Don’t Take A Chance With Accutane: I Did, And I’m Still Living With The Severe Side Effects Years Later

Stefan

I know, I know. In most cases, Accutane effectively clears acne and doesn’t produce severe or lasting side effects. Many acne victims consider it a miracle drug that saved their lives. Don’t get me wrong – I am very happy for those people!!

However, there are many cases – much more than the statistics since most cases aren’t reported – of severe side effects that occur on the drug and do not go away even after the drug is discontinued.

Stefan – a young man from England – is one of those unlucky people. Note that before he took the drug, he never thought anything bad could happen him. Like most of us, he assumed he was invincible. It was sad stories like his that made me decide when I had severe acne that taking Accutane just wasn’t worth the risk.


Hello to readers of Tracy’s awesome site!

My name is Stefan Lay.

‘Who the heck is this guy!?’ I hear you think.

I’m 22 years old now. Back when I was 14, I started to get spots. By the age of 15, it was full-blown acne. I had acne on my face, chest, back and even got it on my upper arms and shoulders.

If that wasn’t bad enough (and, trust me, it was) I seemed to be the only one in my high school suffering from it. Hooray for being prone to skin conditions!

I did all the things people say you should. Like anyone in the Western World, I assumed the best decision would be to turn to a doctor. This was, of course, after trying different skin care products that claim to do things they can’t.

Ah, false marketing, how I believed you… 

Being Prescribed Accutane

I’ll skip some story here and tell you that I ended up being prescribed Roaccutane (also known as Accutane) after failing to gain any relief from antibiotics or topical peroxides. I was referred by my GP to the dermatology department at my local hospital and they gave me an examination (meaning they had a look at my acne, including over my body), before deciding I was an eligible candidate for the drug.

I was told briefly about the risks of some temporary side effects. They basically said that these side effects were so rare and unreported; it was nothing to be concerned about. They put an emphasis on skin dryness, but the list of the side effects I was shown was short. Note that this was in 2005. They also focused on telling me about the risk of getting pregnant. Now, obviously, I didn’t need to worry about that… with my lack of uterus and all. They told me about a concern around the drug causing depression, but their ‘statistics’ (and I use that term loosely here) stated the risk was as low as 1%.

I didn’t question that.

Why would I? I was 15. The experts at the Hospital knew what they were doing, right? (You can see where I’m heading with this)

So, that was that. I had to wait for another appointment a month or two down the line and they would get me started with the medication. I also had to sign a contract, as did my Mum, to state that I’d been warned of the risks and what not. I had no reason to believe there was anything to worry about. I was so excited at the thought of having clear skin. It seemed like a real lifeline and I couldn’t wait to get started.

In retrospect, this was the worst decision of my life. I’m really not being over dramatic about it.

My Side Effects During and After My Course of Accutane

I was on Roaccutane for five months. I was scheduled to take it for six, but I knew I was on the brink of insanity.

I want to keep this fairly short and sweet…

As soon as I started taking the drug, my lips (within just a few days) became SO very dry. I began having terrible depression, which I’d never had before. Other things were going on. I had terrible anxiety, though at that time I hadn’t heard of anxiety, so I was just in a world of confusion. My friends nicknamed me ‘Skitz’ (as in schizophrenia) because I became very short tempered, angry and just weird.

I had no reason to feel like this.

My skin was getting clearer but, truthfully, my body was going through hell. I had dry bloodshot eyes which made me look angry and a little crazy. Basically, everything that normally produces moisture wasn’t. I got injured just by running. My exams were very hard to revise for because my brain was just not working very well. My hair started falling out. I’m not trying to blame anything on this drug. I’m just stating what I believe to be fact.

I know many people will say this drug is amazing. For them, it probably has been. I don’t get spots very often now and I was lucky to not have my acne return. But there are so many things wrong with my body now, and I’ve spent thousands of pounds and hours of research trying to get myself better – so far to no avail.

I have spoken to people who took this drug in the 80’s and they say they’ve been living in hell ever since. I have many days where I think death would be a very nice thing. I hate writing that. It makes me sound mental.

Life is just hard for me now, no matter how much I try to get on with things.

I want to voice this, because I want to protect other people.

There Are Other Ways to Treat Acne. Safer Ways.

Acne isn’t worthy of chemotherapy – which is what Roaccutane is. It was introduced as a cancer drug. I said my acne was all over my body, and it was horrible, but I didn’t actually have severe cystic acne. I’ve seen friends go through similar acne, and it just doesn’t seem bad to me anymore. Not compared to what I’ve experienced. I’ve also watched those friends carry on with life as normal. They have energy and mental clarity. I’ve seen their acne improve without really doing anything about it.

I can’t help but feel my acne may have disappeared by itself by now. I wonder what my life would look like if I didn’t take this drug.

I can’t say enough good things about this website. I am totally behind Tracy in saying that natural is the way to go. I will do my best to avoid ever taking medication again. I don’t believe in doctors anymore – at least not their methods of treatment. All they ever do is invent things that don’t actually fix anything. It’s clear that we’re all doing something wrong, and it revolves mainly around what we’re eating and how we’re living.

Spreading the Word About How Bad This Drug Really Can Be

This week will be a bit crazy for me.

I’m writing this on Sunday the 25th of November (one month until Christmas… Wow) and I’m not sure when Tracy will put this up. I recorded an interview for a documentary months ago. It’s on TV tomorrow night (Monday the 26th of November, 9PM on BBC3) and is called ‘Dying for Clear Skin’.

I really hope I can make people think twice about taking this drug. I truly believe that diet plays a huge part in this. Most people who take this, and other drugs, don’t have terrible acne that won’t go away with some support. People should make healthy decisions that won’t have awful long term consequences and I advise against playing Russian Roulette with your health.

My instincts told me something was very wrong while taking this drug, but I ignored them and listened to the ‘experts’ instead. Learn from my mistakes and take responsibility for your own health. I will continue to do my best to live a happy life, but things are going to be difficult for me now. If I had of known that my body would suffer life-long damage from a small decision to clear my acne, there is no way I would have taken such measures. I wish I could have a second chance to experiment with holistic lifestyle changes, but I can’t change the past.

Please feel free to read my short e-book ‘Accutane – The Truth’ available on the Amazon Kindle.

To see me talking about all of the side effects I live with, watch my video:

My Youtube channel can be found here. I make videos about Roaccutane, Physical and Mental health and sometimes just eating pizza.

Hopefully this has made you more aware of some things.

Thank you for having me, Tracy x

Stefan

Have you taken Accutane, or considered it? What are your thoughts on the risks?

You can totally be happy, healthy and acne free!

Just grab my free gift to you, ‘7 things You Can Start Doing Right Now to Clear Your Skin’ and get started right away!

Join over 15,000 women who are on their way to gorgeous skin and an amazing life

Comments

  1. says

    I took Accutane for several months. Kids in school called me “crusty-face” because my skin was so dry. Months later I came down with Crohn’s disease. I no longer trust Western medicine in the slightest bit and have treated my Crohn’s with alternative treatments. My acne is MUCH better for it too!

    Thanks for sharing your story. Accutane needs to be taken off the market completely by the FDA here in the US, I think it’s still available in generic form, which it shouldn’t be.

    • Tracy says

      Yes, from my understanding, the company that made Accutane was getting sued so much over it that they sold the rights to other companies who can now manufacture and sell it under a generic brand name. Different name, same stuff.

      Sorry to hear you were another victim of this drug, but I’m really glad to hear that you have managed to keep it under control with healthy and safe methods!

  2. Brian MacEachern says

    I also took this horrible drug as a teen. I experienced the extremely dry skin and lips and some of the other side effects, fortunately I didnt have any of the psychological effects (That I can remember) but years later have been diagnosed with Crohn’s. I believe it was definitely related, although my specialist (drug pusher) says it is absurd to think there is a connection!
    The past few years I have leaned how to heal my crohn’s with out pharmaceuticals, just diet. I have a whole new outlook on western medicine and pharmaceutical companies!

    • Kevin L says

      Brian, dunno if you visit this page anymore, but I would like to hear about your story and how you treated yourself as I have been experiencing severe agony in the past few years

    • Peter says

      Brian, I would also like to hear from you. I haven’t been diagnosed with IBS or Crohns, yet, but the last 10 years have been terrible in many other ways. Something changed in me, my personaility, everything. It makes so much sense now.

  3. f. says

    (Excuse my English, it’s not my native language):
    What a coincidence. I just sent you an email telling you about Accutane saving me from suicide AGAIN and now there’s this post. Yes, I have taken it, am currently taking it – in an extremely low dose, according to my own experience, this is so much better than taking about 50 mg or more/day of the drug for a few weeks or months; I take 1-2 pills A WEEK and my skin’s great – and I’d take it for the rest of my life. This is not as naive as it may sound like, I do know about all the risks and I know what I am talking about. I also wished to be able to cure my acne in a more natural way. Plus, I feel sympathy for the great amount of people suffering from depression, anxiety and other severe side effects they were not properly told about before deciding to fight their acne using this treatment.

    However, just talking about myself here: In my case, it was my acne that took years from me. It took my youth, it took my confidence, my ease. It gave me a depression I am still suffering from and will presumably suffer from for the rest of my life. And this was way before I even knew about Accutane. On the contrary, when I started taking the drug in 2005 – I was 19 at the time – and was given normal, healthy skin that I had not had since age 10/11 … it saved my life.
    Admittedly, my acne’s still coming back as soon as I have not taken the drug for a month or two. And that’s what pushed me into another deep and severe depression. I know that the depression might not only be caused by the acne but that there are other factors, however, I know it’s the main reason for me hating my body so much. I started a therapy in 2005 and continued it in 2010 after having broken up with my first love. The therapy did not help me to accept the acne, though. Plus, eating healthy, trying to be disciplined all the time by quitting sugar, flour, milk… might have been healthy but did not and still does not show much effect on my skin. Topical treatments did not help either. What helped me, again, was Accutane in a low dose. I don’t want to promote this drug or anything but want to point out that there is also another side to it, the acne itself can be just as bad as the drug. It can give you a severe depression, too. Plus, not everyone has such severe side effects. In my case, it made me wanna live again.

    I completely understand your story, though, for I had to take Interferone Alpha for a few months in 2004/5. It’s also comparable to a chemotherapy and gave me just the side effects you wrote about in your post. It took me years to recover from it. Therefore, I am with you and am wishing you all the best. I so hope that you will recover from the drug completely. As I said, it took me years to recover from Interferone but in the end it worked. I hope it’ll be like this for you, too. Love to you.

