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Miss Soloist

The Decision You Took For Roaccutane.

Hello. I am curious to know:

What led you to the decision to take Roaccutane?

Those who have experienced negative side effects - what would you say to those considering the drug?

I am in two minds myself. I cannot decide if ultimately all alternative treatments fail should I just accept I have acne and live life the best I can or do I take the ultimate gamble and use the drug?

My loved ones are TOTALLY 100% AGAINST roaccutane. They say that it would be better to accept the acne.

My brother took Roaccutane when he was 19 yrs old. The treatment was sucessful. However, 13 years later he developed Crohn's disease and his tooth enamel has softened a little. I'd say it's probably a given that i'm already predisposed to it.

It's such a shame there still isn't a safer treatment out there!

Edited by Miss Soloist

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I was thinking that it was a huge gamble too for a while. But now I think it's only a huge gamble if you take a huge dose for a short amount of time, which is what most dermatologists will have you do. If you think a low dose would work for your particular case, you may want to try that. That's what I'm gonna try to do.

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It's definately a tough one. In my mind I've been trying to accept the worst and think, well this could be it, deal with it. But on the other hand there's that little voice that keeps repeating itself that roaccutane could be an answer. When you see how amazing people look after the drug, it's such a temptation.

Then I read people's negative experiences and think; Man Alive! I'd rather just have acne!!

Even if you took a low dose over a long period, surely you'd still be accumulating the same amount. I suppose you could perhaps process it more effectively but there's no telling what it might do in the longterm... I suppose.

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Yes, it's a very though decision. When you research it, you find a few people who say accutane was the best decision they ever made, and then every once in a while you find someone who says accutane ruined their life. It was testimonials like this one that made me scared to take accutane:

But you have to realize that this guy and others took a full dose, and kept on taking it even after they started getting the horrible side effects. If you are prepared and know what to watch out for, you can stop accutane immediately if you start getting a horrible side effect, which should help reverse the effect a lot faster.

After watching this video, I was like, "Okay, there's no way I'm taking accutane." But then I was thinking about all the people who didn't get any side effects, and I realized this guy didn't know what side effects to watch for until it was too late, so I decided to try to get low dose accutane.

And this is off-topic but since you are female you can take anti-androgens like spironolactone before you try accutane if you want.

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I guess I figured if things really started going sideways I could always just stop taking it. And the blood tests would help me keep tabs on my health. I know that Accutane is the only thing that can truly give me my life back. And I was really miserable until quite recently. My acne was all I could think about when I was out in public. I couldn't meet new people. Didn't want to see any of my friends. Felt gross... all the time. And due to the nature of my acne, my derm said it was pretty much my only choice unless I was willing to be on antibiotics *and* use topicals on my face, scalp, ears, back and chest at the same time.

Edited by inndem

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Yes, it's a very though decision. When you research it, you find a few people who say accutane was the best decision they ever made, and then every once in a while you find someone who says accutane ruined their life. It was testimonials like this one that made me scared to take accutane:

But you have to realize that this guy and others took a full dose, and kept on taking it even after they started getting the horrible side effects. If you are prepared and know what to watch out for, you can stop accutane immediately if you start getting a horrible side effect, which should help reverse the effect a lot faster.

After watching this video, I was like, "Okay, there's no way I'm taking accutane." But then I was thinking about all the people who didn't get any side effects, and I realized this guy didn't know what side effects to watch for until it was too late, so I decided to try to get low dose accutane.

And this is off-topic but since you are female you can take anti-androgens like spironolactone before you try accutane if you want.

In most respects I totally agree. You can indeed stop the medication if you present any side effects whilst taking it. I suppose the thing that unnerves me is reading how the side effects can occur much later after finishing the medication. Case in point, my brother. He would have been considered a success. He had the usual side effects of dry lips, dry skin etc, but that was all. He developed Crohns disease 13yrs later. Of course, we can't say if it is linked to roaccutane or if it perhaps initiated a latent gene, or it's nothing to do with it at all - who knows!

