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can i please have some adult experiences with roaccutane please??

(53 Posts)
purplerainbow Tue 15-Jan-13 20:31:51

I had acne on my back as a teen had various meds etc and didnt really help. Anyway, It cleared up in my early teens. After i had ds1 (6.7) it flared back up . I was put on every kind of anti biotic going from gp and nothing helped at all. Was sent to 2 different dermatologists. The first one tried a different anti biotic, again did nothing. The second one said the only thing that would get rid of it was roaccutane. At that point i had only heard bad things about it. I spoke to my gp about it but she strongly recommended i didnt try it because of my mental health history. She thought it wasnt worth the risk for me.

I then got pregnant with ds2 (4.2) and it cleared up. After i had ds2 it came back with full force particularly bad on my face. Always worse on my jaw and chin. Again was tried on various meds and still nothing changed. I had quite a few life adjustments and it calmed down a little. Im at a point now though where iv really had enough. If spent money seeing various alternative therapys and nothing has helped. Drink plenty of water. Eat ok, take vitamins. Nothing i do helps. Im currently on sertraline for anxiety. Im wondering if im already on an 'anti depressant' would i still be at risk of the mental health side of things?

Does anyone have any experience as an adult on this?

higherhill Tue 15-Jan-13 20:59:03

I took Roaccutane for about six months when I was younger. I had the acne just on my face but like you just reached that point of having tried everything else and this was my last hope. I only started to get the acne in my twenties and put up with it for years until I was about to get married and was desperate for a solution. Paid to see a private dermatologist who prescribed it. I took the tablets and started to see real difference within days. My skin dried out and was smoother.All the bumps and pitted scarred bits on my face just completely smoothed out. It was amazing. Towards the end of the six month period, my lips were very dry and needed lots of lip salve, skin needed thick moisturiser and I had occasional nosebleeds and dry eyes, but after tablets were finished I didn't have these side effects. Didn't have depression or anxiety. Years later I get the odd spot but nothing like old acne. No regrets.

purplerainbow Tue 15-Jan-13 21:02:42

iv heard you get very dry skin.... iv just started another thread on here as i also get eczema sometimes. Do you think it would make that worse?

morethanpotatoprints Tue 15-Jan-13 21:06:04

Both my husband and half brother in law have taken this drug. They both became suicidal and very depressed. Both are fine now but it took a while for my dh and longer for bil. I know this may sound silly but my dh had the kids and me to help support him whereas my bil aged 33 only had his parents. I do know they come with warnings about the depression. Maybe it works for some people and everybody is different, but I know these 2 won't take them again.
There is a good chance that laser treatment will work with some people and in extreme cases of side effects with Roaccutane, offer less side effects.

purplerainbow Tue 15-Jan-13 21:28:10

Do you mind me asking if they had any history of depression? The trouble is my skin is actually getting me down. It really affects my confidence.

BookFairy Tue 15-Jan-13 21:38:23

I'm 27 and currently taking a low dose of Roaccutane (10mg per day, as opposed to the 40mg that would be usual for my weight). My face looks cracking already after a few months! I also have dermatitis (eczema) and although Roaccutane dries out the skin I'm not having too much trouble. I use Cetaphil cleansing lotion and moisturiser (recommended by my excellent nhs Dermatologist).

I think the main point is that I am seeing a very experienced Dermatologist and am taking a much lower dose than was originally suggested by another nhs Dermatologist. I have a history of mild anxiety but have not noticed an increase in this as my acne contributed much to any "low moods" I had in the past.

morethanpotatoprints Tue 15-Jan-13 21:38:25

Hello Purple.

Yes dh has a long history of depression and the specialist said doctor shouldn't have prescribed tablets to him.
My half bil had no previous but has since had a nervous breakdown, totally unrelated to the condition or the tablets. But maybe the side effects of depression are worse for those who have a tendency or would do given certain circumstances like my bil.