    • Kit says

      I very much agree with this post.

      I’m so sorry for what you’re suffering, Stefan. I don’t mean to detract from that in any way, and I thank you for your article.

      However, the few courses of Accutane I’ve been on may have saved me from suicide myself. I was at the point of body dysmorphic disorder and being unable to leave the house or look people in the eye without bursting into tears. There were honestly days that I just wanted to be dead – years before I even touched the drug.

      Also, but for me, it was SO, SO difficult to get Accutane. No one prescribes it easily in my experience. I went to three derms, groveled and begged, and was put through the ringer with every topical and antibiotic that exists (yuck) before I got one to give it to me years later – insisting I couldn’t have it unless I failed to improve on this drug, then that one, then that one. It was horrible and hellish, and the reason I have scarring.

      Now, I would say natural is the way to go. My experience with Accutane actually turned me onto this holistic stuff, because once I’d cleared up, I noticed my breakups corresponded to certain foods. I ended up seeing a ND and being diagnosed with leaky gut. So now I know. But then, I didn’t, and I’m not sure I ever would have if not for my experience. And it is true that plenty of people DO stay clear, without side effects and pain.

      Also, now I’m an active, happy, healthy person with a social life who goes out on dates. What?? If you told me that’d be me four years ago, I wouldn’t ever have believed you. Ever. The drug gave me my life back and let me develop the thing I grew up totally lacking – self esteem. Which is a horrible thing of which to have absolutely zero for all your years as a teenage girl (12-20).

      I’m so truly sorry for what you’ve been through, again, but it really is true that many, many people who take this drug don’t have that experience. I do not think it should be taken off the market, nor do I think it’s always the wrong choice.

    • kaysha says

      hI absolutely agree with this post. I am in the same situation, just starting 30th year of my life and still suffering from acne and very very oily skin. Unfortunately isotretinoin didnt help me permanently, so i am taking it constantly, have no side effects apart from dry lips… the only thing that pisses me off is the idea of taking it for the rest of my life, but i wouldnt have any life ahead if this medication havent had been prescribed to me. It has chenged my life, gave me an opportunity to live my life! no one who didnt face an oily skin+acne will not understand us. And there is sooo many other medicined causing side effects, even chemiotherapy may kill you which doeasn’t mean cancer should not be treated right? so GOD bless Roaccutane and all its generic versions. And i really dislike when people that can cope with their acne want this drug to be banned-think about aothers who may not be so strong. i personally dont care about my liver, about anything i just want to lead a normal life, happy life, and this drug helps me to do this.If its withdrawn at any time i am withdrawn from life as well

  4. f. says

    Sorry for the long post. But I really don’t think they should get off the market because despite all these bad things, this drug has also helped people and kept people from suicide – HOWEVER, the patients must be informed about the risks! The lack of information seems to be a common thing, though. I was not informed well about Interferon either. I got to know that it was used as a chemotherapy months after having been on it because I found it on the internet. My doctor did not tell me.

    • Tracy says

      Hi there – I’ve actually been thinking about you and wondering how you’ve been doing. Thanks for sharing your experience with Accutane – you’re right there are definitely two sides to it – obviously it can save or ruin lives, and I am sincerely happy that it has made such a positive difference for you (and anyone who else who has taken it successfully).

      I think the most unfortunate part about the whole thing is just how easily they prescribe it, for people who don’t even have severe acne, or in your case – people who aren’t on the brink of suicide due to the acne. And how they prescribe to teens with regular teenage acne that will likely clear up in a year or so on its own without emphasizing what a risk it really is. Even if they did, it’s been shown that teenagers don’t have the part of the brain responsible for danger perception fully developed – that’s why they tend to have this bubble of invincibility around them. I know I did, maybe it was because I was older when I got severe acne that I realized that it was too risky.

      Anyway.. I’m glad to hear you recovered from the side effects of Interferon, and that others here seem to have healed from their accutane related Chrohn’s, so maybe there is hope for Stefan and others like him :)

  5. says

    Great that the author has reached out and spread his story. I have a very similar one and am STILL dealing with acne because I had to take anti depressant drugs after finishing Accutane because it had given me depression…and the SSRI’s made me break out horribly!! Ridiculous. Western Medicine in a nutshell….Props to you, Stefan.

  6. Paula says

    Eny, I wanted to say same :D
    Hehe.

    I’ve never taken this medicine, but I’m fighting my whiteheads with Atrederm. It shouldn’t (rather) be dangerous if it’s just a liquid used for skin, right? It made my skin more sensitive, but it’s okay when I can moisturize it with jojoba oil :)And of course, I remember to use UV protection.
    Tracy, many thanks for this amazing site!

  7. Ally says

    Oh Tracey I had to hold back the tears whilst watching Stefan’s video! He’s so brave for talking so openly about his side-effects. Accutane is the devil and I can’t believe it is still being prescribed. I recently met with a friend of mine who has started taking accutane. I was so shocked! A couple of years ago I had passed on to her details of my amazing nutritionist who specialises in the treatment of acne and helped me eliminate mine. I was certain my friend would contact her especially after I had shown her all my before and after pictures and she had seen for herself how much my skin (and general health) had improved WITHOUT any drugs. This just makes me so upset… Doctors prefer to keep these pharmaceutical companies alive than there own patients.

    • Kathy says

      Ally, Can you tell me who your Holistic doctor is? My son just went off the Accutane after 2 months because the pain was so bad in his knees. I hope there are other alternatives. My daughter did the program and was cleared of her acne but I think the doctor was too aggressive with his dose for my son. Anyway, let me know if you can help. thanks. katre

  8. Erin says

    Thank you, Tracy and Stefan! This is a decision I’ve been going back and forth over for YEARS. I hate that Stefan suffered this way and continues to suffer, but he is so brave for spreading the word to help others. You both have been so instrumental in how I think about my acne.

    Thank you, thank you, forever thank you.

    P.S. Stefan…are you single?! ;)

  9. AD says

    I don’t know how I feel about Accutane. I wish I didn’t have to take it. I wish there was something else that worked to clear my skin. I’ve been using Accutane on and off for the past few years at a very low dose. I would take a 10mg pill every few days and it would clear my skin up. I would do this for a few months and then stop. My skin would be clear for a while but then the breakouts would return. No matter how much I resisted starting it back up again, in the end I would always resort to Accutane. Again, for some reason, low dosage works for me and that’s great because I don’t get to experience the more serious side effects like depression and feeling suicidal.. but even on a low dosage, there has been some permanent side effects I’m afraid. I have lost and continue to lose A LOT of hair and my eyes are dry and bloodshot at all times. Beginning of this year I decided to kick Accutane completely. I managed to go 6 months without it. At first, skin was ok.. but then it got really bad. Nothing I tried would help. I lead a healthy lifestyle. I eat well, exercise on a regular basis, drink a lot of water. I’m very laid back and relaxed so I’d say my stress levels are pretty low. I kicked dairy and sugar, I consume no junk whatsoever and still, my skin won’t clear on its own. Needless to say, I am back on Accutane again. 10 mg every few days and my skin is clear again. I feel horrible putting this poison into my otherwise healthy body, but for someone that has dealt with constant breakouts their whole life (im 31), sometimes I think it’s worth it.. or not! I don’t know! Acne makes one desperate.

    • f. says

      Exactly the same with me. I am perfect with a low dose, sometimes it’s even like… a pill every now and then will work like a miracle (however, that must show us its strength, right…?) – whenever I stop, my skin becomes bad and worse. As you said: In the end, I rely on Accutane. Have you ever tried Fruit Acid Peels? They can be expensive, however, I saw the absolute success with a friend and at least this is no drug that needs to be taken (though I know that it can be harsh on the skin). I had my first on Friday (5 more to go from now on) and have very smooth skin already. I think it really might be an alternative to Accutane, especially when you are suffering from oily skin and white-/blackheads.

    • sarah says

      I took a low dose as well when I took it, but unfortunately I still had severe side effects. I understand the being healthy thing and it not working, so you go back to accutane, but that is how the drug works. I put a little of my experience down below, but I forgot to mention I had mild acne when I took it, and when I stopped my face turned into a million little clogged pores. My pores and acne completely changed from mild to moderate with clogged pores. It has been several years, but those things eventually went away with the accutane completely out of my system. Just a suggestion, but one reason the healthy lifestyle may not be completely working yet, is because you may still be having the effects of accutane in your system. It may not be, but I just wanted to let you know the years I came off of it my acne was bad, but over time has almost gone away, so it may actually be the accutane just messing with your body still.

  10. Cari-Kate says

    I saw the doctor this past week for my addiction to picking (and popping) at my face thats been ruining my complexion for the past year. The first thing she decided to do for me was have me see a dermitologist about Accutane. That appointment isn’t for another month or two but I will be honest, I was pleased with the idea of trying the drug. Mostly because a couple of my friends went on it and now have flawless complexions and seem to be totally healthy. Now seeing this….I’m worried. Acne isn’t my problem its more picking at my face and body and I have not found any solution that as helped me with my awful habit. Quit frankly, Accutane is my last resort. Is it worth the risk even if the severe side effects are only 1% of Accutane users? Please help.

    • Tracy says

      hi Cari-Kate – I’m confused – if picking and popping is your main issue, how is Accutane going to help this? I mean I assume you must have some acne to pick and pop (although you say it’s not really your main problem), but usually this is an fear based/low self worth sort of a habit that has an underlying emotional issue. I don’t really understand how Accutane is going to fix this ?

      • f. says

        Also, Accutane will make your skin so sensitive! What if you won’t be able to sop the picking while on Accutane? This could give you pain and scars. When it comes to picking, I think that maybe a therapy’s a better solution for it might be a result from stress, nervosity…

    • sarah says

      Don’t take it..I’ll post my story down below. I had a picking problem as well, but to be honest thats more of an emotional issue you need to work on with yourself, and you can do it. I had friends who had also taken it, which is why i took it, and they developed side effects years after and some of their acne came back as well. Trust me, i felt the same way before I had taken it. And it isn’t one percent, I really think thats the only reported number.

      • Tracy says

        Yes, exactly, 1% is the reported number which means that hundreds and probably thousands of cases don’t get reported and counted into the statistics

    • Alexa says

      When i was on isotretinoin (accutane) i would peel a piece of skin on my lip and it would rip right off the lip and keep going. it may have contributed to an irregular lip line. also… unwanted facial hair, constipation, and sexual dysfunction are not typically things talk about freely. Your friends may seem fine, and pretend that they are fine, but how would you really know? Also, it is a teratogen causing disformities in babies – I can’t help but wonder how long these toxins stay in our body. What kinds of subtle effects do they cause to our unborn children after coming off the drug?