Have you started low dose accutane yet?

And yes! I was planning to exhaust everything beforehand. Being female does open up some more treatment possibilities. It sucks for you gents that there aren't as many hormone based options.

I guess I figured if things really started going sideways I could always just stop taking it. And the blood tests would help me keep tabs on my health. I know that Accutane is the only thing that can truly give me my life back. And I was really miserable until quite recently. My acne was all I could think about when I was out in public. I couldn't meet new people. Didn't want to see any of my friends. Felt gross... all the time. And due to the nature of my acne, my derm said it was pretty much my only choice unless I was willing to be on antibiotics *and* use topicals on my face, scalp, ears, back and chest at the same time.

Yes I can totally understand that. I hope you have every sucess with it. We suffer so much with this disease, it's incredibly cruel and no-one can know what it's truly like unless they go through it themselves.

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I say, that because your doctor is considering prescribing you this drug, you probably have exhausted all other options, but if you haven't, I think you should take a step back and look at other options. If your acne is very severe and seriously affecting you mentally, I say go for it...what have you got to lose? Would you rather live self-consciously for the rest of your life and try hiding your acne with make up, or would you rather live life with clear skin and confidence, even if you have to put up with some temporary and very unlikely long term bad side effects?

I don't think there's any point in living a life hiding your skin, when you have the tools to fix it, but that's just me. I think you need to explain this to your family. Would they rather have you depressed and miserable because of your skin?

My family is a bit like that...my mum would always go on about how my acne would just go away and wouldn't take me to the doctors no matter how much I nagged her. But then I turned 16, so I could fill my own prescriptions without my parent's consent and started trying to fix my acne with medical help.

How old are you if you don't mind me asking? If you're an adult, they can't stop you from accepting the treatment.

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I say, that because your doctor is considering prescribing you this drug, you probably have exhausted all other options, but if you haven't, I think you should take a step back and look at other options. If your acne is very severe and seriously affecting you mentally, I say go for it...what have you got to lose? Would you rather live self-consciously for the rest of your life and try hiding your acne with make up, or would you rather live life with clear skin and confidence, even if you have to put up with some temporary and very unlikely long term bad side effects?

I don't think there's any point in living a life hiding your skin, when you have the tools to fix it, but that's just me. I think you need to explain this to your family. Would they rather have you depressed and miserable because of your skin?

My family is a bit like that...my mum would always go on about how my acne would just go away and wouldn't take me to the doctors no matter how much I nagged her. But then I turned 16, so I could fill my own prescriptions without my parent's consent and started trying to fix my acne with medical help.

How old are you if you don't mind me asking? If you're an adult, they can't stop you from accepting the treatment.

I'm 28 years old. My acne is mild but it's progressively getting worse and spreading. I'm getting nasty deep spots in my cheeks that won't go away. I've been clear for 3-4 years as I'd (presumably) grown out of it but this year it returned for no reason. I'm guessing hormones. Antibiotics don't work and hurt my stomach in the longterm so i'm not keen on taking them as the acne comes back anyway. I'm considering Spiro (that's if i can get it here in uk!).

Believe me I would dearly love to have my clear skin back but I can't help but worry about the risks of accutane. I think perhaps my judgement is clouded because I've seen what it has (possibly) done to my brother. It's such a risk but again, like you, i don't want to have acne forever! x

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You sound smart and the smartest decision you could make is to never touch that drug. It doesn't work for women your acne will cone back and you will be left with a whole host of devastating side effects whether it be during or after tx. I had no side effects during tx. I now suffer from the following

Severe hair loss, dryness

skin does not produce ANY oil whatsoever this is the most uncomfortable thing you could ever imagine- the dryness means tight sore skin, premature aging

Sore red eyes

Pain in my knees

Thin scarred discolored skin with no healing ability

Brittle nails

I say, that because your doctor is considering prescribing you this drug, you probably have exhausted all other options, but if you haven't, I think you should take a step back and look at other options. If your acne is very severe and seriously affecting you mentally, I say go for it...what have you got to lose? Would you rather live self-consciously for the rest of your life and try hiding your acne with make up, or would you rather live life with clear skin and confidence, even if you have to put up with some temporary and very unlikely long term bad side effects?