FWIW I would stay well away, but I know its ok for me to say this as its not me that feels like you.
My dh still has the condition and an unrelated much more serious condition which makes him very poorly.
will pm you, love.

LadyIsabellaWrotham Tue 15-Jan-13 21:48:12

My aunt took it as a teen and suffered disastrous, terrifying depression. If you do decide to try it, do you live with a reliable adult who can step in and flush them down the toilet and whisk you to the GP if they see you taking a mental downturn?

purplerainbow Tue 15-Jan-13 21:53:03

No its just me and my ds's at home. I really want nice skin. I obviously don't want to risk putting my sons in any 'danger' of any depression from myself but I know it sounds vain but my skin has a massive impact on my day to day life. Avvoiding eye contact, sometimes I avoid talking to friends if its particularly bad. I know it isn't as bad as it could be...it doesn't cover my whole face...its just getting me down and iv had enough!

BookFairy Tue 15-Jan-13 22:08:36

Have you been referred to a Dermatologist? They can offer more than Roaccutane.

purplerainbow Tue 15-Jan-13 22:52:17

Yes I have seen 2 different ones

BookFairy Wed 16-Jan-13 18:39:47

Did they suggest a dose of Roaccutane/how much they monitor patients? I only ask as I saw the only Dermatologist at my local hospital who didn't seem v knowledgable and was uninterested in me. I got my GP to refer me to a big hospital in my nearest city where the Dermatology dept is a lot bigger (8 Consultants). This dept is a lot more experienced and up to date. I only take 10mg of Roaccutane per day and am seen in clinic every 8 weeks.

longingforsomesleep Thu 17-Jan-13 08:40:47

purple - I took roaccutane about 20 years ago and I don't think it had been so firmly linked to depression then. I suffered from bad acne from the age of 16. I kept it under control for a few years with various antibiotics but by the time I was in my early 20s it was really bad (like you, worst along my jawline but pretty much all over my face, neck, chest and back). I moved around a lot in my 20s and every time I saw a gp they insisted on trying various things before they would refer me to a dermatologist.

Finally, around the age of 30 I was referred to a wonderful dermatologist who put me on roaccutane. For about a week my skin got worse and then it cleared up completely. Only side effects were very dry skin and cracked lips. But what a joy to be slapping on moisturiser when I'd spent my life using various lotions to try and dry it up! It did come back a little bit eventually and I had another course. I'm afraid I don't know what strength the tablets were. I then started having children and I don't know if it was a result of that, or if the second course of roaccutane had finally dealt with the problem, but I've not suffered since (am now 53) apart from one or two spots now and again.

As to depression - I'm afraid I don't know what I would do in your shoes. Speaking for myself, I know that in my 20s I felt suicidal BECAUSE of my skin. For years the first thing I did when I woke up was feel my face to see what painful lumps had appeared overnight. I had days when I called into work sick because I couldn't face the world. I would allow myself a whole hour on a morning to try and cover up my horrible face. I know that if I hadn't found a solution I would be living on my own as I couldn't bear to let anyone near me or risk them catching a glimpse of me without make up. Because of that, I know I wouldn't have been happily married for the last 19 years and have 3 gorgeous teenagers.

Only you can balance up any depression caused by your skin as it is now against the possible risk of much worse depression with roaccutane. Nobody else's experiences will dictate how you will respond. Although I must say, Lady Isabella's aunt aside, it does seem to me that roaccutane causes depression in men more than women (though that is just an impression and isn't based on any real knowledge).

I wish you luck with whatever you decide to do. Acne is a terrible affliction and its impact is hugely underestimated by non-sufferers.

CuriousMama Thu 17-Jan-13 08:47:26

Was over 20 years ago when I took it. Interestingly I suffer from anxiety which I have to take meds for. I didn't prior to the roaccutane but tbh my anxiety came on years after the meds. But a friend of mine used it too and she ended up suicidal but also after taking the meds.