  11. Gabby says

    I always thought about taking Accutane because my Mum did and she claimed it was a miracle drug. I’ve never had the severe cystic acne- just lots of pimples on my face, neck, chest, shoulders and back. When I did the research and found reviews of the drug, even though my doctor said the side effects were rare, I found mountains of negative reviews and something inside me told me not to and I’m so glad I didn’t because as I was searching for alternatives I came across this website and I haven’t looked back!!! What has helped me is diet, exercise, sun and supplements- holistic health. I look back as a teen and wish that I hadn’t taken antibiotics and The Pill as I really believe they have made my acne worse as I still deal with it at 27- BUT after about 18 months of healthy living my acne is the best its been since I was a teen :)
    Thanks Stefan for sharing and thanks Tracy!

  12. Toni says

    Hey I know this guy, I saw his youtube channel a long time ago. I feel bad for him, but I have to say that I think he’s making his problems much worse by building his life around them. I went on Accutane briefly, and while I got some bad side effects I found they were all seriously heightened by stress. When I cut my stress down and went on with my life I found they went away completely.

    Obviously not everyone is the same, so I’m not trying to insinuate that this guy could eliminate his problems as easily, but there’s something very unhealthy about centering your life around those issues. In fact the last video I saw by this guy was months ago, in which he said that he started to feel better after cutting down his stress. I took that as a sign that he was starting to see the light, so I’m kinda surprised to see him popping up on this website, at it again.

    • Tracy says

      Hi Toni,
      That is a good point (although I am also not trying to say I know how it is for him or know what he’s going through), but you see it with acne itself all the time.. the more you focus on it, the more stress it causes, and then the more there is.

    • f. says

      Well, I understand him for I had just as bad side effects while being on Interferone Alpha. It affected my psyche and gave me a bad depression. I was not in a good state anyway for I already had a problem wih the way I looked because of my skin but then I also started to suffer from severe hairloss due to Interferone. I lost a lot of weight, I always had flu-like symptons and had to take Paracetamols against those. It was ridiculous. I had to stop taking the drug because I simply was not able to live a normal life on it. However, it took ages until my hair stopped falling out, it took ages until it was like it used to be before. Even my curls were gone! Now, years later, I feel like I have overcome it. Considering all this, I can relate to his feelings and also his bitterness, for there’s always the thought ‘what if I had consulted another doctor for a second opinion’, ‘what if I had read about all this on the internet BEFORE taking the treatment’ etc.

  13. says

    Hey y’all.
    Thank you for the kind responses.

    Apologies Erin, as I’m taken! :P
    Toni – I agree with you entirely. If you focus on something that is clearly a negative situation and focus most of your energy on it, it can make things seem unbearable. However, part of my knows that I need to keep spreading the word. Knowing what I know… I just have to keep doing it, though I think my videos have shifted a fair bit lately and I try not to repeat myself.

    Personally, I find it impossible to escape this. Anyone who gets sick suddenly realises what they had with health. I can still function, but no matter how much I pretend, my life is pretty rubbish now. Part of me KNOWS there must be a solution to this, so I can’t just give up and accept things the way they are. Because this isn’t what anybody should have to settle for.

    I’ve had a shift in perspective, but I will still always be looking for a way to improve this.

    I’m curious to know – ‘f.’ and Brian – What did you do, specifically to treat your crohns? I don’t have it, as far as I’m aware, but clearly something bad has happened to my digestive system. Message me on YouTube if you can! Would appreciate it.

    Also, here is a link to the documentary that aired in the UK:

    http://www.youtube.com/watch?v=PgpYS33kMVc

    Thanks,

    Stefan

    • f. says

      I am sorry for I don’t have a youtube account. I do not suffer from Crohn’s, you must have gotten me wrong – I think that was someone else. However, I used to have a flatmate suffering from Crohn’s disease and all he did was changing his diet and eat only wholefood (after Max Otto Bruker). He did not have to take any medication but felt great.

      • Tracy says

        I also have a friend who has Chrohn’s… so severe she was in the hospital and everything, told she’d be on lots of drugs for the rest of her life. She changed her diet to whole foods and now she’s totally fine.

    • Eric Turk says

      Hi Stefan,
      I am 21 and have been taking Accutane for a while with just the very chapped lips. I now have to carry chapstick everywhere I go and reapply every 2 hours or so to have healthy lips (such a painstaking drag). No other apparent symptoms, besides really dry boogers.

      I have a hard time believing that depression, anxiety, and maybe schizophrenia/schizoaffective disorder are a direct result of Accutane. You said you began to take Accutane at the age of 15 yes?
      Well, I found the following graphs online.

      http://www.phac-aspc.gc.ca/publicat/miic-mmac/images/fig_4-1_e.gif

      http://www.phac-aspc.gc.ca/publicat/miic-mmac/images/fig_2-1_e.gif

      http://www.schizophrenia.com/photos/schiz.age.impact.3-1_e.gif

      Each of these show that Anxiety, Depression, and Schozophreniac disorders occur around the same time that you began taking Accutane. Just something to think about. I’m not saying that Accutane didn’t cause all three of your illnesses, but I think it’s a stretch to assume so. Just a thought. Tell me what you think. Thanks!

  14. sarah says

    I definitly agree with you that most people don’t talk about it enough. I took accutane twice for one month each time, and it was seriously living hell. This drug made me crazy. My sister also took it at the same time. I developed severe panic attacks and horrible painful intestinal problems(along with dry eyes, lips, skin, hearing loss, painful joins)…and thats only in one months time. The next year without getting extremely graphic developed a severe pain in my back and side and the drs. believe they were cysts but never found out what they were. The next year I developed hypothyroidism as well, which I eventually fixed. I never had these problems before, and I believe its all due to accutane messing with my body. It’s 3 years after I took the drug and I just now feel like my body is healthy again. My sister has dealt with intestinal problems ever since and has been to the hospital many times. My point is the drug is very dangerous and is definitely not worth the risk. I believe there are many more people that have had side effects but they don’t talk about it maybe because they are ashamed or the clear skin was worth the risk.
    But I would like to add that Toni makes a good point. I know that this guy is not making anything up because I experienced very similar side effects, but the more you do concentrate on something, the worse it gets. I can say my health problems went away with time, but I truly believe one of the main reasons was I stopped worrying about it completely. I think that is one of the biggest ways your body can heal. What you believe is your reality, will be.(I’m talking more for the anxiety, depression side effects).
    Anyways this drug is really no joke, and it is not worth the risk. I will never come near it again even if i developed severe acne.

      • sarah says

        Well that is a little more complicated, because obviously what worked for me won’t work for everyone. First let me start by saying I had a very borderline low grade of hypothyroidism. Doctors of course started me out on synthroid, but after doing my own research I quit the medicine, basically ate a lot of food(and ate much healthier), and kept my stress down. My body eventually leveled itself out, the better I treated it. Obviously it wasn’t just that, but it’s too complicated to explain everything here so I will suggest some books and websites that have helped me. The first website is one Tracy has mentioned before, but he talks about the thyroid very often: it’s 180degreehealth.com. I also bought the Schwarzbein principle a couple years ago to learn how to balance my hormones. Living Well With Hypothyroidism by Mary J. Shomon, and What your doctor may not tell you about hypothyroidism is another one. These all helped, but like I said the biggest thing for me was to stop worrying about it, and also as I continued to be healthy my body healed itself. Saying that though, I do get symptoms of hypothyroidism sometimes if I’m very stressed, or not taking care of myself. Hope that helped.

    • f. says

      Taking it for only one month means that you must have been on a high dose, though. i have always taken Accutane in a low dose but for a longer period – which does not only keep you acne free for longer but also keeps down the side effects. When I started it for the first time, I was afraid of the side effects due to my Interferone experience and took 10 mg every second day. I hardy had any side effects except for dry lips that could be treated perfectly using Carmex. How much did you have to take? I mean, there’s a cumulative dose you have to complete, you must have taken more than 30 mg a day, no? I am not surprised about this being hell. I am acne (and excess oil) free while taking 10 mg A WEEK – that shows how harsh this stuff is!

      • sarah says

        I actually didn’t take a high dose..I can’t remember what they started me out on because it was so long ago but maybe 40 mg at first(or whatever the general dose is that they prescribe most people). but it was too strong for me so I would take 20..and I wouldn’t even take it everyday. So I actually didn’t have a very high prescription and it still messed with my body. My sister took around 40 mg a day for 4 months I believe. I considered the 10 mg a day the second time around but actually they told me nobody made 10 mg, so I had to take 20! either way it was way too harsh for my body, no matter what the dose was.

  15. says

    Thanks Stefan for getting the word out there on accutane. Although, not everyone has side effects, people should be aware of the dangers! I still think it’s crazy that a chemotherapy drug can be prescibed for acne.

    It sounds like your side effects really suck, but I think if you are persistent you can get healthy. I know people who have had cancer, gone through years of chemotherapy and managed to 100% regain their health through holistic means.

    I had a similar experience with taking a birth control pill for acne, which ended up making my skin worse and giving me weird side effects that lasted for years! I did manage to get my health back though, but it definitely took time and patience!

    You just need to get things back into balance! Good luck!!!

  16. Sampson says

    Awesome post Tracy. My favorite vid of yours so far. You summarized what’s wrong with the pharmaceutical model in 5 minutes.

  17. Katy says

    I am now 22, and took Accutane when I was 17 years old. I had tried EVERY other pill or cream prescribed by my dermatologist. While my acne was not horrible, horrible, I still have acne to this day. It didn’t do much of anything for me.

    To me, its frustrating because I do everything right. I recently came to the light about modern medicine and have steered clear from it since. I only use organic-holistic treatments on my face and take plenty of vitamins.

    It may be safe to say that the only thing that Accutane did for me was make my skin worse..