I don't think there's any point in living a life hiding your skin, when you have the tools to fix it, but that's just me. I think you need to explain this to your family. Would they rather have you depressed and miserable because of your skin?

My family is a bit like that...my mum would always go on about how my acne would just go away and wouldn't take me to the doctors no matter how much I nagged her. But then I turned 16, so I could fill my own prescriptions without my parent's consent and started trying to fix my acne with medical help.

How old are you if you don't mind me asking? If you're an adult, they can't stop you from accepting the treatment.

I'm 28 years old. My acne is mild but it's progressively getting worse and spreading. I'm getting nasty deep spots in my cheeks that won't go away. I've been clear for 3-4 years as I'd (presumably) grown out of it but this year it returned for no reason. I'm guessing hormones. Antibiotics don't work and hurt my stomach in the longterm so i'm not keen on taking them as the acne comes back anyway. I'm considering Spiro (that's if i can get it here in uk!).

Believe me I would dearly love to have my clear skin back but I can't help but worry about the risks of accutane. I think perhaps my judgement is clouded because I've seen what it has (possibly) done to my brother. It's such a risk but again, like you, i don't want to have acne forever! x

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Thank you, I must admit I have been reading your posts over these forums and I have been deeply shocked and moved by the ordeal you are having to suffer. Please hang on in there, I can't imagine the kinds of hell you must be going through but please believe in your bodies ability to heal itself. I knew someone who was over-prescribed a medication - i believe it was a steroid - it put their body into shock for over 2 years but they did recover over time. A long time.

Personally for me, I think it's likely accutane would ruin my health so I ideally want to stay away from it and, like you say, it seems acne returns in many cases for women even after the treatment.

If you don't mind my asking - how severe was your acne before taking the medication?

Edited by Miss Soloist

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I consider it my duty now to try and inform others of the risks before they take that leap into the unknown. Derms don't care about you, drug companies don't care about you, your health or your future. You have one chance in this life and if you make the mistake of taking this drug you will regret it sooner or later. My acne was never severe. I was 28 when I went in it, I had persistent acne always a couple of cysts, occasionally on my back. My hair was thick long and healthy. My skin was not over oily. I had a few minor scars which lead ne to seeing a derm after being on the pill for a long time and antibiotics. I was given the drug straight off the bat, was never offered spiro or a change of bcp or different antibiotics or anything. I now realize my skin was beautiful and nothing needed to be done. I could have treated those couple scars and had beautiful skin. Due to How my skin has been affected I now have full face scarring from the breakout in the drug. Now my skin is so damaged there is little chance of ne treating the scarring and 2 yrs later I am a recluse. As I sit here my stomach is gurgling and sick, my skin is in constant discomfort, if I run my fingers through my hair it come out like a chemo pt. Why? Because I was fed chemotherapy that is destroying my cells from the inside out.

Please no matter how bad you think your acne is now, you could never imagine living with these issues. I want to die everyday and I'm inky 31, happily married, secure job loving family. I really had a wonderful life before I poisoned my body and mind.

Our bodies are a delicate balance and roaccutane is like a nuclear weapon that destroys your bodies natural balance.

Thank you, I must admit I have been reading your posts over these forums and I have been deeply shocked and moved by the ordeal you are having to suffer. Please hang on in there, I can't imagine the kinds of hell you must be going through but please believe in your bodies ability to heal itself. I knew someone who was over-prescribed a medication - i believe it was a steroid - it put their body into shock for over 2 years but they did recover over time. A long time.

Personally for me, I think it's likely accutane would ruin my health so I ideally want to stay away from it and, like you say, it seems acne returns in many cases for women even after the treatment.

If you don't mind my asking - how severe was your acne before taking the medication?

