Isotretinoin ruined my life

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?

Poland

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

Google

What is your current age, height, weight?

27,180cm, 90kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

isotretinoin

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

60mg/day

What condition was being treated with the drug?

acne

For how long did you take the drug (weeks/months/years)?

9 months

How old were you, and WHEN (date) did you start the drug?

14

How old were you when you quit, and WHEN (date) did you quit?

14

How did you quit (cold turkey or taper off)?

cold turkey

How long into your usage did you notice the onset of side effects?

During first month

What side effects did you experience that have yet to resolve since discontinuation?

Depression, anxiety, depersonalisation, derealisation, brain fog, loss of cognitive function, loss of libido, loss of spontaneus erections

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Fluoxetine, Xanax, Sertraline, Moclobemide, Ketrel, Citalopram, Escitalopram, Duloxetine, Tianeptine, Trazodone, Coluracetam, Fasoracetam, PRL-8-53, phenylpiracetam, Modafinil, Phenibut, Baclofen, GBL, THC, RSO Oil, Cocaine, Amphetamine, Psilocybin, MDMA, Testosterone propionate, Testosterone Enanthate , Testosterone Cypionate, Winstrol, Methandienone, Cabergoline, Clomid, HCG, Anastrozole, BPC-157, NSI-189, Ipamorelin, PT-141, Selank, Semax, IGF1, GHRP-6, Ashwagandha, Tribulus Terrestris, Sodium Butyrate, Licorice Root, SJW, L-histidine, L-arginine, Ginseng, Nicotine Vaping,

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

Greetings to all members of the forum. I’m a long term lurker of this and most of other forums about side effects of accutane, propecia and antidepressants. Finally I decided to sign in and tell my story because I feel like I have nothing to loose. My life ended when I was just 14 years old and was prescribed isotretinoin to treat my acne. I have to admit it was quite serious and isotretinoin was the last resort treatment. Before I was treated with most of the oral antibiotics and creams. Nothing helped so my parents decided to put me on isotretinoin. I’m from Poland and in my country it was sold under the name Izotek.

I was diagnosed with retinoblastoma at the age of 4. It’s quite rare form of cancer among children, when tumors usually start to appear in the eyes and then spread to the brain and other organs. I was very lucky to experience spontaneous regression without any treatment. Before it doctors were giving me about 4 months of life. The cancer didn’t spread and I wasn’t treated in any way. The inactive tumor remains in my eye to this day. During this time I was under pharmacological coma many times during exams which of course may have affected my brain.

I wouldn’t say that I was an easy child. My parents were caring about me too much because of all cancer thing and like every child I was taking advantage of it. I was very intelligent and usually in the top best students in the class till the age of 13. I was developing quite normally, started masturbating at the age of 11 and it felt great. I could do it 10 times a day and every orgasm felt great. I felt intelligent and I felt like myself. I was interested in girls I liked to laugh and I was able to experience pleasure from every activity. I never suffered from depression but I experienced episodes of anxiety. But I guess fear is just a normal human feeling and everybody feels it sometimes.

I’m not sure what it means to feel human, because I didn’t experience it for a long time. When I started my treatment with isotretinoin at the age of 14 everything changed for me. Of course I felt low because of my acne. Children are cruel and I was bullied because of it all the time. But I still felt myself, I didn’t get depressed. I felt if I just can get rid of acne, I can do anything. I was very excited to start the treatment. At first it caused even more acne and I felt terrible. My whole body was aching, my lips were peeling, I started to get wounds all over my body that weren’t healing. I started to get depressed, I started to be anxious without a reason, I started to feel dumb, I started to isolate from any social interaction, I started to get angry without a reason. I remember this time when I suddenly felt disconnected from my life and I couldn’t recognize myself in the mirror. I experienced psychotic episodes and I couldn’t explain to my parents why I acted this way. They blamed it on puberty.

I finished my course of isotretinoin after 9 months and my acne cleared up. During this time I degraded in all grades and especially maths started to be impossible for me. I never had problems with maths before and always got the best grades. During isotretinoin I barely passed the class. It was the last year before high school.

To be honest I hardly remember the summer after this last class but I think that was the first summer I kissed the girl. And I felt nothing. No excitement, no urge, nothing. I didn’t know what to think about that at the time.

Summer passed and I started high school. That was a very strange time for me. I felt disconnected from reality, I felt anxious all the time, I couldn’t concentrate on anything. The whole word was behind the fog, but I was scared to leave my room and started isolate myself even from my own family. I wanted to stay behind closed doors all the time.

First year in high school was terrible. I was wearing makeup because I was embarrassed of my face that didn’t look like mine anymore. I experienced constant social anxiety, I was sweating all over my body, my face turned bright red, my hands were shaking and I just wanted to run far away from people. Every damn day at high school for 3 years.

