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.

I took it for 6 months when I was in my mid-40s and it was completely life-changing. This followed 20+ years of being on antibiotics all the time and having the most awful painful cystic acne that regularly got so infected I needed pencillin. It was so obvious to me that no amount of dietary changes, topical remedies, general antibiotics were ever going to have an effect on what was actually a serious skin condition.

I would do it again in a heartbeat. The side-effects were very manageable, you get well looked after and monitored very carefully and ten years on, I still have perfectly clear skin all the time.

It is the most amazing drug and it does seem to me that the media loves to portray it in a headline-grabbing way as a dangerous thing and to be avoided at all costs when the bad side-effects are actually very rare.

Both DSs took it. Eldest had 2 sessions as his came back. Suffered dry skin and eyes mainly. Youngest had one lot, dry skin, nosebleeds and hyper sensitive to sunlight/prickly heat.

Nothing else worked.

I did a low dose short course and it worked fine. Pretty rare to get a cyst now. Pain in the arse though. Monthly trips to hospital for blood and pregnancy tests. And you have to get it at the hospital pharmacy only.

It’s the suicide risk with this that I think is the most worrying thing. There was a thread on this previously( when I was considering it for myself) and the lady’s teen daughter had started on it and commited suicide out of nowhere. I’d want to explore every option first especially with teenagers. Have you tried dim supplements? They were a miracle for my skin

DC was prescribed Roaccutane at 16. As noted by others, the dryness can be managed and the results were positive. There was a focus on the possible side effects, including depression, and I was glad DC was on the course while still living at home so we had 'eyes on'. DC reported no depressive feelings and found Carmex lip balm and Cetaphil moisturiser worked best for them, after trying various.

Two of mine had it and worked well and luckily minimal side effects that moisturiser/lip balm fixed. One was hesitant as they were in high level sports competition and didn’t want performance affected. They dipped a little from peak but not enough to affect them overall really so they were pleased. Also had one with MH issues where worsening depression etc was a concern but nothing occurred, in fact the improvement in their skin seemed to give them a boost.

We’ve got a lot of experience of it in my family - dh and I both took it as teens, as did my brother, and both my kids took it around the 14/15 age.

For me it was amazing, I had full face acne and was very low in confidence. I took two courses back to back and had completely clear skin for 3 years. The dry skin and lips was hard but worth it. The spots started coming back around 18-19 and I had another course. Since then I just got hormonal acne.

Both dh and my brother think it affected their mental health but it’s hard to be sure - dh had other things going on which would cause depression.

Dd had a similar experience to me, although her skin was never quite as clear afterwards. She gets quite a few spots now, although mainly they’re around her period and they’re manageable.

Ds had clear skin for two months and then the acne returned exactly as before - well, possibly not quite as bad (spots less painful). He suffered a lot of migraines whilst taking it and also backache/body aches. He lifts weights so that might have been why. It feels like he went through a lot of pain and inconvenience for nothing. So our experiences are very mixed!

My kid was one whose mental health was very badly affected. He was very mentally unwell and I could not figure out why he had gone so far downhill so fast. Nobody warned us about the mental health side effects and the dermatologist who was given his full health history should never had prescribed it for him. I only figured out what was going on when someone posted here about it.

He came off, his mental health improved and his cystic acne has gone, never to return.

Oh god Lovelace I can't imagine how scary that must have been and I can't believe that you weren't informed of the risks!

This is the thing. I think the psychological side effects can happen quite fast so people don’t see it coming.

It’s important to rely on medical research and advice rather than anecdotal horror stories.

Both my DH and DS took it and it was a massive improvement. DH was already in his mid-twenties when he took it and had cystic acne, so he still has a lot scars and pits in his skin but no more active disease. With DS we were able to completely avoid the permanent damage to his skin by giving it to him at 16. There were definitely side effects, mostly very dry lips but they were manageable. The permanent result has been astounding.

Have you found out what is causing the acne?

Thanks to those sharing experiences.

My DS has been referred to dermatology for this - but unfortunately the local waiting lists for NHS are 18m-2 years.

We are thinking of going privately but I'm not sure how that would work in terms of prescriptions & blood tests.

