months in 2018. My acne was awful and now I haven't got a mark on it! The only annoying thing was dry lips and skin and sore joints. Totally worth it for me personally.

MrsBungle · 14/02/2023 00:10

I took Roaccutane for my acne over 20 years ago now. The only side effect I had was that I didn’t need to wash my hair every day (unfortunately the grease returned to my head once I stopped it!) and after suffering for around 15 years I finally had clear skin. My dermatologist fully explained the small risk of depression and kept an eye on me in that regard.

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GerronBuzanDoThaWomwok · 14/02/2023 00:14

very slight nosebleeds and dry skin-never offered liver function tests, but this was in 1987/88. Literally saved my life.

OneTitWonder · 14/02/2023 00:21

My 15yo DS was on it for 13 months, and got incredible results. Acne completely gone, his skin is clear to the point that he gets people commenting on what beautiful skin he has. He didn't have any issues with serious side effects, his only issue was very dry lips which would crack and bleed, but other than managing that, it really was an amazing treatment for him and we'd very much recommend trying it.

Mamafromthebeach · 14/02/2023 01:55

You can also talk to your doctor about doing a low dose for longer. My 2nd dd did a second round and she did this and the side effects were much lower than her first round.

I am so sorry to hear of some of the distressing stories of those who suffered terrible side - effects particularly to mental health. Our dermatologist told us at the outset that it was possible and we did monitor for changes - thankfully we had none.

I don’t want to lessen anyone’s experience at all - but my eldest daughter was so horrified by her acne it was a struggle to get her to go to school and leave the house some days. Roaccutane improved her confidence so much and now she rarely wears foundation/concealer. It is hard to know the right thing to do. Acne is horrible.

DFWM · 14/02/2023 02:09

I'm currently on roaccutane and I am on medication for my mental health. They keep an eye on you and see you every 4 weeks and get you to do blood tests and complete a little questionnaire on what side effects you are experiencing. They also advise to get family and friends to keep a close eye on your mood so that changes can be reported before the effect on mental health gets to a bad extent.

My mental health has been fine so far, but I do suffer with constipation badly and my lips are very very dry. He will need a lot of intense moisturising lip balm. I also get the odd nose bleed. But other than that, I'm good on it and it's actually working!

Eatentoomanyroses · 14/02/2023 08:30

DevastatedandDistraught · 13/02/2023 22:11

My 15 year old was prescribed this poison for mild acne. It killed her.
She was overwhelmed by sudden suicidal thoughts, completely out of the blue, after 6 months on a low dose of this drug, and she took her own life.

Dermatologists will downplay the dangers of this drug and they will tell you it is safe. It is not. It can have lasting effects for some people and is linked with suicide and long term depression. It can cause permanent chemical castration and leave, usually males, unable to perform sexually, which in itself takes a huge toll on mental health.

This drug was originally developed as a chemotherapy drug to treat brain cancer. It contains huge levels of Vitamin A which is extremely toxic in concentrated doses. The problem is, no one knows who will be ok on this drug and who will not. It’s like playing Russian roulette.

I don’t mean to alarm OP with my post but you need to know what the medical professionals will not tell you. You do not want to be me living this nightmare that is my life since my girl died. If Roaccutane had this effect on my beautiful girl, who was the happiest, most chilled person, with so many dreams for her future, it can happen to anyone. Indeed, there have been over 100 deaths from suicide according to the Yellow Card Scheme, and in all likelihood the number will be much higher as most people don’t make the connection to this drug, especially if suicide happens after treatment ends, and most don’t know how to report. Sadly, I am in contact with other many parents who have lost their child to this drug.

Please, please do not allow yourself to be persuaded as to the safety of this drug.

I’m so sorry for your loss.

YukoandHiro · 14/02/2023 08:32

Please do it. I never did and I'm 40 now and still suffering cystic acne and now the doctors say the risks are higher due to entering menopause

Eatentoomanyroses · 26/02/2024 14:47

DevastatedandDistraught · 13/02/2023 22:11

My 15 year old was prescribed this poison for mild acne. It killed her.
She was overwhelmed by sudden suicidal thoughts, completely out of the blue, after 6 months on a low dose of this drug, and she took her own life.

Dermatologists will downplay the dangers of this drug and they will tell you it is safe. It is not. It can have lasting effects for some people and is linked with suicide and long term depression. It can cause permanent chemical castration and leave, usually males, unable to perform sexually, which in itself takes a huge toll on mental health.

This drug was originally developed as a chemotherapy drug to treat brain cancer. It contains huge levels of Vitamin A which is extremely toxic in concentrated doses. The problem is, no one knows who will be ok on this drug and who will not. It’s like playing Russian roulette.

I don’t mean to alarm OP with my post but you need to know what the medical professionals will not tell you. You do not want to be me living this nightmare that is my life since my girl died. If Roaccutane had this effect on my beautiful girl, who was the happiest, most chilled person, with so many dreams for her future, it can happen to anyone. Indeed, there have been over 100 deaths from suicide according to the Yellow Card Scheme, and in all likelihood the number will be much higher as most people don’t make the connection to this drug, especially if suicide happens after treatment ends, and most don’t know how to report. Sadly, I am in contact with other many parents who have lost their child to this drug.

Please, please do not allow yourself to be persuaded as to the safety of this drug.

Just came across this thread searching for info as have been offered roaccutane and saw your post. I’m so sorry for what happened to your daughter. Thank you for taking the time to warn people. I think I’ll be declining the prescription.

LostittoBostik · 26/02/2024 19:57

I've had cystic acne my whole life but I don't want to try it because I suffer with anxiety and my mum has had periods of suicidal ideation.
I'm in my 40s now and still just battle my skin as best I can.

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