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Original poster

Roaccutane - experiences

23 replies

TankFlyBossWalk · 14/11/2010 17:39

Hi all,

I've suffered with acne ever since I was in my mid-twenties (I'm 33 now). Fingers crossed I will be prescribed roaccutane at a hospital appointment next month, as I've tried everything and nothing's worked.

However, I've read that the side effects can be severe. I have a raised alkaline phosphatase liver problem (you can tell I'm not medical from my phrasing!) and I'm wondering if this could be an issue.

Has anyone had any prositive or negative experiences of using this drug, please?

Thank you! :)

OP posts:

AttilaTheMeerkat · 14/11/2010 18:32

Tank,

Have you only seen a dermatologist to date?.

Has anyone ever tried to establish the underlying CAUSE of the acne rather than only prescribing creams and pills?. I ask this as many women with adult onset acne often have a condition called polycystic ovaries. Has that ever been tested for?.

Roaccutane should not be given to people who have decreased liver function.

YourCallIsImportant · 14/11/2010 18:36

A colleague was on it for a few months. She turned into a bit of a monster TBH, she had really bad mood swings and was very short tempered.

She also had really dry skin while she was on it, and was always using lip salve and hand cream etc.

On the positive side, it really did clear up her acne, and improved her confidence no end.

Original poster

TankFlyBossWalk · 14/11/2010 19:34

Attila, I've seen the GP and dermatologist. I'm always curious to know what the cause is, but it seems like they work this out by trying me on lots of different medications. I've asked about polycystic ovaries, but it was ruled out somehow. I'll check that the dermatologist knows about my liver. Of course it's in my notes, but I'll just highlight to him.

YourCall, I'm very worried about the mood swings. It's sounds awful. I'm mardy enough as it is! Mind you, that's often caused by looking in the mirror and seeing horrible red spots everywhere. Sometimes I just cry and it means that I don't like to go out very much, especially for dressy evenings.

OP posts:

YourCallIsImportant · 14/11/2010 21:48

You just need to prep people for how bad you might feel, and that mood swings are part of the side effects.

It might be worth it if you get the result you're looking for.

IIRC, they do a pg test before you can start taking it, and then again during the course of treatment.

DoubleCrown · 14/11/2010 22:05

I took it for about six months and as I remember it (a good few years ago now) the side effects for me were very dry skin to the extent that my lips bled, dry eyes (eye drops required) and sore joints when I exercised. I didn't suffer the mood swings, though I do know others who did.

ChilledChick2 · 15/11/2010 13:50

Roaccutane (also known as Isotrex) is available in gel and pill form. It isn't to be taken/used if suffering from any cancer, liver disease, high triglycerides, high cholesterol, hypervitaminosis A or if you're on tetracyclines. It's definitely NOT to be taken/used if pg (will cause severe damage to the foetus) OR breastfeeding.

You may be able to avoid the mood swings if you use the gel as it is only applied on the affected areas and not ingested, although you need to ask the Dr about that.
FWIW, I was on Isotrex for a while. Still got acne and I'm 32.

Hope you get the treatment needed to clear the acne up. Good luck

CamisMom · 15/11/2010 14:00

Hi Tank, I was on Roaccutane for a year about 3 years ago as i was diagnosed with adult onset cystic (?) acne & my dermatologist felt this was the only way to clear my skin for good - did have a lot of blood tests & an ultrasound before hand, to rule out polycystic ovaries & to check liver function. Worked brilliantly, my skin was amazing & all these years later the acne has never reoccured, in fact I rarely get a spot. However it can cause some fairly major personality changes - I became very quiet and also very very thin (also common)but not moody at all. I wasn't allowed to drink & also had to sign forms constantly to confirm that I would take all possible steps to avoid pregnancy. Also waited a full year after finishing to get pregnant (need to wait at least 3 months)& my DD is perfect. It does the job it is meant to & does it very well so if you are willing to take the side effects I would definitely recommend it
HTH

destructogirl · 15/11/2010 14:18

I got hideous depression ultimately resulting in losing my job.

I'd do it again though. I now have a better job, and I can also look at myself in the mirror without crying.
It was hell being on them, but ultimately worth it.

Your liver may be an issue, they tested my liver function before allowing me on it.

crystalglasses · 15/11/2010 17:11

DD! was on it a few years ago but only for a few months, when in her teens. Sorted out her acne no probs although she suffered from side effects. Worth it IMO as she had lovely skin before acne and now her skin is still beutiful.
I would do it - as long as you're prepared for side efffects. You can always come off it if you can't cope with them.

AppleHEAD · 15/11/2010 20:55

Has it as a teenager and although it cleared up my skin I did get panic attacks and anxiety! Not nice at all and I am not sure when I look back if it was worth it

TheLemur · 16/11/2010 11:59

I have been on it twice and had no major problems while taking it (just the usual dryness, no mood swings or anything) but it didn't clear up my spots long term - I still have them now. I am also prone to anxiety/panic attacks now that I didn't have before.