I think you have to weigh up the pros and cons? I'd try to get them to start you on a low dose perhaps?

Also have they tested you for PCOS? I have a feeling this could be linked to your skin problems especially as it flares up after pregnancy.

Have you tried a naturopath? Or the oil cleansing method?

Good luck, I hope you find a solution as it's awful suffering so much.

CuriousMama Thu 17-Jan-13 08:57:19
iseenodust Thu 17-Jan-13 09:10:29

DH had roaccutane in his early 30's. It worked for him, he had two courses and he didn't have side effects. However, he wasn't well monitored by the NHS. Didn't even check his bloods before prescribing the second course. Ten years on the acne does come back sometimes when he is stressed but mainly on his back now.

longingforsomesleep Thu 17-Jan-13 10:50:08

iseenodust - that's very bad not to have his bloods checked. I had regular appointments with my dermatologist and regular blood tests all the time I was on roaccutane.

notcitrus Thu 17-Jan-13 11:17:02

MrNC had had depression and the acne wasn't helping, so took R aged 30 and it worked wonders with no side effects other than dry skin in places.

KatoPotato Thu 17-Jan-13 11:23:13

Reading with interest. My dermatologist wants me to try roaccutane for my blackhead acne on my neck, shoulders and chest.

I've had my bloods taken and photographs taken (pleasant) with an appointment scheduled for Monday...

I'd never heard of it before, and was only under a consultant for a cyst on my face when he spotted my blackhead bonanza. Been given swathes of patient information but I'm really not sure!

catladycourtney1 Thu 17-Jan-13 11:48:03

I took roaccutane for about six months when I was 16 (I'm only 20 now so not a million years ago). I did have a history of depression, as did my mother and her mother, but although I'd been referred to psychiatrists and tried a few antidepressants, I'd never been formally diagnosed, apparently. I have to say that, for me, the roaccutane did not make my depression any worse. The only thing is, don't underestimate how dry your skin will be - not just your face but your whole body, eyes, lips, etc. Invest in some good-quality moisturisers or you might find yourself very uncomfortable. My lips used to crack and bleed no matter what I used on them. The worst thing about the treatment for me was the monthly blood tests, but obviously not everyone is as wimpy as me smile

LadyIsabellaWrotham Thu 17-Jan-13 14:09:50

In the interests of accuracy, I changed the identity of my teenaged relative who had terrible depression on Roaccutane - it wasn't my aunt, it was a male relation. I often change little identifying details like that when I'm posting because I'm paranoid about privacy, whilst trying to keep all relevant features the same, but I didn't realise that these side effects were sex-linked, so his sex was relevant.

Having seen the state that his mother was in at that time; unable to leave the house because she worried he'd be dead when she returned, I personally couldn't take it, for the reasons you expressed earlier, to safeguard your DCs. However I've not been in your position, it's possible that your gender is on your side, and there are additional safeguards you and your doctors could take. Is it possible that your anxiety is skewing your self-image? Is it possible that therapy could enable you to live with your appearance? (genuine questions, I'm honestly not having a go - I had bad but not appalling acne as a teen, and took antibiotics for years).

purplerainbow Thu 17-Jan-13 16:49:54

I have tried so many alternative therapys and no luck there. My face definetly affects my self confidence. It gets me down but I know it looks worse to me than others but that doesn't make me feel any better.

Why do you need regular bloods done?

iseenodust Thu 17-Jan-13 17:59:58

Roaccutane can cause liver problems (Not a medic!).

Samvet Thu 17-Jan-13 18:04:49

I took this as a teen with a history of depression and anorexia. No mental health side effects apart from feeling much bloody happier that my skin cleared up! Balance risk vs benefit and how much your skin gets you down.

msrisotto Thu 17-Jan-13 18:56:39

I'm watching with interest here. I am currently on Dianette which has kept my skin clear for 10 years but it's days are marked due to increased risks.

