Can someone talk to me about roaccutane?

[Mondayforthebin]

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.

DS tried everything with minimal impact, then roaccutane worked really well for him. No bad side effects, on it for about 12/14 months and he's been off it two months and so far no new flare up.

I do understand you want to try alternatives first, but acne that bad can be really miserable for teens. What does your DS think? Have you explained all the side effects and potential issues to him?

My 2 girls have taken it. One dd had one course, the other had to have a second course - the second round was over a longer period at a lower dose.

Both now get the odd spot but nothing like before.

They both tell me that many of their friends also took it.

my kids were closely monitored (monthly) by the dermatologist - you can always stop if you want to or lower the dose.

The main side effects were extreme dryness ( moisturiser and lip balm are necessary always) and a few minor skin infections from the dryness ( mostly in corner of lip).

I would listen to your Dr - Acne is awful and can really damage self-esteem.

My 14 year old daughter has just finished an 8 month course, she’d only had issues for a year prior but was beginning to get some cystic spots and was very self conscious.

we tried topical tretinoin prior which worked for a bit and antibiotics which didn’t work.

The dermatologist we saw prefers low dose - less purging, less likely to scar - and it seemed to take 4 months to make any difference at all but once the spots went away they didn’t come back. Her skin is flawless - no scarring, no pigmentation, it looks like she’s never had a single spot in her life. I am so grateful.

We were warned about serious side effects but told they were rare but that she would get dry lips/hair. The lips were a pain, we tried loads of lip balms, chapsticks etc and she carried them with her everywhere but that was all, really. She was swimming competitively and her hair got a bit dry, but not noticeably, and we just needed to deep condition it a bit.

I was nervous too but it was worth it

It changed me and my 2 siblings lives, for the better I will add! No side effects other than dryness. Everything was monitored very closely. We’ve never had a problem with acne since except when I was pregnant. They were both teens when they had it and my only regret is waiting until my mid twenties to try it.

I used it in my early 20s and I wish souch that I had been given it in my teens (although it was less widely used then tbf). I could have avoided years of painful and unsightly cysts, and permanent scarring.

The dryness can be managed with emollients, and it was totally worth it.

I’ve done two rounds of Roaccutane. I’ve heard, by the way, that it can be more effective for men as they don’t have the hormonal changes that women have.

With both rounds, Roaccutane worked from the first pill. Within a month, my skin was completely clear. I remember standing at a mirror with my foundation and couldn’t find anywhere it was needed. I was lucky and didn’t experience depression. It actually made me happier as my skin looked good. The downsides: I found the first course hard going. My skin and lips were very dry. So were my eyes and my Achilles were tight whenever I started to walk after sitting for a while. It was worth it though and the side effects went when I finished the course. My blood tests were fortunately always normal.

The results of round 1 didn’t last long and O was prescribed more. I was told that they would be unlikely to give me a third round due to diminishing returns. The side effects were so much less this time. The great results lasted 8 years.

A few years ago, my skin deteriorated again. I decided to try Skin and Me. It has worked, but I’m not sure how much longer it will work for as they can’t include the antibiotic component indefinitely. It’s also an on-going cost.

What I will say, is that I think I have problem skin and will always have problem skin. So so many people report fantastic permanent results with Roaccutane.

one small tip: if your DS goes on Roaccutane, try to wean him off lip balm afterwards. I was on lip bam for years, it caused a sensitivity and horrendous dryness around my lips (looked and felt terrible). I ended up paying for a private dermatology appointment to fix it.

Best of luck to your DS- acne is horrible to deal with.

Like you my DS tried everything and we were really, really reluctant to try. Took it fir 6 months and the acne has gone.

I now feel guilty that we didn't try it sooner as he had some scarring.

My 16 year old is on it currently - he is on month 4 and it is making a big difference to his skin although its definitely not "better" yet. He is likely to need laser for some scarring but I can definitely see that we are getting there! No side effects for him other than the lip dryness.

I’ve used it myself as a teen and I had no side effects whatsoever apart from dryness. I remember I had to do liver function and pregnancy tests from time to time while I was taking it, but this wasn’t in the uk and it might not be the protocol there.

No side effects for him other than the lip dryness

Oh yes a really good lip balm is a must.

I've remembered now that DS did have some nose bleeds at first but he does have very dry skin usually caused by a different condition so it probably was an unusual side affect.

I was prescribed twice when I was younger. Only side affect was very dry skin.

Hi OP. I went on Roaccutane during lockdown and I can hands down say it was the best decision I ever made. I suffered from heavy cystic acne for years and finally made the plunge to go private as the NHS wait list was 6 or so months.