  18. Porridge says

    I took Accutane 2 years ago. I must say I didn’t really experiment that much side effects during my course. Very dry lips, fatigue, horrible initial breakout (of course). The only side effect that really worried me was the loss of my period during 6-7 months. As soon as I finished the treatment, my period came back to normal. I really think it messed up with my hormones even If I wasn’t taking any contraceptive at the time. I dunno if it’s a coincidence, but now, 1 year and a half after I finished the treatment, I noticed my facial hair was getting more noticable. Nothing like a beard, but now I’m really paranoid about it but I’m scared it’s gonna get worse. I ordered some bottles of estro block I used in the past that really worked well for my skin, but now I’m scared that it will lower my estrogen level and that the facial hair gets worse because of too much testosterone in my body. If anyone could reassure me about it? XD

    Anyway, my acne came back after 6-7 months. It’s not that bad, maybe 1-2 big pimples a month with smaller ones from time. The funny thing is that while I was on accutane, I never broke down about my skin. I was like ”Well, I know I’m gonna be ugly for the first few months” so I was prepared for the worst. I got the worse cysts of my life during the first months of the course, but I was dealing pretty well with it because I knew it was going to get better. But now, when I’m getting a normal pimple, it seems to be the end of the world, because I felt like the drug would save me from acne for the rest of my life. Anyway, after a while, I decided to test my food intolerances with a naturopath and discovered that I was allergic to gluten, dairy and eggs. I’ve been able to manage my acne pretty well since I stopped eating these, but still, it sucks not to be able to eat whatever I want. I still break out but eh, that’s life.

    Soooooooooooo. My recommandation is that accutane is not worth it based on my experience, but I know it has helped many people and that’s pretty awesome for them.

    • Tracy says

      Hi Porridge,
      From my understanding, it helps your body to detoxify the bad estrogens, but at the same time helps to increase good estrogen. So I don’t think that taking it would cause testosterone to run rampant and cause more acne!

      • Porridge says

        Thanks for your reply! I’m gonna try it if I manage to receive it some day. It’s been a month since I ordered it! D:

  19. Lorena says

    Thank you for this post. Tracy, I found your site back in the spring, just a few days before my scheduled appointment with my dermatologist to start on Accutane. I had a very bad feeling about it, but I was desperate. I was looking for videos on youtube about the drug, and found yours…it was a miracle. The next day I cancelled my appointment and started my holistic journey to “clear skin and happiness.” ^_^ I still have quite a ways to go, but I hope to get there someday. THANK YOU!

    Stefan-Thank you for sharing your experience. I’m so sorry that you’ve had such terrible problems as a result of this drug. I wish you the best.

  20. Bella says

    Hi All,

    I have to share my story with acne quickly. My skin was perfectly clear until I was 24 and then a new job and breakup gave my cystic acne that I tried to clear up naturally for 4 years! I had been following the holistic route prior to getting acne so it was no mystery what things to try (Acupuncture, Candida Cleanses, Liver Flushes, Colonics, Raw Food diet, Food Intolerance testing and strict adherence to that diet, NAET treatments, Infrared Saunas, supplements galore, etc!!!)

    After 4 long years I developed Body Dysmorphic Disorder and was so depressed I cried myself to sleep every night and laid in bed all day thinking of ways to end my life.

    I went to another holistic MD who also practiced psychiatry. I told her that I wanted to take Accutane but was too AFRAID of what could happen. She told me that I should embrace the treatment and face my fears. I needed to get a life back.

    She advice me to take a course and get lymphatic massages weekly to move the medicine out of my body. Drink tons of water, drink aloe vera juice daily to lessen my chances of IBS developing down the line. I also used an infrared sauna while on the medication.

    Basically, as soon as I started taking it, I became a happy person who got my life back! Within a year of taking it, I got married and I just gave birth to a healthy baby. I had a very healthy pregnancy.

    My holistic MD checks my blood every 6 months now 2 years post treatment and my body is as healthy as can be!

    I thank Accutane every day for getting my out of the darkest place I ever could be in. No one should live that way. And this is difficult for me to say because I believe in holistic natural medicine. Sometimes natural therapies are not enough to save you from the physical and psychological effects of acne.

    xo

  21. Annemarie says

    Aw man. I know its bad, but I was so desperate. soo so desperate. after having done enemas, grain-free, dairy-free, all whole foods, supplements, natural skincare, sun and earthing, exercise/yoga, drinking lots of water, candidates cleanse, liver cleanse… the list goes on. But I was still getting acne. still breaking out, and still making more scars. I’m on accutane right now, and it’s working. I wish There could have been another way, I wish I could have said I cleared my skin with holistic methods. But alas, no. I don’t recommend accutane, and I think one of the biggest problems is with how readily available it is. I know people with very mild acne who are on 6 month treatments! It should serve as a last resort, and even still it might not be worth it to some. I just can’t imagine living with this and creating more permanent scars just until I “grow out of it”. What if I never do? Better to do this now while getting pregnant is still far in the future. I can’t help regretting I didn’t sta start sooner. I just kept telling myself I would never do it. but I finally did anyway. There is just sooo many thing that can contribute to breakouts in todays world, and the endless stress just isn’t worth it. I’d rather be on accutane for a few months and get it out of my system, than be forever hating to look in the mirror.
    Anyway, Stefan, have you looked into the Primal diet? It might could help you out. It seems to be a cure-all, but I’m not super dedicated which is why it might not have ever helped my skin. So sorry you had a bad experience with this, but gosh your skin looks great!! wishing you all wellness!!

  22. Myranda says

    This brought me to tears, for I went through the same exact experience, and now at 19 still have bad acne and suffer from the lasting side effects of the drug. I stayed on the drug for 8 months desperate to “deal with” the side effects for some relief of my acne. My mom and dad wanted me off the drug after a few months but I begged them to let me complete the 8 months that the doctor would allow. I completed it and was heartbroken when the results were less than satisfying to say the least. that was 4 years ago when I was 15, now at 19 I am still trying to cure my acne. I found this site today and love everything Tracy has said. I am looking forward to this and am be as positive as I can. Thank you so much for sharing your story!

  23. Kait says

    This articles definitely made me cry. I took Accutane in 2003 at the age of 16. Before the Accutane I was known for being outgoing, optimistic, and “bubbly”, regardless of my skin imperfections. It wasn’t until after I stopped treatment that the depression set in. In 2004 I became secluded, severely depressed, and suicidal. I started seeing a therapist and was given antidepressants. My acne returned, but my depression subsided. I have attempted to ween off of antidepressants a few times over the years, but I have only lasted about 6 months drug free before plummeting into suicidal thoughts again and getting back on medication. I have changed my lifestyle dramatically over the past couple of years; eating whole foods, cutting out my use of chemicals in the home, meditating, but I am too afraid to give up the antidepressants. I hope to some day free myself from the drugs, but I’m not sure how I will find the courage to do that. Accutane was a terrible decision.

    • Tracy says

      I’m so sorry to hear this Kait :( I hope one day you will be able to get off them and have it be okay. *Hugs*

  24. Sarah says

    I took accutane and it was a hard decision to make, I was so low and frustrated with my skin after years of changing my diet. I was already depressed and anxious so I didn’t notice much difference when taking it.. Although I did feel slightly more anxious at times. I knew the effects would have on my liver, and the liver is at the root of those emotions, depression, anxiety and anger. I decided I would cleanse my liver after I stopped takin the drug. I believe that everything happens for a
    Reason and I think that cleansing the body after taking this drug had the ability to reverse any bad the drug has done.. And focus on meditation and changing the mind set, the mind is so powerful and I believe is also at the root of all problems/challenges. Whilst I do kind of regret taking accutane I also don’t because it brought me to a path that has changed my life and is my passion and love for life:)

  25. Alex says

    I’ve been taking Minocycline and used 0.05% tazorac
    for 6weeks and my acne got really worse. So i visted a dermatologitst a couple days ago and he wants me to take Accutane. I have researched about Accutane and I am awared of the side effects. My friends also took it and they look so flawless. However, they told me not to take it because it is not worth the risk. I cant make the decision. help me please….

    P.S. I have had acne since high school and i am now 22.

  26. Mary says

    Joint paint and stiffness

    Has anyone of you suffered from joint pain, knees, feet and shoulder tenderness and stiffness while on accutane. I’ve been on it for two months now and am worried about these side effects causing permanent damage…

    I phoned my dermatologist, who was not avail, but his secretary tells me she hasn’t heard of anyone suffering with joint pain.

    Dying to hear that I’m not the only one….

    Thanks
    Mary

  27. Jacob says

    About 90% of what you said in that video is what I deal with too. If you’re in your teens and still going through puberty, don’t take this shit. I was on accutane for three cycles, and yes I was depressed with acne but if i could trade acne for the problems I have now I would gladly take the bumps. Fuck the doctors who recommended this drug when I wasnt mature enough to realize the long term risks. The only thing that saves me now is weed.

    Jacob

  28. Greg D says

    I’m a dad of 2 great daughters, one who did not get more than a couple of pimples in her teens, and the other who was so self-conscious and so into thinking that her peers knew better that she believed that her mild acne needed accutane. She started on it when she was 14 and remained on a mid to high dose for about three years. She was always a bit shy and was very slow to trust strangers. I 100% blame the drug (which was prescribed by her family doctor) for her altered mental state. Be careful before u take this drug!

  29. Alex says

    Thank you everyone!

    I decided not to take Accutane and i started using witch hazel to treat acne. has anyone used Witch Hazel to treat acne??

  30. Tori says

    I am so glad to have seen this video. I took this drug at the age of 15 (2006) for my acne. This drug was a last resort as I had literally tried and been prescribed everything possible. However, it has turned out to be one of the worst decisions I could have made. I am now almost 21, but I feel like I am going on 80. I have chronic back pain, as well as other joint pain, especially hips and knees. I cannot sit, or lie in positions for extended periods of time without excruciating pain and overall tightness in my joints. My joints crack and pop like that of an elderly person. It has gotten to the point where I cannot sleep through the night. There is no comfortable position to sleep in and I wake up every morning feeling as if I have been hit by a train. Also, I am extremely fatigued literally all the time. I have to take frequent naps and activities that I once enjoyed (like tennis) now cause extreme exhaustion and pain. I have always been a healthy and active person. I also have developed extremely irritable bowels. My digestion is all out of whack. Everything I eat, causes me issues. I have also experienced many of the symtoms Stefan mentioned while on the drug years ago, like excessive sweating, extremely dry lips, eyes, etc. I have also dealt with the severe anxiety and depression. My anxiety still persists and I completely relate to Stefan when he says he just wants to hide away from people and often feels awkward. I am still dealing with this issue every day. I have not been to a doctor about my symptoms, because honestly they have become the norm for me and I never thought to, but now they are getting progressively worse and severely impairing my life. I am only 20; I should not feel like and elderly person!

  31. Kyle says

    I feel bad that he had to go through the side effects but as soon as he started feeling the terrible side effects he should have stopped. That was his fault.

