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Original poster

ROACCUTANE - any advice please.

36 replies

ListenToYourHeart · 17/05/2012 00:09

Hey
Basically im 21 in a few weeks and have had severe acne since I was about 15, I've been prescribed different types of antibiotics and creams which have never worked or worked for a while then stopped :(

Now the dermatologist has offered me roaccutane, im due to have the first blood test for it on Friday but im terrified, the side effects seem awful.

Has anyone had it before? Or have any advice, Im 50/50 about taking it and can't even talk the decision through with a dermatologist as she seemed very rushed today and I don't even know if I will be seeing her before I start the course as I've already received the prescription but been told not to take it until I've got the blood results!

Any advice is helpful!
TIA

OP posts:
tunaday · 17/05/2012 19:49

My daughter was prescribed roaccutane at 17. I think she had two courses of it. The side effects at the time weren't too bad - incredibly dry, peeling lips was the most noticeable one. Her acne was greatly helped by it though.

The thing is that just after she started uni she began having bad bowel problems - bleeding, bloating, weight loss, anaemia, bad stomach pain, aching joints, bad diarrhoea. It was misdiagnosed as irritable bowel syndrome for 4 years until eventually it was found she had ulcerative colitis. Her consultant said that roaccutane can cause this and that in the States there have been more and more cases of people suing the drug company for having ended up with colitis after taking it.

My daughter is now on immuno-surpressant drugs which have even worse side effects than roaccutane and although she works full time and her partner is quite supportive, her health is pretty wrecked. She has been admitted to hospital for IV steroids a few times over the last few years and she is contemplating the possibility of having her colon removed in the future as she has such bad side-effects from the drugs. Her acne started to come back a few years after she finished it too. Not as bad as before but her skin is not great. I'm sure colitis isn't a common side effect but you might want to google roaccutane & ulcerative colitis, just so you have the facts so you can make as informed a decision as poss. It is an incredibly strong drug but I also know how horrible acne can be and the affect it can have on your life.

Notalone · 17/05/2012 19:55

Have you ever tried the cream differin / adapalene. The only reason I ask is because no creams have ever worked on me but my GP prescribed this because is contains some of the same ingredients as roaccutane but is topical so none of the nasty side effects. So far it has worked on me with one spot in 6 weeks, I am so happy right now and hope and pray it lasts.

For the record I too had been to see a dermatologist who had discussed roaccutane and advised me of the side effects.I decided against it. She said I would have to take the pill / have an implant etc, and they would need PROOF because it causes severe birth defects. My word was not enough. No alcohol because of the effects to the liver. Minimal exercise because of joint pain. I decided I would rather have bad skin and after the second post on here I am even more adamant.

Good luck in your decision. Acne is no joke and I know how you feel Sad

CuriousMama · 17/05/2012 19:56

I was on it as a teen eons ago (am 43) and wouldn't recommend it personally. Yes my skin improved but I put a lot of problems that I have down to taking it. I'd weigh up the pros and cons very seriously if I were you.

Can you afford to go to a beautician who may prescribe some good skin care to try?

I know how soul destroying acne can be. Maybe they've changed roaccutane now and it isn't so bad? (hopeful)

CuriousMama · 17/05/2012 19:58

The joint pain was horrendous!! I could barely walk at one point and my job was hairstylist so lots of standing.

insertsomethingwitty · 17/05/2012 19:59

I took a course of Roaccutane a few years ago, i think it lasted 4 or 5 months. If you have any specific questions i am happy to answer them.

They can only prescribe so many at a time i had to go back every month and they would only give me my next batch after i had done a negative pregnancy test.

I had very dry lips, and it made my eyes feel a bit sore and they looked quite red. It didn't affect my mood at all.

It worked wonders for my skin, although it wasn't until towards the very end of my course i noticed any difference so dont expect instant results. Its been about 3 years since i took it now and my skin is still clear.

noddyholder · 17/05/2012 19:59

My dp was on it and is very anti

BroomForMyChin · 17/05/2012 20:01

My mum used to take it and started suffering from severe memory loss! She says she would it ever take it again. The symptoms went away when he stopped taking it.

lessa2 · 17/05/2012 20:08

I have had a couple of courses - the first at about 18 yrs old, the second at about 28. The first course was fine - I got very dry lips but no other issues that I remember. The acne did improve but was still there. After 10 years it started to get worse again so I was given another course. Again - dry lips - and this time depression. I am pretty sure it was due to the roaccutane - although it wasn't until several years later when I heard about it as a possible side effect and I looked at the dates, that I realised this. I still have dry lips now, and dry hands - and I still have (much milder) acne (at 40)!