Smash09 · 17/11/2010 13:26

I had a course when I was 16, didn't have any mental side effects but just had flaky red skin and nosebleeds. Vats of moisturiser were needed.. but I would do it again if I had to. I have great skin still years later and I used to feel so ugly and horrible about my skin.

They do need to confirm that your liver won't be affected though. It's not allowed with certain conditions x

raindroprhyme · 17/11/2010 21:21

i have had 3 lots over a 10 year period and my acne always came back. it is hideous stuff terrible side affects dry eyes mouth sore joints can't drink mood swings. it cleared my skin but eventually always got bad again.
at the moment i am following the regime on acne.org it is working well.

Shelly32 · 17/11/2010 21:47

I was prescibed it when i was 21 and it did the job but it caused anxiety. I'd never experienced an anxiety attck before and they're not very nice. My skin has broken out again since pregnancy and i'm on Oxytetracycline and Panoxyl which are doing the job. Whatever you choose to do, i hope it works as having bad skin is really esteem crushing!

whenwillisleepagain · 18/11/2010 18:02

Hello, I developed acne in my early twenties and had roaccutane IRRC at 29 or 30. I had very dry skin but no other side effects that I can remember. I was so much happier because of the improvement in my skin that I feel positive about it. I'm now 43 btw and my skin has been fine ever since.

wetboy1980 · 07/08/2015 21:26

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

LittleMiss77 · 08/08/2015 21:31

OP - this drug does have a lot of side effects however the results are good.
The best thing to do is look at whether the side effects are worth putting up with... i had to put vaseline up my nose a number of times a day to try and combat the dryness, my skin flaked and cracked (this stopped when my dose was reduced) as did my lips (i still have to carry a lip balm with me at all times, some 18 years later) and i couldnt go out in bright sunlight as id burn very very quickly.

Im not sure if i was one of the luckier ones as i didnt suffer with depression (quite a well known side effect i believe) or thinning hair...

Given how dreadful i felt about my appearance (acne on face, chest and back), the side effects i experienced were a small price to pay.

AllPizzasGreatAndSmall · 08/08/2015 21:48

wetboy As this thread is almost five years old I'm not sure why you felt the need to resurrect it to advise the OP.

Are you Mike Walden?

BoreOfWhabylon · 08/08/2015 21:51

Reported Wetboy for spamming

VulcanWoman · 08/08/2015 22:05

The book is free but the program they're flogging is $$$$. I don't know how you sleep at night.

UhtredOfBebbanburg · 08/08/2015 22:07

DD1 (a teen) was on roaccutane for almost a year (it took that long because she couldn't tolerate the usual dose of 3 pills a day at all, she could only tolerate 2 pills for a few weeks together at a time then had to drop down to 1 for a couple of weeks before going back to 2). She had very severe side effects on the dry/bleeding skin (especially her lips which basically looked like they were rotting) mood swings, total lack of appetite side of things, and towards the end she had serious issues with her intestines which involved hospitalization. However - her skin is now perfect, like a babies, so soft and lovely, she doesn't need or use makeup at all. Her lips are fine, so are her innards (her cycle hasn't gone back to normal though, still very irregular). She never had any issues with her hair which is actually now the best it has ever been (and it's always been amazing, very thick very curly) - this may partly be because she had it cut very short near the start of the course of roaccutane because she was in such a foul mood and dealing with long tangly hair was a hassle she didn't want to deal with. But it had grown longer than it was before she had it cropped before the treatment was over and as I said was in better nick than ever - so I don't think thinning hair is an automatic side effect.

She still maintains that she is glad she had the treatment but she wouldn't recommend it to anyone because it felt so dreadful while she was on it. She thinks the results were worth it for her but might not be for someone else who is 'less bloody minded' (her words). She also reckons that if we (her family) had been less tolerant and more 'normal' it would have been harder too. Make of that what you will. I don't actually feel we were particularly tolerant but we let her mood swings wash over us and didn't hoard grudges or hurt feelings. Because we knew it wasn't her, it was the drugs. That gave her the freedom to out what effort she could muster into being civil to her friends and teachers at school - if she had had to make an effort at home too things might have gone tits up at school. Since she didn't have to, they didn't.

UhtredOfBebbanburg · 08/08/2015 22:09

Ah sorry, didn't realize this was a zombie thread resuscitated for spamming. Sorry. :(

ChilliAndMint · 08/08/2015 22:17

I had it for a rare form of severe acne ( female only apparently) when I was 21 so I'm thinking it was new on the market.

It worked miracles! My skin did become very dry but the huge pustules vanished within a fortnight. No other side effects.

I found I became very sensitive to most face creams, so I used stuff like nivea, a bit heavy but it didn't irritate my skin. Face pack were out as was make up remover and certain foundations.

If it were not for that drug I would have huge scars, I still have some pitting but hardly visible.

It is really the only cure for acne IMO.

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