Has the pill ever affected your skin purplerainbow?

fufulina Thu 17-Jan-13 18:59:07

My dh took roaccutane in his teens. His skin on his face is now extremely sensitive. He burns supremely easily, and it also discoloured his teeth. But, as he would tell you, it was a total life saver at the time.

purplerainbow Thu 17-Jan-13 20:14:29

The pill did affect my skin I think yes. It turned out I couldn't have the combined pill as gave me migraines, so I have cerazette. Didn't notice a difference when I came off it a year just to see.

I was tested for pcos, well I had bloods done and they said my hormone levels were all fine?

SayMama Fri 18-Jan-13 23:54:02

I took R when I was 21. As above, you have to watch out for the dry skin! I never went anywhere without my little tin of vaseline for my lips!

It didn't affect my mood, no. Infact I would say it was one of the happiest years of my life. I got married, bought a house and qualified as a nurse all in that year, so wonderfully stressful! But having clear skin (within weeks!) was pretty amazing.

I'm not sure what I would do in your shoes, only you know. Interestingly I do have depression now (several years on) but I strongly feel mine is down to genetics, my father and paternal grandmother suffering from it as well.

I took it 5 years ago when I was 26. After having acne since I was 12 it was amazing, my skin was clear within weeks. I had no side effects and actually felt less depressed.

carbondated Sat 19-Jan-13 19:44:13

DD took it in her late teens and started with ulcerative colitis a year after. No-one even suggested the latter might have anything to do with taking roaccutane till she moved to a different part of the country and saw a new consultant for her colitis who said there is a link between roaccutaine and the development of colitis.

She was a very healthy child/teen with no gastro-intestinal problems and who only had 2 bouts of vomity viruses throughout childhood and there is no history in either family of colitis etc. She now takes immuno-surpressant drugs and will have this condition for life (unless she has her colon removed ).

If you google ulcerative colitis and roaccutaine there is quite a bit of info about lawsuits against Roche. DDs acne improved hugely while she was taking roaccutaine but now in her late 20's her skin isn't great and she has a horrible life-long condition that may have been caused by this drug.

I know how distressing skin problems are but would only have roaccutaine as a very last resort.

purplerainbow Sun 20-Jan-13 06:40:36

Thanks for your responses. Iv got an appointment with gp this week to discuss it. I think unless she tells me not to I should try it....does anyone know if there are any problems with stopping it? As in, you don't need to finish the course for example?

I think you'll need to be referred to a dermatologist as GPs cannot prescribe it (at least they couldn't when I took it). I only took it for 3 months as once the acne was clear I wanted to deal with the scarring.

cardamomginger Sun 20-Jan-13 10:57:07

I took Roaccutane as an adult for about 6 months. I was absolutely fine on it and it worked like a charm. Yes, it can cause liver problems, but you will have monthly blood tests to check your liver function, so they can spot any sign of trouble. Most people don't have any problems.

I got very dry skin whilst I was on it, but this cleared up and went back to normal within a couple of weeks of ending treatment. I just used masses of moisturiser (E45 lotion and cream worked really well for me) and LOTS of lip balm. Some people recommend drinking through a straw, so your lips don't get wet from fluids. this can help to stop chapping and dryness. Some people also get dry nails whilst they are on it, so keeping them short, so they don;t split is a good idea. I got the dry lips, but my nails were fine.

If I were you, I'd do it. It sounds like you have really suffered with this for so long and tried everything else possible. I am so pleased I did it.

cardamomginger Sun 20-Jan-13 10:59:32

Just read your latest post. I stopped and my acne started to come back, so my dermatologist put me on it again for a couple of months. After that, all gone.

I agree with AKiss that your dermatologist should be the one to say yes or no.

purplerainbow Sun 20-Jan-13 14:45:11

I guess my gp advised against it because of my history of depression and I was low at the time but now post dc and not with exh life is better and I'm in a different place although still struggle with the anxiety.