    • Tracy says

      I believe he did stop the treatment before it was through. Let’s be compassionate without blame, he was a teen and he made a mistake not finishing it sooner. He had no idea the side effects would be permanent.

      • Shannon says

        I agree on the compassion part. Even as adults, we’re also conditioned to trust our doctors to take care of us and when they reassure us that side-effects are “normal”, it’s easy to ignore our insticts.

  32. Shannon says

    I’m sorry for what this young man went through from this drug and I know there are similar stories with respect to Accutane.

    In the late 90s, I took Accutane not once, not twice but three times. I have very mixed feelings about Accutane. I was 17 when I first started taking it. At that point, I had had acne since I was 8 years and like Stefan it was all over my face, back, chest, shoulders and upper arms. I had been bullied and harrassed for years, my self-esteem was in the toilet. I had seen a derm for years and tried every drugstore tx and prescription under the sun. My derm was very reluctant to give me Accutane but after everything else failed, she agreed to give me Accutane. The only side-effects I was told about where increased cholesterol levels, dry skin, and possible depression but this was down played. I wish someone had mentioned at the time this was a chemo drug because I think it needs to be given the respect it deserves – when patients are given chemotherapy for cancer, they are given very specific lifestyle recommendations to help their bodies cope…I think this is just as important for Accutane.

    I was lucky in that I did not have any debilitating symptoms. It did clear the cystic acne on my body but the acne on my face kept returning (come to find out years later, I have PCOS so it makes a bit more sense now). It did have positive benefits for my skin and I’m thankful for that. Honestly, in some ways it saved me psychologically at a time when I really needed it – I was entering adulthood and needed to feel more confident. All the spirituality or therapy in the world wasn’t going to help with that.

    However, although I don’t have Crohn’s I am 99% sure that this drug has permanently affected my bowels and digestion. I have chronic constipation and I need to vigilent in managing it because I have ended up an obstruction for no good reason in the past. I am also easily prone to IBS-like symptoms that were not present prior to Accutane. So the whole experience is bittersweet. Was Accutane worth it? Honestly, I can’t give a black or white answer to that question either way.

      • Shannon says

        Kevin, there’s a few things that have worked well for me digestion wise – biggest was getting IgG food intolerance testing (which I did at the suggestion of this blog). Turns out I’m intolerant to gluten and eggs (I also had genetic tests for Celiac so I know that’s not it). I cut them out completely – took about 6 months to balance everything out but has made a big difference and on the rare occasions I “cheat”, I definitely notice a difference! I’ve also tried a few brands of probiotics but Align works the best for me. And lastly, I also found ditiching the birth control pill helped a bit, as well…although that may not be a remedy for you ;)

  33. M18 says

    (I’m not enlglish speaking but I will try to formulate myself as good as possible)

    I’m a 18 years and currently doing my 3rd accutane treatment. I took it for the first time when I was 14 or 15 years old. I’ve had acne since I was 11 years, and it later developed into cystic acne, which absolutely crushed my self esteem. I had huge cysts appearing in my face every day. Combined with this I also developed very servere asthma at the same time, which caused me to spend alot of time in the hospital throughout my teens.
    My face was absolutely cleared after the treatments, but the cysts started appearing again after a few months.

    Right now I’ve been on accutane for 9 months or something. My skin is 100% clear and my face looks better than ever. When it comes to side effects, I’ve had the regular stuff such as dry lips and eyes. Lately I’ve lost a bit of hair on the sides of my head, which I don’t know if is due to accutane or something else. Oh, and I have major mental problems as well, which I can’t tell if is due to the accutane or all the struggles I’ve gone through in my teens. Honestly, the last 4-5 years of my life have been horrible. I’ve pretty much isolated myself and basically played videogames all day. I’m failing at school, and I’m worried if the acne will return after I stop taking accutane.
    I’m determined to do anything in order to prevent my acne from returning. Seriously, I will do anything.

  34. Hailey says

    I am an 18 year old girl. I am about to go into my 3rd month of Accutane. Aside from the horrible cracking and bleeding of my lips, muscle pain, and nosebleeds I have had some other really scary side effects. 6 days into the medication i started having numbness in my hands and feet. i was told that it was not a symptom of Accutane but did some research myself and found that it was. My doctor diagnosed me with pernicious anemia meaning that i no longer had the ability to effectively absorb B12 and that i can no longer produce red blood cells at a normal rate. I have had extreme numbing in my hands and feet and swelling supposedly caused by lack of oxygen to my veins so they couldn’t pump the blood properly. Now they are saying that i may have neuropathy. No one seems to know what is going on with me and I’m still hearing from some that it isn’t caused by the Accutane (although my doctor is starting to take my complaints more seriously), but i haven’t ever had problems like this before. Either of these things will supposedly be with me for the rest of my life and pernicious anemia can be deadly. What i can say only specifically about my dermatologist is that not only did they not inform me of these potental side effects but they denied that the symptoms I was have are related to the medication until i came in with studies I had found on my own. I do not recommend taking this drug without doing A TON of research into how it can effect you. I honestly thought I had done enough research but I had no idea it could be like this. It is really scary to be where I am at, think first.

    • says

      Hi Hailey,

      thank you so much for sharing your experience with Accutane. I‘m sure that it‘ll be of great help for many people. In addition, I hope that you‘ll be able to recover completely from those tremendous side effects! I send you lots of love and strength,

      Svea
      xox

    • Peter says

      Hi Hailey, please would you be able to elaborate on the studies you have used to illustrate your case to your doctor? I am putting together a report to give to my doctor and any other professional that I see in the next few months. I haven’t been feeling right for a long time and it’s only this week that I’m realising it might be, probably definately is, accutane that did this to me. Would be great to hear from you. Peter

  35. Stephanie Bajzik says

    I hope you get this message Stefan. I am so glad to hear I am not crazy. I am 26 years old and have been suffering from anxiety and depression for over ten years. But I have horrible health problems as well. At such a young age I have lost my gall ladder to biliary disease which is most common in the elderly. I struggle with severe abdominal pain, nausea and vomiting daily among so very many other symptoms that keep me going regularly to my gastroenterologist. I am unabl to work. What course of action should I take my physical ?

  36. Ricardo Robert says

    I was just starting to feel good about myself and ready to start blossoming socially when hormones and acne made their ugly entrance. The acne was unresponsive and caused me shame and depression and probably spoiled my chances of a highschool relationship. After several months I gave in to trying Accutane. I knew about the physical hell from a friend, but I had no warning of the mood effects. Sure enough I suffered extreme dryness. Despite use of moisturiser and chapstick my lips painfully dried out, cracked and bled. Many years later my skin still has chronic dryness and flaking which bleeds if scrubbed off. My liver on the other hand is functioning 100%, no long term effect. But I strongly suspect that the decades of depression, ahedonia or general struggle to ‘keep afloat’ are partly due to the medicine. Though growing up with a physically and emotionally abusive mother and unsupportive father surely was a large factor too.

  37. Clara says

    Thank you for this post, Tracy! And thank you, Stefan, for spreading the word.
    I am 31 and 8 years ago I started getting pimples. Year after year it was only getting worse. Acne, depression and living with all this made me very self conscious, I even skipped lectures because my face was so inlamed.
    I tried topical solutions, AB-s, pill. The few creams that seemed to work, did so only for a month or two.
    Pills made me depressed, antidepressants then worsened it.
    My derm mentioned Accutane would be the next step. Luckily, I had a colleague who shared her experience with this med (I had no idea she was on it) and then I decided not to try it. Now I know it was a good idea.
    So I just kept suffering until one day I had had enough. Then I just went off everything, AD-s, pill, acne solutions. And started doing research.
    I went off gluten, dairy – my cystic acne went too. Depression was not so horrible anymore, although still there. My overall health got so much better. I am using herbs and vitamins, exercising, thinking positively (it took some time to learn to do that).
    Then I started cheating with dairy and BAM!!, pimples were back, severe depression was back. I did some more research and tried niacin aka vitamin B3, and it works for me. It’s quite a big dosage you need to take, but for me totally worth it.
    I also recommend to read about opioid peptides.

    • says

      Thanks Clara! Your post has helped me. I’m going to check out niacin. I really don’t want to go down the Roaccutane route.

  38. eliza says

    I’ve had acne since I was 10 years old. I’m now 24. It comes and goes, and it’s mild now.
    I’ve cut out gluten and dairy and I’m vegetarian, and recently have found an all natural hormonal supplement that has helped.
    But I have an Accutane story that’s not too horrid.

    The first time I took it, I was 11. I’m still not sure if that was fully legal or not. I had very severe acne from a very young age. Because I was so young, they put me on a half dose. It didn’t work very well the first time around.

    2 years later, I began the treatment again. Full dose, for 6 months. It DID clear my skin, for about 2 years. Even when my acne began to reappear, it has never gone back to being so severe.

    While I was taking Accutane, the only noticeable side effect was dry lips and extreme moodiness. This could also have been contributed to puberty, but sometimes it was so extreme, it scared me.

    I know Accutane causes liver damage, and coincidentally liver damage can cause acne. I always wonder if this is my problem now.

    I’ve heard horror stories like this one before, and I can’t believe I actually took this drug (and so young too!).

    Yeah kids: stay away from it.

  39. Nick says

    I have a friend who started taking Accutane, then stopped taking it suddenly and then started again. When the doctor heard that, he stated that was the worst thing he could have ever done. The pain and damage caused from this powerful drug would effect him forever. Three years later, he is a shell of the person he used to be. He has all the symptoms described by thousands of people times a million percent and he is just done living like this. I am always rallying daily telling him to try something new, anything, I am always trying to stay upbeat and helpful. He finally told me he isn’t living a quality of life. He has not worked in years, dropped out of school and has removed every friend he has ever had, except for me. His condition is not only ruining his life but his sister who takes care of him. She and I only want him to get better but no matter how much we wish it, it seems like this drug is a nightmare and only brings pain and lose of life. I love my friend. I do not want anything to happen to him but I feel like I am not listening to him. I have read so many stories and they all sound the same. Is there anything that helps the damage caused? He has lost close to 60 pounds and can’t eat anymore. He has tried everything even the small bowl of rice he just consumed is causing him so much pain. Please someone tell me what to do, I am at a loss!