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I say, that because your doctor is considering prescribing you this drug, you probably have exhausted all other options, but if you haven't, I think you should take a step back and look at other options. If your acne is very severe and seriously affecting you mentally, I say go for it...what have you got to lose? Would you rather live self-consciously for the rest of your life and try hiding your acne with make up, or would you rather live life with clear skin and confidence, even if you have to put up with some temporary and very unlikely long term bad side effects?

I don't think there's any point in living a life hiding your skin, when you have the tools to fix it, but that's just me. I think you need to explain this to your family. Would they rather have you depressed and miserable because of your skin?

My family is a bit like that...my mum would always go on about how my acne would just go away and wouldn't take me to the doctors no matter how much I nagged her. But then I turned 16, so I could fill my own prescriptions without my parent's consent and started trying to fix my acne with medical help.

How old are you if you don't mind me asking? If you're an adult, they can't stop you from accepting the treatment.

I'm 28 years old. My acne is mild but it's progressively getting worse and spreading. I'm getting nasty deep spots in my cheeks that won't go away. I've been clear for 3-4 years as I'd (presumably) grown out of it but this year it returned for no reason. I'm guessing hormones. Antibiotics don't work and hurt my stomach in the longterm so i'm not keen on taking them as the acne comes back anyway. I'm considering Spiro (that's if i can get it here in uk!).

Believe me I would dearly love to have my clear skin back but I can't help but worry about the risks of accutane. I think perhaps my judgement is clouded because I've seen what it has (possibly) done to my brother. It's such a risk but again, like you, i don't want to have acne forever! x

If you haven't tried hormonal treatment for your acne yet, I suggest you do so before you go on Accutane. Hormonal treatments have a lot less risks associated with them and are more likely to have a long lasting effect. Yes, you can get spironolactone in the UK, but the first line treatment is usually Co-cyprindiol

Here's the acne treatment page from the NHS: http://www.nhs.uk/Conditions/Acne/Pages/Treatment.aspx

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Many thanks armadilo, I will certainly ask my GP about it x

Livetoregret - Christ! You have been through too much!! I wish you didn't have to suffer in this way. Have your doctors offered you any support? Have you ever thought of going to the media with your story? Maybe a sympathetic doctor or specialist would be able to help you if they knew the suffering you are having to endure.

I think it is a really positive and couragious act to share your experiences with us. I for one, very much appreciate hearing what you have to say. I have often been on the verge of thinking 'yeah, roaccutane looks like a good idea', but honestly, deep in my heart, i think on a personal level, it would destroy me. I already have quite fine/delicate skin (thanks to being half Irish - where I got this goddamn acne gene from -grrr!) so I can only imagine that roaccutane would thin it down to nothing. Currently I feel it's too much of a gamble, for me personally. If my acne becomes severe enough though, well, i have no idea what i would do!

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I am only 17, and It may be too early to speak, but I am currently at the end of my 3rd month on Accutane. I had exhausted every other option (antibiotics, hormones, topicals, blah blah blah) and I was TERRIFIED to take Accutane. I'm not gonna say it's been a pleasant experience so far but I will say that for me, it hasn't been nearly as scary or awful as I thought it would be. I am clear, I am happy, I am confident. There are so many "documented" side effects from Accutane that it's impossible to say which ones come from the meds and which ones would have come anyway. I would say to you...go for it, BUT listen to your body, listen to your doctor (make sure you have one that you like and trust), get your blood tested to monitor your liver. Accutane has worked for many, many more people than it's "ruined". Look up ANY drug on google and you will find a slew of negative, scary side effects. I'm not saying you should take it lightly (you shouldn't) but I can say that it has improved my life. Yes, the side effects can suck (can you say NASTY LIPS and SORE BACK) but it has been more than worth it to me so far. I'm glad I didn't wait until I was older, just because I was scared.

It is an individual choice and no one should judge you no matter which way you decide to go. Family usually mean well but you are a grown ass woman so decide for yourself! Good luck :) Oh, and look for some POSITIVE logs or videos. They are out there too!

Oh, FYI- I am a ginger ;)

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