I'll ask for a referral and then discuss with the derm.

tacal Sun 20-Jan-13 15:03:26

I have taken roaccutane twice, once early twentys and again early thirties. Both times it made a big difference. No side effects except very dry skin. My doctor says i have a low white blood cell count and I do wonder if it is anything to do with taking the roaccutane. I have had a few problems with big spots on my face recently but have discovered it is caused by my hair touching my face. I had very long hair both times I took roaccutane and wonder if all I had to do was keep my hair away from my body, instead of all the antibiotics, dianette, roaccutane. Even though I had no side effects, I wish I had not taken roaccutane. But I was at the point I was very depressed bacause of my skin. It is a difficult decision.

catladycourtney1 Sun 20-Jan-13 17:04:28

I would like to add that although my skin cleared up at the time, my back-ne has returned with a vengeance. My face is still much better (except at certain times of the month or when I'm on the pill) but my back is pretty bad.

purplerainbow Sun 20-Jan-13 20:06:24

Tacal. Why do you wish you hadn't taken it?

I'm wondering if its only effective for some people only when they're actually taking it?

purplerainbow Tue 22-Jan-13 20:16:07

So I spoke to my gp about a referal to another dermatologist....she said he may not want to give me roaccutane because of depression history and the fact that I am on meds for the anxiety.... I'm hoping she's wrong.

msrisotto Wed 23-Jan-13 10:43:50

Well, they may have other ideas as well? I would hate to think Roaccutane is the only thing in their toolkit.

ShhBoom Wed 23-Jan-13 17:41:08

I was on Roaccutane when i was about 16, and it worked miracles. However it was a horrendous few months. My face went bright red, and lip peeled really badly. My moods were all over the place, and i was a nightmare to live with.
But it had incredible results and i didn't regret taking it at all.

Now my acne is back again after having DS and i'm still not sure if i want to go back on it. I want the clear skin, without the few months of misery! I'm also on sertraline so it'll be interesting to hear whether or not the dermatologist says you can have it. I know how miserable acne can make you feel, so i hope they give you the answer you want!

tacal Wed 23-Jan-13 18:17:38

Hi purplerainbow, you asked why I wish I had not taken roaccutane. It is because I think I rushed into it without doing any research. You are taking time to think about it and finding out about all the pros and cons. I rushed into it without thinking about it. All I cared about was having nice skin. And to be honest I still hate my skin even though I have less spots.

purplerainbow Wed 23-Jan-13 21:32:49

Thanks for replies. Iv just realised in my first post I seem to focus on bad skin on my back...it was bad on my back as a teen but now its bad on my face, mainly my chin/jaw area. It definitely improves slightly for a few days and then bad again. I am on cerazette so I don't have periods. I have, however spend 18 months off the pill to see if it made a difference and it didn't at all so I can't even blame the pill!

VikingLady Thu 24-Jan-13 16:22:51

I took it in my late teens, had a history of depression and a very strong family history of depression/mental illness. I felt it actually saved my sanity - my own (mild) depression was partly due to my self confidence, and my skin cleared up completely, and is still clear 15 years later.

However. Another teenager my age (but male - apparently it affects men more) committed suicide whilst taking it. He saw the same consultant. I also got other side effects: for most drugs you get given a leaflet of side effects - Roaccutane? It's a book! I got the hair loss (still thin), dry skin/thrush/nosebleeds but they all cleared up within a couple of months of stopping.

If you do take it, make very very sure you do not get pg for at least a year after stopping it - it stays in your system for months.

That said, I still say it saved me.

longingforsomesleep Thu 24-Jan-13 19:13:42

VikingLady - that's exactly how I felt, that roaccutane saved me. I don't remember any side effects other than very, very dry skin. But it was just such a novelty to me to be able to slap on a thick layer of moisturiser I didn't mind at all.