  40. Elisha says

    Oh Accutane!! How this drug has change my life! First I am very happy for the people who have had great results and are happy and healthy. I think it is only fair to warn people of the ugly truth that can sometimes come from this drug. My doctor put me on this medication for three months. I finished it about 6 months ago. Towards the end of my treatment I began to feel strange, within a week after being off of it I suffered a complete mental and emotional breakdown. I suffered from terrible thoughts of harming myself and mutilating my body. I was paranoid and anxious. I also had a depression like no other. I was hospitalized for ten days where I learned that this was not the first case of this happening. Many people have suffered from these side effects. This was no walk in the park I was completely insane and scared to death!!!! I was put on two types on anti depressants one type of anti phycotic and one kind of anti anxiety medication. I have never in my life had a history of mental illness nor has any one in my entire family.Things are getting better now through family and friends I have found a lot of support. I also meditate everyday! I am slowly weening off my medications and starting to become stable. I am not putting this out there to scar people, these side effects are rare but can be very real! I was not warned that something so dramatic could happen to me. I would never want another human being to go through what I have gone through. For anyone reading this and thinking of taking accutane please be careful and know that there canbe life altering side effects even suicide. For anyone suffering now from any of these side effects please do not give up. It does get better over time i am living proof keep on fighting.
    All the best love and light.

  41. Audrey Chilton says

    My son too was on Accutane, he now is in renal failure, and is waiting for a kidney transplant. We think it may be from the Accutane. Found out he had high blood pressure, which led to his kidney disease.

  42. Zandre says

    Hi Everybody
    I have read about your experiences with Oratane/Accutane. I was prescribed to my daughter by a dermatologist. Because she had bad acre he prescribed 2 pills a day. This is where the problems started. Within a few weeks shortness of breath started to developed. After two months we went back to the dermatologist. He prescribed 3 pills a day. The shortness of breath persisted and she started to develop a pain in her back. Two weeks ago we went back to the dermatologist and after discussion about the shortness of breath he took her off Oratane. The pain in her back persisted and we went to our house docter who send her for an lung x-ray. She now has a pulmonary edema. Is there anybody else who had such an experience? Of cause nobody thinks it is due to the use of Oratane but it is very disturbing that her symptoms started after a higher dose of Oratane!

    • Eric Turk says

      Hi!

      I’m not sure what you mean when you say 2 or 3 pills. I’ve had different dosages in different pills. I’ve been prescribed 1 40mg per day. The dermatologist will increase the dose, if they deem necessary. You must get your blood tested at a blood lab before your prescription can be filled. If your blood work reads that you’re liver is suffering, you cannot continue!

      And there are many factors that play into this. It may be that Accutane has caused the edema, however it may have been provoked. It is advised that you do not workout whatsoever because, at a molecular level, bodily repair becomes difficult, ex. cuts and scrapes take longer to repair. This is just part of the Accutane/Oratane. You also experience a lot of dehydration. Does your wife prefer to workout a lot? I would never advise intensive workouts while on Accutane, just because when you do workout, your muscles degrade, and they rebuild stronger. When the rebuilding process is hindered/inhibited, it can cause complications.
      Does she prefer to exercise?

  43. Hassan says

    Hi Guys
    in the pasat i have problem with ansia cause i take a pre workout…
    well now i want this pharm and i don’t know what i do ???

  44. Maffew says

    I think there needs to be a distinction between the effects of roaccutane and that of malpractice. I took roaccutane for close to 8 months under the guidance of an absolutely stellar dermatologist. He didn’t prescribe crazy dosages, nor go at it like he was trying to kill a fly with a hammer. He’d had decades of experience treating patients with the drug and his method was to begin at 10mg every second day for 6 weeks, before gradually raising that to every day, and after 3 months I was again titrated up to 20mg and another 2 months was raised to 30mg every second day alternating with 20mg on other days, but only so long as I could handle it. I haven’t suffered any lasting side effects since, and that was 5 years ago. In fact, given that my back is covered in scarring from cystic acne, which have thankfully faded and that the cysts were extending to my face, I have no doubt that if I hadn’t taken it I would have allowed my skin to be horribly disfigured. I honestly wish I had been able to take it sooner. Just like the right amount of paracetamol (acetaminophen/tylenol), will kill pain without causing harm, but too much will destroy your liver, roaccutane is a drug that I believe requires a sensible dermatologist who won’t overprescribe you a dosage that could increase negative effects. Even with a lower dosage that was titrated, whilst it took 6 months for my skin to completely clear, I have never had any form of acne over the 5 years since. The key here, is to be careful over who you trust, and make sure the dermatologist really knows what he’s doing before you follow what he says. Doctors make mistakes like anyone else, and whilst they spend years at medical schools and become qualified, I’ve found that some qualified doctors really just aren’t good at what they do.

  45. Dr ruekle says

    Hello I have just stumbled across this site. As a dermotolgist of 40 years I found it very disturbing at the points being made without any medical knowledge! A quick overview, I have been prescribing accutane for years now and have taken the drug SEVERAL times throughout my lifetime as have my children, nieces and nephews. Now let’s put some facts straight accutane in the treatment for acne is absolutely not a chemotherapy drug!!!! The chemcical Isotretinoin is in the drug class known as retninoid which basically means it is a synthetic form of vitamin A. Now what makes Isotretinoin a chemotherapy drug is the dosage. When admistered between 1 – 120 mg Isotretinoin is a large dosage of vitamin A. 300 mg onwards is considered chemotherapy. Afterall you wouldn’t class the vitamin A in your apple chemo would you? Or the vitamin A in your multivitamin supplement?

    There are dangers with all drugs and Accutane is no exception. You can get irreversible liver damage from something as common as paracetamol. You can get a lot of the side effects stephan mentions from again something as common as asprin. There is no scientific evidence that concludes that Accutane causes; depression, IBS, chrones or hypothyroidism. There have been 4000 reports of depression whilst taken Accutane, this is in the FDA, freedom of information act in which anyone can get a hold of for free. 4000 reports out of 13,000,000 patients. Now if you ask me that is so low that those 4000 people would have depression anyway either due to there acne or other reasons. There is so much negative press about Accutane and it just isn’t fair. Dr james del rosso a leading dermatologist in the world, has studied accutane for years and is totally behind its saftey. Isotretinoin like I said is in a group of medicines called retinoids, now there are many more oral retinoids and you never hear about them? That is because they are prescribed a lot less often so people just pick on the most commonly perscibed one.

    A lab test done in rats showes that after 2 years of chronic vitamin a toxicity they have hair loss, fatigue, and joint issue and after 2 weeks of coming off the drug all of there side effects go, even the unhealthiest ones. Saying accutane should banned is obsurd. There are thousands of reports or liver failure, death, brain damage from taking commen painkillers, so shall we ban them? So nextime your have an operation you can feel everything. Or the next time the dentist pulls your tooth out your are in agony for weeks. I get no extra money from persribing accutane. And do not perscibe dangerous drugs to my patients! I was part of a study back in 90s where we checked the saftey of Accutane. After 2 years of tireless study’s and work with leading derms we concluded that actually accutane is safer than most anti acne antibiotics but due to its imminent yet mild side effect like dry skin and lips it still should be a last resort. Another point a lot of drugs can cause hairl loss again accutane is no exception, accutane does not directly effect be hair follicle therefore your hair should grow back and if it doesn’t i shall but it bluntly – YOU’RE UNHEALHTY. Like some man said in another comment keep obesesing over the drug is so bad. It’s a case of mind of matter. Life goes on. Enjoy it while it lasts.

  46. Dr ruekle says

    P.s sorry for the bad spelling & punctuction. It’s not most doctors strong points plus with it being 3 am doesn’t help (I am part of a study in Boston) we are studying the saftey of acitretin!! A oral retinoid very similar to Isotretinoin. There is one big difference though. Isotretinoin has 55,456 adverse events reported in comparison to the 460 of acitretin (this is incredibly low) – tetracycline an antibiotic for acne has 2000 adverse reports!!! Makes me laugh really! Just shows the influence media has over the world. And when it’s to do with health it allows hypochondriacs to thrive. I have all the advers events associated with Isotretinoin reported by patients in front of me now and check this there are things like ‘turned gay’ ‘failure to thrive’ ‘constipation’ ‘ear wax over production’ ‘genital warts’ I mean have you heard this rubbish. I suggest everyone just lives there life to the full. There have been Many famous people who have taken accutane. Infact oscar winning matthew mcconuaghey took it as a freshman. He now is considered the best actor in the world and is a huge hollywood hotshot! Didn’t hinder his life did it. De ruekle