During that time I barely passed from class to class, I had couple of girlfriends but had sex at the age of 18. Didn’t feel special at all and didn’t feel the connection that you suppose to feel to your partner. I felt like I’m from different planet, but still had some friends. But they told me I’m acting strange. A lot of people remembered me from before high school and told me I was a fucking genius and asked me what happened. I told them - I don’t know. Funniest thing I didn’t make a connection to isotretinoin for years. I didn’t know that my life was over before it even started. While everybody was making plans about what they gonna do after high school, I felt empty. I didn’t know who I am and what was happening to me. My future was empty for me. At some point after severe panic attack at the age of 18, I decided to meet a psychiatrist.

I told her about my panic attacks and depression. She said it’s nothing serious and prescribed me fluoxetine and xanax. Another big mistake in my life. Touching antidepressants is my second biggest regret in life. Before taking prozac I would say that I had some libido and my erections were quite good and I could even experience some pleasure from being with a woman. Antidepressants killed the small part of my humanity that remained after isotretinoin.

I became extremely numb and I just didn’t care about anything anymore. I went to the university. Tried to change meds, but they just made me worse. Dropped out of university. Got a job in my home town. Changed the meds again and experienced first suicidal thoughts at the age of 20. I really wanted to die. I couldn’t take living like this anymore. Checked myself to the mental hospital. After 3 weeks I was discharged and they recommended me a psychotherapy. After that I went to private psychiatrist and he prescribed me sertraline. That was the time when I felt most alive in my life. I felt like life was real, I cared about people and I felt in love. I experienced a couple of magic moments. Then my psychiatrist decided to take me of the med. The withdrawal symptoms started very fast. I felt like my whole world was collapsing and I started to be severely suicidal. I went to another doctor and he prescribed me moclobemide. I felt great. I felt so great that I decided to leave everything that I knew, my friends, my family, my beautiful girlfriend and move to England. I experienced my first manic episode. I felt awesome. I didn’t know then that it will end soon. I run out of moclobemide and entered total psychosis when I didn’t sleep for 2 months. I’m not sure what was going on with me back then. Was working at the small coffee shop at that time and barely living. Decided to see a psychiatrist again. I was prescribed citalopram and duloxetine. I started to sleep again. For a moment I felt somewhat normal. Then another big crash, coming back to moclobemide in hopes of feeling great again but it didn’t do anything except making me worse. I was severely suicidal and not able to work anymore.

I lived in England for almost two years. But it seems like it was a dream. Somehow during that time I finally made a connection to Accutane. Took me 9 years to realize that my life is over. Funny isn’t it? Maybe because when I was telling my parents that something was very wrong with me they were saying that it was all in my head. Maybe because all the doctors that I’ve met told me that it was just a depression? Maybe just a coincidence. I don’t know. I know that after reading countless stories of people with the same problems as me and no solutions I decided I need to die. I needed to die because I couldn’t live like this anymore. I called my parents on skype and told them that I don’t know what to do and I want to go back home. They bought me the plane tickets and I went back home to Poland.

After I came back I just lied in bed wishing I was dead. Attempted suicide twice and after second time I was in mental hospital again. This time they prescribed me antipsychotics. I treid to hung myslef in bathroom but the found me. After that I pretended that I’m ok just to get out of the hospital and finally finish my life uninterrupted.

I got out after a couple of weeks and decided to wean myself out of antipsychotics. It was hard but I did it and decided to lift weights everyday and try to eat healthy. I wanted to be in the best shape of my life. I decided to live. My parents decided that If i can’t work I should go to university again. I was training for this day everyday. Everyday I thought about killing myself but I kept on going. The university day started and then things started to be interesting. I was studying english and quickly became one of the best students on the year. All the girls were thinking that I’m so handsome and wanted to fuck me. I was on top of my game in pretending that I’m the best while inside I felt so small. And despite the fact that I felt impotent I still had sex with couple of girls and they felt satisfied while I felt nothing and I felt like my life is a one big lie.

I didn’t finish this another first year at the university. I felt like I can’t go on like this anymore. I can’t pretend to be somebody that I’m not. I was throwing myself there hoping that “fake it till you make it” will work. But it didn’t. During that time I’ve met a girl that made me feel like nobody else in the world. But I guess it just happens once in a lifetime. In my case it lasted one month. But the high from this relationship was better then the best cocaine and the comedown was severe.

After I dropped out of the university I tried different jobs, my parents didn’t want me to live with them and I fully understand them. I was a grown man and their financial situation was tough. I barely managed to survive doing shitty jobs as a bartender or washing dishes. I’ve met a woman.

She’s 7 years older than me and I can say with all certainty that she saved my life. If it wasn’t for her I would be dead many years ago. She cared for me, fed me, gave me a home when I couldn’t take care of myself and was totally broken. But after 3 years of living with me she is also burned out. And I also don’t blame her. I feel like I destroy everything and everybody around me.