I think, for some people, acne affects their lives so much they will take anything to make it stop. I know I would have swallowed any toxic, life-shortening, side-effect ridden drug to make my acne go away. I think, perhaps, if people are hesitating and weighing up the pros and cons of putting up with acne versus potential side effects of roaccutane then perhaps their acne isn't having such a terrible impact on their lives. When I took it I wasn't aware of any bad publicity about the drug but even if I had been it wouldn't have stopped me from taking it I was so desperate.

purplerainbow Thu 24-Jan-13 22:56:13

I hear what your saying but I'm on my own with 2young ds's. I have to think of them. Just in case...all iv had is my gp saying she wouldn't advise it because of my history and I see her regularly due to ds2 poor health and she knows us 3 quite well so it worries me. My skin really really does affect my day to day life. Something she did say to me is now because of nhs 'money' she can't refer me to a dermatologist, she has to send me to a gp with a 'special interest' in dermatology first. She says he may have something I haven't tried. Although I doubt it. She also said she doubted very much he'd suggest roaccutane as I'm on sertraline. Not sounding hopeful.

msrisotto Fri 25-Jan-13 10:44:19

Well with respect to the woman, she isn't a dermatologist, or even a GP with a special interest....In your position, i'd wait until I got to the top before giving up hope x

purplerainbow Fri 25-Jan-13 12:36:34

Ok, thanks for being understanding smile

longingforsomesleep Fri 25-Jan-13 14:59:09

Purple - i hear what you're saying about your children and of course you have to be responsible in avoiding anything that could impact on them. When I was at my worst I was unattached (because of my skin!) and childless.

Could you go back to your GP and push for a referral to a dermatologist? Do you think he/she realises the impact it is having on your life? Do you think your bad skin is one of the reasons for your depression? In which case that would be a good argument for a referral.

Or could you try another GP in the practice, if there is one? (the 4 GPs in my practice vary wildly in their approach to things). Is your GP on line? Ours is and there is a system whereby you can have an on-line dialogue with a GP. I know when I was really suffering with acne I never managed to get across to the GP how bad it was because I was trying too hard not to break down. You might feel more able to get the message across on line?

It really annoys me that I was fobbed off by GPs from the age of 16 until my late 20s. I wish I had been firm and insisted on being referred to a specialist.

Failing that, would you be able to pay for a private consultation yourself? I'm not sure how you would go about this, but I remember a while back someone saying to me that you could do this for a flat fee (£100?).

msrisotto Fri 25-Jan-13 15:59:09

purple - God I understand what you're going through. I'm not in the same situation but I also have dilemmas about medication that i'm currently taking for my skin. I am doing the option that is bad for me because the risk is better than having the acne and doctors have never bothered to put me forward for Roaccutane. I feel guilty for my husband and parents and sister in case one of the risks actually happens, scared for me in case it happens but too scared to come off. I put it out of my mind which is the wimps way out.

I really relate to what longing says about being fobbed off by GPs. They truly don't empathise or understand and I don't listen to them. I reckon I know more about it than they do just by doing my research online. If/when I decide to grow some ovaries and go back there, I will not be leaving without a referral to a dermatolologist.

purplerainbow Sat 26-Jan-13 17:12:24

She didn't say I can't see a dermatologist she said due to 'changes' on the nhs now, I have to see a doctor with an 'interest' in dermatology in a different practise before I can see a dermatologist. My skin does contribute to the anxiety/depression yes. I'm not depressed now, I went on sertraline about 6 months ago due to anxiety. I guess I'll have to see what this guy says.

tacal Sat 26-Jan-13 22:54:03

It was a gp with an interest in dermatology who referred me to a dermatologist and that is how I got roaccutane. Good luck.

BookFairy Sat 26-Jan-13 23:14:54

Oh that happened to me. A private company run part of the dermatology services in my area, so I had to see a (disinterested) GP with special interest before I got to see a proper dermatologist.

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