I took Roaccutane in my late 20s. I'd never had brilliant skin, but I also had spots in my neck and across my back, and in my general chest/cleavage area. The spots on my face were cystic on my chin and down the sides of my nose and I'd also get quite large pussy spots as well that would burst and scar. And honestly my skin was sore, it was just always really sore.

Anyway, I had one course and it cleared everything up. It was amazing. I do remember the dryness was pretty tough, and my legs ached and towards the end of the course I did get very tired (walks that were normally easy for me, I'd have to get the bus). I think I felt a bit low, but not majorly depressive, I think it was just that physically it was very hard.

I'm about 15 years on now. My back neck and chest area have remained clear. My face now does have some spots again, but not the cystic spots and if I'm scrupulous about washing my face I can usually keep on top of it. Mostly I am still really grateful it's not as and as it was. It used to really affect my confidence

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.

My son had horrendous acne and it started early, he'd have been about 13 and over 6ft. He was so self conscious as no one in his friend group had it at all although some got it later. We tried all the other stuff and it did nothing. I was worried about roaccutane and spoke to a psychiatrist I knew through work, she recommended we try it as he was so upset about the acne and it was so effective.

It was like magic, the improvements started really quickly. At the end of the course he was really happy but a couple of years later it started to come back, he went straight back on roaccutane and no more problems.

I don't think it is pleasant, his nose was so dry and he got nose bleeds but he didn't regret doing it.

Can I suggest you look into blue light therapy for you son? It has had positive results for acne. It’s not pushed as a treatment because there is no money in it for Big Pharma but it is very much used with good results by some of the very few dermatologists who have broken ranks with the medical profession over the use of this dangerous drug.

Sorry to give a negative story but it caused me to fall into a severe depression at the age of 19 - I’m now 37 with no other history of depression

I suffered with severe acne from the age of 12 - prescribe antibiotics and ointments etc but didn’t work

My consultant dermatologist prescribed me with Roaccutane at the age of 19- he told me and my mum about the side effects including potential depression. I was so upset and fed up about my skin that I wanted to go ahead - after all I thought my life would be fine if I had clear skin.

prior to this and following this I’ve never had any history of depression - I’m now 37

but anyway my side effects came on from the second day. yes the very dry lips and eyes (I got lots of styles) but they were manageable and I felt worth it.

but the depression was like I was in a dark cloud - everything was good in my life- it was the summer holidays after my first year of uni. But I was crying in secret the whole time, felt helpless and hopeless- like nothing was worth anything anymore. I got progressively worse over a few weeks

my mum noticed it and we decided to come off it

the depression instantly lifted. It really felt like my brain had a chemical imbalance that made me depressed

I did suffer with bad skin until my 30s - to be honest I still do, although it’s not as severe anymore. But I would never personally take another course of that again

this is my story and I appreciate others have had it with only minimal side effects

I honestly have to say that taking the drug made me realise depression can’t be cured by simply smiling and trying to cheer up - it really felt like something in my brain switched and my emotions became really really dark. I had everything to live for but it really made me feel like I didn’t and I couldn’t shake it off. it was a very sudden change and I went back to normal almost as soon as I stopped taking the pill

if you have ever had baby blues after birth - it was quite like that but way more intense and dark.

maybe I was one of the unlucky ones on it

But in a thread that's been full of people saying (no doubt truthfully) that they have no experience of a well-known and well-evidenced uncommon but serious side-effect, and in effect downplaying the risks, I think it's reasonable for someone to give their experience of that side effect being a genuine risk.

I've had family experience of a teenaged relative who became seriously depressed on roaccutane. He's fine now, but he and his mother went through hell.

Ds had really awful cystic acne on his face, chest and back. If I googled 'severe acne' honestly, the pictures that came up were not as bad as his, it was truly awful. We were warned about the side effects of Roaccutane but they paled into insignificance by then.
It worked miracles. The only side effect he had was very dry lips and tongue. He was told he could have two cycles of it but he only needed one.
His skin is perfectly clear nearly two years later

I've just remembered another sympton ds had - constant nosebleeds. It was actually quite debilitating, he lost sleep due to several bleeds each night and had to miss chunks of lessons to sort out his nosebleeds.

Yes same with me - on top of the other symptoms I had as above

DD and I have both taken Roaccutane at separate times. Her in her early 20s, me in my late 30s.
We both think it's the best thing we ever did.