  47. Heather Roberts says

    Have just read Dr Reukle’s posts. A group of 14 parents of youngsters who took their own lives whilst on, or after taking this drug, had an interesting meeting on 25.4.14 with four of the directors of Roche, who marketed RoAccutane, and when asked, their Medical Director said that it most definitely WAS a chemotherapy drug, but when it was seen how effective it was on acne, they only used it for that. So i must contradict Dr Reukle on this.
    From all the reports in the media and in these posts, its obvious that for some people, this drug is helpful, for others, its a life sentence. And no one knows why.
    Severe cystic acne is a terrible affliction, i know, i had it, and it made me not want to socialise, all through my teenage years. RoAccutane did not exist then, but had it been available, i would have given anything in the world to get my hands on it, so i totally understand the feelings of anyone with bad acne, it makes you feel so unattractive and miserable. When you are 16 you don’t even think about mental illness or dying. You want to be acne-free and for the pain, mental and physical, to go.
    If it were possible to patent a sardine, i think Omega-3 fish oil would now be being swallowed on prescription by acne sufferers, and this would not only help to regulate their hormone systems and their moods, it would in many cases get their skin and system working properly. Keeping their dairy (especially milk fats) content down, has been shown to help greatly too. A ‘Stone Age’ diet helps too. (But there is no pharma money is promoting this kind of thing)
    Our son, a wonderful guy, researched loads of ways of helping acne, including having Blue Light and Laser treatment from Dr Tony Chu in London in 2011, all of which helped enormously. But sad to say, almost from the first few weeks of his taking RoAccutane in 2001, he didn’t know all this nutritional stuff and when he raised it with the dermatologist he saw, she thought it was nonsense. When he was 21 he got RoAccutane. OK, yes, he’d always been fairly body dysmorphic about his acne, aren’t we all if we have bad acne, but taking the drug he felt was going to sort all that and make his acne go away. It did, but he found his brain didn’t work the same anymore, he was shaking with fear, tears ran down his face for no reason, and suicidal thoughts invaded his mind and just would not go away, they went round and round in a loop like OCD. He asked to go into hospital as he felt he might even have to give in to the weird thoughts and kill himself. The psychiatrist in 2001 rubbished any suggestion that we needed to have concerns about RoAccutane. He just branded us as fussy parents. Over the ensuing 11 years, our son continually battled this feeling that his brain would not work, but he kept going, built a very successful web design business, and became known for his beautiful plant images which were sold all over the world. But he felt ill for the whole of those 11 years, and he was totally misunderstood by all the doctors who treated him cos none of them seemed to want to link RoAccutane with his symptoms – which, it turns out, are the same symptoms which many others, who have died, had. No one would listen to us.
    Very sadly, after being treated in an appallingly confrontational manner by a particular psychiatrist, even though once again we had tried to show that our son was struggling with BDD and had been treated with RoAccutane several times over the 11 years, he was made to feel that his suicidal feelings were all his own fault, and that basically, he should ‘get a life’. The pains behind his eyes and in his head, voids in his thinking, and endless suicidal thoughts, were so terrible, that he told us he couldn’t go on, and he a month or two later, he died. Roche insist that there is ‘no proven causal link with suicide’ of their drug. However, thanks to the efforts of many bereaved parents and many MPs, there is a new Government scientific investigation going on now to try to get to the bottom of this. I accept that the jury is out on whether this drug is lethal in some cases or not. but what I cannot forgive, is the attitude of the medical profession, who MUST by now be aware of the controversy over this drug, and yet do not afford the patient the dignity of even allowing for the fact that someone manifesting suicidal convictions but who has been taking the drug, could actually be brain damaged and not classically mentally ill. Our son died feeling that he was a loser and a time waster. One of his last emails states that he knew he had issues about the appearance of his acne, but he never thought of himself as ‘a bad person’. This whole business is a BAD business. There must be research, to get a good safe dose or a totally new drug, and nutrition needs to be understood and promoted, even it makes no profit for anyone. If we consider ourselves civilised, we MUST do it for the people who suffer acne and should not have to in this day and age. And there are people out there, like our son, who are (was) finding ways to cure it safely, and to lessen the bad effects which may have been caused by RoAccutane (Isotretinoin) ‘in some people’. So if you are one of those desperate folk, hold on tight, do not give in to the suicidal thoughts, because things are moving now and politicians are taking this very seriously. People are not going to accept the justification of having to treat one terrible affliction with something possibly even worse. Our son left a letter and in it he said ‘please help others mum and dad’. He was a wonderful guy in every way. So we must.

    • says

      Hi Heather, I’m terribly sorry for the loss of your son. It’s stories like yours that make it so important that people realize how potentially serious this drug can be. So thank you so much for sharing that!

  48. Heather Roberts says

    Thanks so much Tracy – we miss him dreadfully, he was truly a wonderful guy, kind, talented, and cared wholeheartedly for others. His dad and i will try to do all we can to carry out his wishes and to help other sufferers. At least we have got the British Government taking us seriously now. But there is so much more to do, especially trying to get the medical profession to understand what is happening to the people who suffer such terrible symptoms. His name was Olly, and he wanted us to found an OLLY FRIENDSHIP FOUNDATION so that anxiety sufferers and their families would be able to bond together in strength and know that they were not alone.

  49. says

    Roaccutane is the same thing as Accutane you are all right, but the reason why it’s now called Roacctunae is because the guy who invented this drug is called Roche or was his name, therefor they changed the name to Roaccutane…. Accutane is not a bad product it depends if you use it exactly as the dr had prescribed or not… The only reason why I can think these people got these chronic diseases is because they probably didn’t always eat before they drank it or they could’ve taken double dosis when maybe they skipped a dose, and remember this is a kind of an antibiotic which is dangerous and unfortunately if you don’t take the medicine exactly as the dr had prescribed you might end up having these chronic symptoms and the dr should’ve told you too incase you get these symptoms you consult a dr and they might lighten the dose that you were prescribed with or they could discotinue the dose and because these people didn’t care basically now they have lasting side affects…. That is why I went on the internet to do research as much as I possibly can about this drug so that I can know exactly what to do when I start getting funny side affects which seem real to me, never be too hasty to get rid of acne, currently I am but I am not that hasty that when I get weird symptoms of the drug end not caring and not go see a dr and either stop the medicine or just lighten my dose… It could also be that these people had been put on a dose that maybe was too high for their them to use, because they should give a dose accordingly to how much you weigh, and the stronger the dose the worse the side affects…. It depends all on you if you really use it on how the dr had said you should or if you followed your own advice at times, or if you were given higher dosage than what you were supposed to get….

  50. says

    Thanks so much for this really informative forum.
    I have been given a week to research Roaccutane before I am prescribed it next week. I have had severe acne for the last 4 months. Though I have been having breakouts for the past 2 years. Bear in mind i’m in my 40’s and have suffered breast cancer. I have tried antibiotics, eating healthy, quitting alcohol etc. still, the acne is persistent. Having read all these posts frankly I am quite apprehensive as to if it’s the right drug for me. There are great results and there are truly heartbreaking sad stories. I’m not sure what to do. I do believe however that our diet plays a huge role in this acne issue. I’m on 100% healthy eating this week. Now I really pray it clears up so I don’t have to take Roaccutane. #scared #shaking #confused……HELP!

  51. Heather Roberts says

    Sylvie, I’m so sorry you are (naturally) feeling so confused and worried. I think gradually the scientific truth will come out about this drug, but writing just as an ordinary person right now, observing what seems to be happening, it does seem to me that hormones play a big part in this. If you use Vitamin B6 and omega-3 oils, and just keep a kind of Investigation Diary with your results, monitoring the acne and what seems to make a difference, you may well find the right answer for you. Also try cutting out dairy products cos they give hormones to cows and if your own hormones are out of balance, that might make you more sensitive and lead to acne too.
    Some of us have more sensitive systems than others, and cannot tolerate synthetic drugs. I know I couldn’t tolerate any form of hormone pills (like birth control etc) and neither could i tolerate steroids. I wonder if our son, (who so tragically died having had so many of the symptoms listed on this forum), was also unable to hormonally tolerate what this drug did to him. There is so much that pharmaceutical science is, as far as I know, not spending time and money looking at. And there is so much complacency and lack of listening to anecdotal evidence from patients amongst doctors, I am sad to say. One excellent doctor we know however has always said, ‘give the body the right ingredients and it will heal itself’. It may be that you are going to have to be a detective and keep a record as you try different things till you find what your own system is happy with, and then the acne will go. Having read what you wrote, I would put a lot of emphasis on hormones, as you mention getting over breast cancer. But this is just my opinion. Healthy eating, lots of oily fish, and relaxing and keeping optimistic, surely can do nothing but good.

  52. Hailey says

    I posted a while back about the beginning of my experience with accutane. I was diagnosed with pernicious anemia ( I had less than 1/8 of the amount of b12 in my body that a normal person did). That was at 3 months into my accutane course and I was going to stop but all of the doctors assured me that as soon as my b12 was up everything would be okay. I continued to take it and as I was about to finish out my course I started getting headaches that made me feel like my eyes were going to pop out and my entire field of vision was flipping upside down. They sent me in for an MRI and found that I had 7 lesions in the white matter of my brain that had formed in recent months. Basically parts of my brain were shutting themselves off from blood flow and dying which is where the numbness they thought was coming from lack of b12 was really coming from. Several months and several specialists later I finally got a real diagnosis. I now have a very uncommon disorder called pseudotumor cerebri. It means that my spinal fluid builds up and puts too much pressure on my brain and optical nerves. It has also caused the nerve signals from my eyes to process wrong and my neurons to fire at random as well as a chemical imbalance to try to compensate for all the pressure. My current specialist says he sees this a lot with previous accutane patients. As a result of all this i will have to take medication and receive routine spinal taps to drain off the extra fluid and relieve the pressure from my brain for most of my life. I just wanted to share the rest of my story now that it has been almost a year. As I said last time, I cant speak for every dermatologist or doctor but mine DID NOT inform me well enough of the potential side effects. I do not recommend taking this drug without doing A TON of research into how it can effect you. I honestly thought I had done enough research but I had no idea things like this could happen.

  53. Heather Roberts says

    Hailey, this must be absolutely dreadful for you, and our hearts go out to you, having to cope with what you describe. It is however wonderful that you have explained this, as it makes sense of the pains behind the eyes and pressure in the head that our son Olly experienced. We know he was low on B12 after starting RoAccutane and we tried to get injections of it for him at once point early in the months he first took it but were not taken seriously about this by our NHS GP and told we would have to do them ourselves, which Olly did not feel happy with. You are so right about there needing to be masses more research into how this drug can affect you. If only all those on RoAccutane could get MRI scans, it would throw much more light on what was going on. Our son was begging to have one just before he died, as the eye symptoms he had were just as you describe them. How amazing that your current specialist says he sees this a lot with previous Accutane patients. Has he reported this back to Roche using the yellow card system? If not, would he do so? Also maybe to the MHRA who are looking into effects of this drug at this very moment.

    • Hailey says

      Heather, I didn’t RoAuccutane technically I took Isotretinoin. I’m currently going through the process of reporting all this to the FDA and really anyone else who will listen. I know that some agencies won’t allow me to submit a complaint because they only deal with RoAcutanne or only deal in the UK. If you would post the links to that you are talking about I would be more than happy to work with my doctor to see if he would. I’m also curious Heather, did your son have any vision problems with his head pain? There were several times that I was driving and my vision flipped upside down. And then it got to the point where my vision was flipping upside down every night and it felt like someone was taking an ice pick to my head. It was horrible. The pain is debilitating. At my first doctors appointment for this (with a doctor I am no longer seeing) I used the word “debilitating” and the woman literally rolled her eyes at me. I can only imagine going for 11 years dealing with this pain and not having any answers and being treated this way. I don’t know what I would have done. Honestly I probably would have taken my own life because this is really no way to live. This drug changes the way you think though so I’m not saying that’s the right answer at all. I just really understand that place of darkness and pain. I am so sorry for what your family went through. It is a long road ahead for all of us that are recovering from the long term damage of accutane. Sometimes it’s hard to believe that a choice a made to get ride of something as trivial as acne at age 17 could have literally ruined my life.

