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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?

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.

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