RayofSun · 17/05/2012 20:13

I had a friend who took it and firmly believes that it was the cause of Kim having to have a liver transplant!!! I know! I think you have to be really careful with the monitoring of it.

RayofSun · 17/05/2012 20:14

Kim=him

CuriousMama · 17/05/2012 20:17

Shock RayofSun and so sad poor man.

tunaday · 17/05/2012 20:19

I think it has been banned in the States and that there have been steps to try get it banned over here.

BoringSchoolChoiceNickname · 17/05/2012 20:28

A relative took it and experienced life-threatening depression - so I wouldn't recommend it unless you've got someone living with you who could look out for those warning signs.

silver28 · 17/05/2012 21:01

I had it when I was 17 and only side effect was v dry skin which was cured by e45 cream. I've had very very few spots since then, would say it was extremely effective for me, but sounds like I was quite lucky.

SeventhEverything · 17/05/2012 21:03

This reply has been deleted

Message withdrawn at poster's request.

5babyangels · 17/05/2012 23:05

I haven't read every post so sorry if you've found youve answer already. I took this 17 years ago and rules on it have been tightened. I got very very Ill while on it and then as i came off it. Life changing actually. I would never let my children go on it. My brother knowing how it affected me still went on it. Much to his regret. He's much younger than me so was monitored more closely but even he regrets it now. Both of us still suffer from dry lips, I can't ever wear lipstick, my lips just peel off all the time. These are trivial in comparison to some of the symptoms we both suffered. At the the I thought there was no other answer but both of us continued to have acne afterwards although maybe not as bad. Please think carefully, you need your body for your whole life!!! Sad

Nobhead · 17/05/2012 23:24

I took it 6 years ago when I was 26, I didn't have horrendous acne but it was painful and bad enough to affect my confidence. My parents paid for me privately to see a dermatologist. i was on it for about 4 months and have hardly had a spot since. No side effects (yet) had dry lips and nose whilst i was on it but that was it. I don't regret taking it, my skin is 100% better than it was.

Sharpkat · 17/05/2012 23:34

I have taken it twice. First time on the NHS so a minimal dose and second time privately so much stronger.

Whilst my skin is ok now (10 years on) I would never take it again and wish I had never taken it.

I have suffered from serious depression and liver problems for the last 10 years and they started when I took roaccutane.

Everyone reacts differently but I would seriously think about how bad my skin was and if there were alternatives as this is a very potent drug and all of the research shows that a lot of people react badly to it.

mirry2 · 17/05/2012 23:43

Similat story to Nobhead - My dd had really dreadful acne and I thought she would end up with really pockmarked face and back but she was put on it when she was about 15 and now in her early 20s she has beautiful skin and no scars.

drcrab · 17/05/2012 23:45

I took it twice and it's worked miracles. My brother took it too and it was fine. We both have v bad skin. My dad and his brothers have v bad skin. I had angry pustules and they were big, hard and painful.

I didn't get dry skin or any of those things. Yes there was the 'swear you don't get preg!!' test etc.

Worth it for us.

drcrab · 17/05/2012 23:45

Oh and I took it when I was about 19. As did my brother. I'm now 38.

mirry2 · 17/05/2012 23:53

I think my daughter only took it for about 3 months and ithe acne cleared up completely, never to return. The GP had already tried her on the pill but it had no effect at all so she was referred to a dermatologist who took one look at her back (a truly dreadful mass of weeping pustules) and prescribed the ruaccutane

5babyangels · 18/05/2012 07:41

My brother and I still get acne although only mildly. However I'm now 32 and he is 25. We may have grown out of it naturally by now anyway. At the time it really did feel like the only option for me, it was wrecking my self confidence. But the side effects have pretty much plagued my whole life. My dd now 11, has similar skin to me but there is no way I would risk her ha having the problems I've had. I'm sure there are people it doesn't effect, but just not a risk I'd be willing for her to take given both mine and my brothers experience. Sad

Grumpystiltskin · 18/05/2012 16:06

I took it and it changed my life. I still (6 years later) get comments on my lovely skin [preen] and dry lips for six months was a small price to pay for the confidence to go outside in public. That's how bad my skin was (due to acne and compulsive skin picking which was awful).

CupOfBrownJoy · 18/05/2012 16:13

I took it when I was about 15 for a few months. The only side effect I got was very dry lips, but to be honest it didn't make much of a difference to my acne. In the end I was given (much milder) antibiotics and they finally cleared it up. I can't remember the name of them now though, sorry.