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Roaccutane ruined my life

Posted , 19 users are following.

bellaseb
bellaseb

Whilst I realise the good that this drug does a lot of people (including myself as it cleared up my acne permanently), I feel like I should share the negative side effects of this drug, as the impact it has had on me has been really quite severe.

I am now 32 and was prescribed Roaccutane at the age of 18, just before leaving home and going to university. At the time I didn't realise it was the drugs, but they gradually caused me to withdraw from everyone and everything due to the effects it had on me both physically and therefore mentally.

To start with, it caused external skin issues such as dry skin, eczema, sweating and blushing - I used to be so confident but would suddenly blush when spoken to, for no apparent reason, which often caused me to literally run away in panic. This blushing issue became worse and worse, so I then grew extremely anxious that it would happen all the time, which of course it therefore did. I avoided people and became shy and introverted during what should have been the most exciting time of my life so far.

It also caused me to break out in a severe heat rash whenever I went out in the sun, to the extent that I began to hide myself away in my room with my curtains closed whilst everyone else went out to the fields to enjoy the day and socialise - I normally would have loved to be involved in this, as I was sociable and fun to be around, but instead I became lonely, miserable and probably "weird" in the eyes of everyone else.

After just one term of uni, I had stopped going to lectures and was thrown off my course. I decided to start a new course the following academic year (telling my parents that teaching wasn't for me, so I'd try a Business degree instead), but I found immediately that I still couldn't attend lectures and was therefore thrown off that course too. I was terrified to tell my parents, because I knew they'd be so disappointed, so I lied to them continually which caused my anxiety to soar. I spent most of my time in my room on my own. I would sleep all day long, go out every night with the few friends I had left, I was drinking a great deal, and I was so insecure and lacking an ounce of confidence that I became promiscuous.

I got myself into a load of debt with credit cards, since they were practically thrown at students back then, and basically wasted almost two years of my life on a downward spiral.

The physical symptoms worsened and continued for years after I'd stopped taking the meds, and I have absolutely no doubt at all that they triggered the bouts of severe depression that I consequently experienced (I've attempted suicide three times in the past) and also my seemingly never-ending anxiety. Until I took Roaccutane, I was a joyful, confident, fun, life-loving girl.

Although I thankfully no longer experience the blushing, the sweating, the heat rashes or the eczema, I still have to apply lip balm every half an hour otherwise my lips dry out completely - if I were ever to go anywhere without it, I'd probably have a meltdown!

Overall, the Roaccutane did what it was supposed to do - it cleared up my acne - but if I could turn the clock back and never take the stuff, I would. I seriously believe that if I hadn't taken it, my life would have turned out very, very differently - and most definitely for the better.

5 likes, 18 replies

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  • james23449
    james23449 bellaseb

    Posted

    Agree with the above.  40+ now and looking back I attribute most of my health issues to the "treatment" I got for acne (including antibiotics).  Anxiety - check.  Social phobia - check.  Depression - check.  Suicide attemts - check.  If I had my time again I would look first to diet (especially going gluten free, anti-inflammatory diet, etc) and not being so full on in my cleansing routines (I learnt that my skin was actually healthier the less I washed it.  Once per day at the most, preferably before bed.)  If you're reading this because you're thinking about taking roaccutane just don't do it.  The longer term costs are greater than you'd believe.  Peace.

     

  • manchesterUK
    manchesterUK bellaseb

    Posted

    Well I wrote out a long reply and it didn't post.

    I'm like you except I took accutane at 27. Now I have some facial flushing and my scars look worse, they are more visible than before.

    Again, I wrote out a detailed reply and the website messed up. I will post more details if you're interested.

    • james19791
      james19791 manchesterUK

      Posted

      Yup i took accutane at 15,I'm now 38. I still get some facial flushing from time to time. Bowel issues,constant tiredness hair loss. I don't think there's much this drug doesn't mess with! It needs to be banned outright even generic forms!

  • Olivia95x
    Olivia95x bellaseb

    Posted

    I am 21 and on my 6th week in this course after trying 5 different anti botics, 5 creams, 2 gels & 2 steroid creams along with different contraceptives (these can help woman with their hormones etc) and have been doing so since I was 15

    Can I ask as all of are now years off this medication, how much information were you given before you started the treatment?

    I've been reading up on this for 2 years now so I knew EVEY side effect possible before I started it as well as the dermatologist giving me about 40 booklets to read and forms to sign stating I understand everything

    Do you think you would have started the medication with a more positive mind set to avoid the side effects if you knew what they l were?