  54. Heather Roberts says

    Hailey, our son complained of the terrible headache for several weeks before he died. It had been building up over time but in the last weeks, he said it was so bad he said he also had voids when he could not think or see clearly but he didn’t say he had an actual ‘inverted’ image. He also used to get red flashes behind his eyes but that was not at the end, it was a while before the pain became so excruciating. He held his head in his hands and said the pain was intolerable, especially in the area behind his eyes like a band across his nose and the eyes felt like they were being pushed out of his head. Despite endlessly telling the doctors this, no one would take him seriously. (When he begged for a scan – which he was happy to pay for,- he was told that it would show nothing as it was probably pain due to anxiety!) In his farewell note he tells us of the voids in his mind which seemed to be so terrifying, he said it was as if all his memory closed down and he couldn’t think any more or relate to where he was. He was logical and lucid however to the last, but frustrated, not being able to be understood about the pain. He said he knew his brain was not working right and kept saying ‘you will have to let me go, I am really ill Mum and Dad and no one seems to realise.’ We tried everything to get the medics and social workers to listen, knowing that he really would end his life if we didn’t get help.
    You are so right about taking a drug for acne and ending up like so many do on Isotretinoin. I have to say that yes, he hated the acne, but his attitude, as a biochemist, was to find an answer to the problem, never to give up on life. He had a good business, a lovely girlfriend, and everything to live for. Not till it became too painful to go on with and having a psychiatrist who did not take his pain seriously and thought he was attention-seeking and not making effort! He was such a dear and wonderful son, so talented and so kind, to the very last. Life without him is really empty, but we must go on and help others, as he himself wanted to do. Thank you for your kind and thoughtful words, they mean so much. We’ve alerted our group to your post and will get your words to the MHRA (like your FDA) somehow. Keep posting and in touch if you are able to.

  55. says

    I wish I never took Roaccutane. (accutane was called “Roaccutane” in Australia). I just wanted to add my voice. I’m lucky I didn’t have any of the neurological side effects that others did, but it caused my moderate acne to become very severe, leaving me with permanent scarring which I wouldn’t have otherwise had. I had too much trust in the dermatologist, who said this was normal and it would clear up soon, etc. well, eventually it did clear up, but now my skin was red with scarring. A couple of months after stopping Roaccutane, the acne returned, just as it was before I started taking it. Dermatologist recommended Roaccutane. How stupid is he?!! No way. I later discovered 15% glycolic acid, which actually helped clear acne and scarring.

  56. B1 says

    I took Accutane at age 16-17 in 1998/99. I was monitored with weekly exams and blood tests. I never missed a dose, and I always followed instructions pertaining to eating and diet. I ate NO sugars and drank about a gallon of water per day. I suffered no unusual side effects during treatment and like many others, I wanted to die before I took this drug. Never socialized and hated school. At the time I felt this drug saved my life. Now fast forward 15 years later I have learned to live with IBD. Was my condition caused by Accutane? I may never know but for someone who NEVER got sick and had a very strong immune system prior to using Accutane, it seems a possibility. For what its worth I still have acne at age 32. It went away for a long time, but its back. Not nearly what it was, but enough to be embarrassing sometimes. Acne seems like the worst thing in the world when its bad but for most young people it clears up on its own. To this day I cant honestly decide if it was worth it or not but as I get older I think I prefer health over clear skin. Ironically after using Accutane, I have ended up with neither.

  57. megan says

    Hi Stephan

    I kid you not I have been through the exact same thing. Everything you have described I have been through too. Its kind of crazy for me cause to hear someone else who went through the same thing as me is crazy. Accutane is hell. HELL. After 3 years I can honestly say im almost back to normal. I was extremely suicidal and had to get help for it.. they tried to put me on medication but any medicine (even advil) scares me now and i refuse to take it. I can tell you to get help but thats just a bunch of bullshit. I dont trust these doctors anymore. It was not until I made a change inside of me that i finally found my peace of mind. You have to stop sitting around feeling bad about yourself cause its you that makes yourself go crazy. i refuse to let me look up anything on my computer when i was trying to get better ( i binged now) i made myself go crazy looking at all the cases and side effects… at one point i convinced myself i had a brain tumor. DONT WALLOW GET UP AND MAKE YOURSELF HAPPY! YOUR MIND CONTROLS EVERYTHING! Its hard believe me i know but what you have to do is move past it! BE STRONG! and i wish you all the luck!

  58. Lauren says

    Just wanted to put this out there- I had severe acne when I was 15, but my acne started probably when I was 13/14. Was prescribed accutane when I was 16 but only after two months I had to go off of it due to high liver enzymes reported from my blood tests. I was given a high dosage to start with which I think contributed to the raised levels. Anyway I still got pimples every now and then but nothing to the extent that I had before. I thought maybe I had just “grown out of it” but my acne has come back at age 21. Out of nowhere I started to get severe acne all along my jawline, chin, neck, and temples with occasional pimples in t-zone. Originally i thought it could be PCOS but blood test came back negative so I asked to give isotretinoin a try again. The first month my blood test came back perfect, but the second month liver enzymes were elevated again so doctor asked me to go off for two weeks and see if it would go down. The thing is the second month I was on it, i also took a liver support supplement along with isotretinoin. I completely stop the supplement as well for the two weeks and everything went back to normal. Now back on the course everything till looks good-but i asked my derm to be put on a lower dosage.

    I think putting too much of anything in the body is dangerous, overloading our system with prescriptions or supplements can have adverse effects. But acne as well can be just as damaging- not to mention all the scarring.

    So whatever you decide, keep in mind self-love. Don’t over do it. Diet for me definitely help (cutting dairy and gluten) but didn’t fix it. Acne patients are prone to inflammation in general, whether acne from inflammation is caused from digestion, hormones, food sensitivities, toxins etc. But we do have to be more cautious in how we treat our bodies as people with acne. Don’t take this as a negative, just view it as having to spend a little more love and attention to ourselves.

    Right now isotretinoin is helping me, and also helping my self-esteem. I am being careful and taking care of myself, which also involves doing whatever possible, in a healthy way, to get rid of my acne. I do not have to live with acne, neither should anyone else. Do what you need to, to live your life. I experienced so many negative experiences from acne in my teens that frustrates me, but I am trying to get over it and become a better person, which doesn’t involve acne. You can do the same, just be safe.

    Remember to fight for yourself, don’t give up.

    • Diana says

      This is a fascinating thread. A special thanks to the host of this site and to Stefan who so bravely put his story out there. I believe and understand every word of it.

      My story is unique in that I had LASIK surgery over a decade ago, an elective procedure where one must sign a waiver. Unfortunately, while I had excellent vision post-surgery, I landed with severe dry eye syndrome. It was so indescribably painful, debilitating, dehumanizing and flat out depressing, that I could barely function for two years. I saw many doctors about this hideous side-effect and my sudden onset of anxiety and depression.

      I was the 1% who had a bad outcome. I was the 1% you read about on the internet…that rare occurence of severe, burning dry eye that won’t go away. Does anybody want to take a guess at how doctors handle the 1%? They deny. They tell you there must be something else wrong in your life. Trust me, I heard it over and over.

      The beautiful ending here is that as horrific as those few years were, I had a tremendous amount of spousal support and enough self-love that I helped myself find ways to improve my level of comfort and get mentally healthy.

      I also found an online support group of people most who were exactly like me having had refractive surgery of some sort. I’ve met some very special people through that site. With years of effort, time, money, and holistic methods, I found manageable comfort. I went on to have two more children, a feat I never thought possible in those dark years post-LASIK.

      Curiously, and most relevant today were the scattered few people on my dry eye web site who had suffered the effects of a course of Accutane. Many were college students who were struggling just to get through school, barely able to manage the late nights, long hours, and demanding reading schedule.

      Today I’ve come full circle. I was permanently changed by my experience, not only in my eyes, but by way of my critical thinking and my understanding that magic bullets are not all they’re packaged to be.

      I’ve recently been highly pressured to use Accutane for my 16-year-old son who has been suffering a significant case of acne the last two years. It’s sad to see his handsome face this way, and I’m completely aware that as a teenager he could use all the help he can get. Growing up isn’t easy.

      But in the last few weeks I’ve sat with two doctors who applied a great deal of pressure on me about using Accutane on my son. They both had the raw nerve to pressure him in my presence, and while I was out of the room.

      Today I’ve been reading about those of you who had a bad experience with Accutane, the unlucky “1%” as I was. I know darned well there are so many tough cases that go unreported. I never went anywhere near my LASIK surgeon following those initial sad, desperate follow-up appointments post-surgery.

      Clearly my LASIK surgeon did not believe my pain, nor did he understand my anxiety. I could not bear his condescending approach, nor could I bear his words that I should be looking at other parts of my life while I sobbed about my pain.

      I’d bet my retirement I was NEVER reported to any medical entity as a bad outcome. He never knew how I suffered three months out, six months out…a year, two years…

      For those of you who suffer because you jumped right in, considered a drug or procedure to be low-risk, and signed the blasted waiver, please know there’s happiness to be found and life to be lived. And with this healing come the graces and the wisdom that come with experience.

      I reached into my database of wisdom today, and recognized clearly what was happening as the dermatologist condescendingly lectured me and my son on the ridiculous, exaggerated factoids about Accutane. He told us he had allowed Accutane for his own children…words almost verbatim as used by my LASIK surgeon prior to my surgery.

      In the end, I’m grateful that people come out safely on the other side of elective procedures and treatments. I would not wish my experience and discomfort on anyone.

      But, bad outcomes are a reality. And trust me, you do not want to be on the receiving end of a bad outcome, particularly when the people who tout these procedures and medications so readily are in total denial when confronted with the unfortunate 1%.

      This is one issue where I can pass along my wisdom to my children without requiring them to experience it themselves.

  59. Mary G C says

    Diane, could I communicate directly with your extreme dry eye syndrome? I was left with that extreme dry eye syndrome (past 25 years) from 3 months of Accutane use in 1987, and I have had the same medical community denial that you have had. I can be reached at mgctomd@yahoo.com

  60. Alysha says

    I’m only 14, and I took accutane cause I had a HUGE problem with my acne. My family would pick on me for it, create rude songs about it. Nothing worked. Even used two other much safer pills, and they never worked. Anyways.. I was on accutane for 2 1/2 months, a month ago. I HAD to take myself off. I was sooo sick. I had/have lots of nausea. Even till this day. Sometimes, at least more than 4 times a day, i feel like I’m going to have a heart attack. It may just be heart burn, I don’t know. Never had this before. As I said before.. I have nausea. Lots of it. I’m kind of worried and the section on the video confused me. Another thing I can say.. I regret taking this pill. My self concious took over and I thought the pill wouldn’t hurt me. I guessed wrong.. I don’t remember how it feels to have my body feel normal anymore /: since I stopped so early, I got all my acne back. Didn’t have one good thing to come from this pill, GRRR.

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