I had symptoms such as severe backache and headaches, very very dry skins that needs moisturising 4 times a day. Very dry and cracked lips that would bleed (Vaseline!)
Hair loss but only very minor, weight gain and my skin would peel. But the pros massively outweigh the cons. 2 years on I still have no acne and my skin is flawless.

You cannot drink on it, as it will severely damage your liver that's why you require routine blood tests to see how your liver is holding up.

Also just to add. It took around 3 months for my acne to start properly clearing and after month 5 it was gone.

My DS took it for 6 months at the age of around 16 after trying everything else. It worked like a bloody miracle and he has gorgeous skin now.

We made a conscious decision for him to take it during spring & summer so that he’d be at less risk of depression, as he does suffer from low mood in the darker months. Obviously this meant he had to be really careful in the sun, but he had no problems at all.

My sister went on a six month course. It worked.

The dryness was terrible the first few weeks though. I mean, really awful. She battled through with various ointments etc. and was pleased she did.

I would really recommend roaccutane. It made such a difference to my acne when I had it in my 20s. Think I had to have another course after a couple of years, but no side effects other than dry skin.

I also know 2 or 3 other people who have taken it with no nasty side effects and it's worked wonders.

I took this many years ago . I needed two courses , which is slightly unusual . Made a massive difference to my severe acne . Only side effects were dry skin and lips, but worth it for the benefits . Girls/ women need to prevent pregnancy and I also remember some blood tests to ? check liver function .

My son took it for 6 months after trying various other things over the counter and prescribed.

As for side effects, he kept on top of the dryness with moisturiser. His lips were very dry. He had some aching and couldn’t do as much exercise/sport as normal and he had some low mood but nothing too bad.

He’s very glad he took it as his skin is now completely clear and he’s been off it for a couple of years. He’s been very lucky to have no scarring either. I know there are some links to suicide which are obviously awful, but our dermatologist said in most cases it’s well tolerated.

It worked for my 18yo but only temporarily. He started getting spots again after about 18 months. Not as bad, granted , but definitely there.

I have Rosacea - at its very worst, many years ago, it resembled proper acne (the treatment of Rosacea and acne is the same). I'd tried every single antibiotic going, every face wash, cream, etc. Then a Dermatologist put me on Roaccutane, and the difference was astonishing! Within a couple of days, there was an improvement. After 10 days, other people really noticed. After the course of tablets, my skin was completely clear! I ended up having further courses of Roaccutane, over a few years. Apart from dry eyes (use eye drops) and a dry throat (drink more), I didn't have any problems.

TRY IT, you honestly won't believe the difference.

I was on roaccutane as an adult for two 8 month courses across 2 years, 10 years ago.

It is an incredible drug for acne. No doubt.

Initially he’ll get loads of blackheads as the skin dries out, but I barely get a pimple now.

Strongly recommend a sticky lip balm like Dr Lipp as nothing else helps and the dryness is awful.

Gotta say though, they lay on the depression/suicide side effect thing heavily and I never had an ounce of it. Was far more depressed with acne than with dry lips! 🤣

DS took it for a year. He's autistic with significant sensory processing difficulties and even he managed the side effects. It left him with really clear skin.

He stopped in August last year. And unfortunately his spots have returned. Not to the extent of before, so we are keeping a watchful eye on it at the moment. He was on a lower dose (20mg) and they estimated that he had taken enough cumulatively, so it's a shame it hasn't completely worked for him.

Thanks all so much - it's so good to hear the positives, I think I'd only read all the awful things about it causing depression and other mental health issues (both of which I struggled with hence me being cautious). He's been quite excited about prospect of something actually working and I wouldn't stand in his way as I can see how much it effects his confidence.

I never experienced Teen acne but around 22 I started getting cystic acne (large painful lumps that would stay for months) I was referred and tried antibiotics/creams etc it went on for 3 yrs and was horrendous, not only as it was extremely painful but I lost all confidence and would not go out. Finally went onto Roaccutane after delaying for a year because I was scared of side effects. Completely cleared it up. Only side effect was dry lips. Clear for 20 years and hit my early 40s and it came back so ended up having second course and again worked without any other side effects. Completely clear again. I’m hoping that is the last time but wouldn’t hesitate to use it again. (Especially as my dermo reckons it’s why at 47 I have barely any wrinkles because I’ve had two prolonged periods of pure Vit A pumped into my system 😜)

And tip for anyone this lip balm almost completely stops the dry lips (which is not to be taken lightly as they are severely dry) Dr Dan Cortibalm

www.ebay.co.uk/p/2306096493

By the way I know a few dozen people who have used it (my generation and now friends' teenagers) and not one of them has experienced depression or abnormal liver function results. An initial out real of extreme spots followed by very dry skin for the duration of treatment are common though.