    I re apply lotions to my face 4-6 times a day and cannot live without 15% parafin jelly as Vaseline does not work and have the knees of a 60 year old

    I know it's easier said than done and still have a long road ahead although I feel already knowing all the side effect and possible to this I am determined for them to not beat me

  • Rouli12345
    Rouli12345 bellaseb

    Posted

    I took isotretinoin about 10 years ago for cystic acne,at the age of 16,for about 6 months as far as i remember...the only side effect that i have since then is excess hair all over my body...i have gone to doctors that say that this is vaused by isotretinoin...none of the dermatologists admit that...i had to start isotretinoin treatment again this year,took it only for 1,5 month(30 mg the first month,40 the half one) and then stopped it because dry eyes caused me bumpy cornea although i was using eye drops all the time...before that eye doctors were accusing dry eyes for the blurry vision...after all,i visited the hospital to check my cornea and all of the sudden they found out that i was having myopia(0,50)...i had perfect vision before and was checked 1,5 month before,my eyes were ok...so in about 1,5 month this awfull drug caused me myopia...after a lot of search i found some medical books mentioning drug induced myopia caused by isotretinoin and also that it is transient...i ve been off the drug for about 2,5 weeks but i see no change...of course dermatologist claims that he has never heard about this kind of side effect...so has anyone experienced this kind of side effects?sorry for any mistakes but english is not my native language..thank you!
  • aureloiz
    aureloiz bellaseb

    Posted

    I have the same problem, I use it for my 18-19yo and now I'm 27, I have the same things. It was working on me but now I'm paying the price. 

  • jenny_67286
    jenny_67286 bellaseb

    Posted

    Hi Bellaseb, I've just read your post regarding your experience with roaccutane and found it very interesting as my son has also experienced  very similar reactions to what you have over the years.

    I googled forums on Roaccutane after reading in a newspaper , The Mirror in fact issued on Wednesday 3rd of May regarding a young Man called Luke Reeves who  also had extreme side effects using this drug, unfortunately Luke is no longer alive and his mother is pretty sure that this drug had a part to play in the depression and other symptoms like yourself and my son have suffered.

    I can see that your post was a while ago but I'm new to this and I feel that people need to be very aware of these horrible symptoms that may occur and also need to know that it is long term skin problems that they may have to deal with as well as depression. 

    My son started taking the drug when he was 15 for his very bad acne and at first it seemed as if it was a miracle drug as his Acne started to clear within weeks,but this also brought on dry eyes but we thought that would clear after finishing the course.

    After he finished the course of about 6 months he started with exzema and psoriasis, extremely dry sore skin, depression, sweats, not sleeping, withdrawing from friends and family, he's now 22 and still struggles with depression and being his mum I worry but have no answers, on saying that I'd like to read more from other users of this drug as I feel after reading stories from other people who have taken this drug there has to be a link and more studies should be carried out.

    I hope my story has helped someone else out there, please feel free to email and let me know if there are groups that are willing to speak up about this.

    Thank you for taking your time to read my post.

    Kind regards, Mikes mum

     

    • lassie123
      lassie123 jenny_67286

      Posted

      I also wish to know what groups are dealing with this problem.  My son also took accutane.  He went to uni and the first year he struggled.  the second year he pretended to go.  He came back home and now sits in his bedroom all day so alone.  He says strange things and says someone is coming for him and it can't be stopped.  I even called in the mental health team and they say he is not a danger to himself or others. We have had a lot of help but only my son can help himself but he says there is nothing wrong with him.  How can a handsome sport loving, interested in girls become so isolated (2 years) become a prisoner in his own bedroom.  I want to help him before it is too late.  He refuses to take medication or see professionals.  All this for an acne drug - from a loving worried mum I NEED ADVICE BEFORE IT IS TOO LATE 

       

  • MP02003
    MP02003 bellaseb

    Posted

    I have had acne for around 5 years now and been put on various oral and topical antibiotics. Although some combinations have had small effects, nothing long term or brilliant.

    After speaking to my GP this morning after another failed antibiotics, he is going to refer me to a dermatoligist to be prescribed Roaccutane. He said it was a miracle drug with great success, but would dry out my skin and lips. He however failed to mentioned the countless severe side efects I've just read about.