After I met her, I decided that I would do anything just to be more functional human being. I’ve spent over 40 000$ on almost every treatment that you can imagine. The full list is above. I don’t know what else to write. Thank you to anybody who had time and patience to read the whole story. Good luck to you all.

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Dear halfthemaniusedtobe,

I am sorry this happened to you, that you have been suffering so heavily for so long and since a young age.

A warm welcome! You have come to the right place. The administrators of this website and the scientists that support our cause are convinced that Isotretinoin, Finasteride (Propecia, Proscar), all anti-androgens and in fact all endocrine disruptors can cause persistent side effects in predisposed humans. We all here are determined to investigate the cause of our condition with the hope to reverse it one day.

To do this, we need your help. May I kindly ask you to:

  • Complete the survey as we particularly need more Accutane/Isotretinoin victims. For the first time ever, we will systematically generate data with regard to the numerous side effects of this condition and its impact on quality of life. The survey will hopefully create awareness and leads for publications and research. And it only costs abount an hour of everyone’s time to complete it. See here for more details: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

  • Report your side effects to the authorities. This is an easy way to create awareness in the medical community and has lead to far more severe warnings on leaflets and handouts to medical professionals. With the current Information with regard to side effects on Propecia leaflets, there is no way I would have taken this poison. Too bad, these warnings weren’t there 15 years ago. See here for more Information on how to report your side effects: https://www.pfsfoundation.org/report-side-effects/

  • Provide 23andme data. This is a DNA test. We hope to compile as many samples as possible of DNA from PFS, PSSD, PAS etc. patients. This may generate leads with regard to our genetic predisposition that makes us suspectible to suffer from persistent side effects after the use of these meds. This would be of high scientific interest. It costs only about a 100 bucks to order the test. See here for more Information: Important Announcement: Two Community-Led Research Projects - Please Participate

If you have any questions or need any help with this, please let us know.

Unfortunately, as of today we cannot offer you any reliable treatment advice. But here you find fellow suffers that support each other both in terms of coping as well as supporting research in our condition. If you know any other sufferers from persistent side effects from These drugs, please ask them to join us in our quest. The more, the merrier, and the more likely will we be able to succeed.

Thank you, welcome and good luck!

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Hi Cooper,

I’m 27 now. I was 14 when they prescribed me isotretinoin. I was signaling to my parents that something was very wrong with me since my problems started. They ignored it and thought it was all puberty. I hated them for this for a long time, but now I know that it’s not their fault.

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It’s absolutely their fault. They failed to protect you.

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That’s what I thought for years and believe me I was full of hate. But at some point I realized that they are my parents, the care for me and never wanted any harm for me. I don’t blame them at all now. I blame the ignorant doctors and I blame drug manufacturers. They are the real evil.

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Welcome @halfthemaniusedtobe and thanks for sharing your story. I’m sorry to hear what you went through. I’m glad you’re able to let go of any bitterness you may have felt from others not understanding - this is such a hard thing for others to understand, and it’s not their fault. Those around someone suffering will often just want to do what makes sense to them to try and help, even if it isn’t necessarily the correct thing for the person involved.

I think a lot of people will relate to what you are saying, including myself. Like we see too often, it is such a shame to hear you were affected from such a young age. You’ve certainly tried a fair amount of therapies, too. @Northern_Star has made a great post and I second what he’s said. Within six hours your personal invite for the survey will be active - at which point you can use the survey button at the top of the forum (the graph symbol on the top right) to participate. It’s very much appreciated.

best

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I don’t think that’s good enough. It takes a lot planning and precaution to be a good parent, there are so many kids out there born with disabilities because their parents thought it would be a good idea to have kids with disabilities that run in the family.

You can’t just have good intentions, it’s not enough.

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@axolotl thank you for the kind words. It wasn’t easy to let go of all anger and bitterness but I guess I managed to do that. As for today my only goal is to live as “normal” life as I can. I will fill out the survey as soon as possible.

@lbv

I get where you coming from, because I used to think like you. I don’t anymore. Good luck to you.

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Welcome,

I’m sure you’re story will resonate with many on this forum! Your have come far and are very strong, and from such a young age!!! Keep up the fight you have to be over the worst. I have picked up that your acceptance and forgiveness has helped you enormously.

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Hello 2981,

Acceptance and forgiveness are the things that keep me alive today. Despite all the pain and disappointment I also still have hope for a better life and a will to live. Sometimes I feel quite good and sometimes I have days like today when I feel crushed by all of this. I’m not willing to give up and i hope there’s bright future for all of us. Take care!

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Hello Halfthemaniusedtobe,

Great user name by the way! Again we will resonate with that . I strive daily to develop your mind and will continue to do so. The hope of a brighter future is the holy grail and thats what also keeps me around.
Remain active on the site, were in it together, we’ve all lost many battles but collectively we will win the war.
A few of the guys in here have pulled me from the brink a few times.
Look after yourself :slight_smile:

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