    I have suffered from depression and anxiety in the past and have not been off anti-depressants for a year yet. Does anybody have any success stories without all the side effects, or is it really a drug I should not consider?

    • Cagiva
      Cagiva MP02003

      Posted

      Hi. The medication is very effective, however I would be careful. I'm 35 now and took this drug in my early 20's. I had battled acne from about 14 and by my early 20's was the worse it had ever been. I truly lost count of treatments and ointments doctor had prescribed me which had little success. Refered to dermatologist, and prescribed roaccutane which I took for 6 months. To be fair, it completely cleared up my acne. It was a cure, and apart from the odd pimple, I've never had it since ( I here this is not always the case though!). Now the downsides! Be prepared to be stuck with a needle every month for bloodtests. Side effects whilst taking it are what you expect, horribly dry skin, peeling and flaking. Dry eyes and overly sensitive sore chest, throat from dryness etc. What i didn't expect are the issues I faced after coming off it. About 6 months later, I did suffer pretty bad depression. Doctor said that it's uncertain this was caused by roaccutane. Really it is likely though as I'd never suffered with it before. This dissapeared after a year or so. Another issue I have faced, and again not possible to prove the drug is the cause, is fertility problems. My partner has a child from previous relationship, as did my ex, however I have never been able to have a child. From other people's experience, this is another possible complication from roaccutane. Ive also noticed other possible complications with night sweats, bowel and digestive problems. Of course none of these can be proven long term side effects of the drug and doctors are very neutral in there opinions of these long standing "possible" complications. Roaccutane is very effective, with a massive success rate. It was best choice I made to clear my acne, but I may have paid the price in other ways. I suppose it is the individuals choice to whether this price is worth paying to clear their acne.

    • bellaseb
      bellaseb Cagiva

      Posted

      Cagiva, I completely agree with that - it's whether you consider the side- and after-effects worth it. After all, it cleared up my acne too, and I have lovely skin now, but it's a high price to pay.

    • JarlB
      JarlB MP02003

      Posted

      I was on Roaccutane for 1 year when I was 18 to clear up my Acn and it worked like a charm. My only side effects were dry skin, lips and insomnia. I had no depression during or after and had no side effect after ending treatment apart from dry lips. Sad to hear you lot had severe side effects to Roaccutane, but you lot cannot forget, these severe side effects  only effect a small percentage of users. Going online for answers is the worst idea because you will only ever find the people who have had issues with it. People who have taken roaccutane with very little side effect or issues have no reason to jump online and tell their story. Dont let the 5% ruin something that 95% have had positive results from using.
  • brandestricklan
    brandestricklan bellaseb

    Posted

    You're right, it's a high price to pay just to get rid of acne. Especially these days, when there are better alternatives to Roaccutane. The stories here are so heartbreaking and they remind me of whenever my Medicine professor lets us look back to the history of Medicine, especially the times when medical professionals were ill-informed and confused, accidentally killing patients who had better chances of survival if left untreated. I don't mean to sound insensitive, but those people did not suffer in vain. Because of them, modern medicine has improved and we have products that are better than Roaccutane. I'm graduating from medical school and want to look clean and neat for my first internship, so I've been using a new product called All Purpose Hydroquinone Cream to remove my acne scars. It works better than Obagi and Bio Oil, which I previously tried. It was recommended to me by my cousin's roommate. I used to have bad skin in high school and I liked to pick on my skin whenever I got stressed, making my scars worse than average acne scars. The APH cream makes it not much of a problem, though, because it really removes my scars. I've been using it for 2 weeks, and my scars are now beginning to fade. I hope it continues to work, so I'll have perfect skin by the time I become a doctor.

    As for preventing further acne, I think it's best to go the natural way. Eat nutritious foods, drink nutritious drinks, sleep well, take plenty of exercises, and be positive. Life is too precious to let Roaccutane destroy it.

  • JarlB
    JarlB bellaseb

    Posted

    I was on Roaccutane for 1 year when I was 18 to clear up my Acn and it worked like a charm. My only side effects were dry skin, lips and insomnia. I had no depression during or after and had no side effect after ending treatment apart from dry lips. Sad to hear you lot had severe side effects to Roaccutane, but you lot cannot forget, these severe side effects  only effect a small percentage of users. Going online for answers is the worst idea because you will only ever find the people who have had issues with it. People who have taken roaccutane with very little side effect or issues have no reason to jump online and tell their story. Dont let the 5% ruin something that 95% have had positive results from using.
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