Took Accutane at 22. My life has never been the same. I'd give everything to undo taking the first pill that doomed me

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)? USA

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?) Googled Accutane related side effects and the rabbit hole eventually led me here.

What is your current age, height, weight? 29, 5’8", ~150 lb

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 6 month course ramping from 20mg to 40mg. Towards the end I was alternating betwen 20mg and 40mg daily.

Started a second course for about 2 more months but stopped when I realized hair loss and other side effects were all caused by Accutane.

What condition was being treated with the drug? Acne

For how long did you take the drug (weeks/months/years)? ~8 months

How old were you, and WHEN (date) did you start the drug? 22

How old were you when you quit, and WHEN (date) did you quit? 23

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

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

On my very first day, I should have realized something was wrong. I had no morning erection my first day, which I recall because it was extremely rare for me to not have one. I also started working full time and smoking weed regularly around this time. I attributed things like fatigue, low libido and being unable to complete a thought all to those two things at first but I started noticing signs as early as the first month.

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

Brain fog, libido, losing train of thought and stumbling over words. Everyone I knew before accutane would describe me as witty and extremely funny. I lost this ability among other things by taking this poison.

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?

I’ve gone to doctors but was only recommended therapy besides some useless blood tests. I did force my PCP to allow me to see a urologist but he attributed my erection loss as being simply a mental thing after having some ED once, which is NOT true.

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.

Ever since high school I’ve had problems with acne. I tried nearly everything at the time but thankfully my parents vetoed the idea of accutane. I resented this so much at the time, but looking back, I’m so thankful that they at least gave me ~6 years to live my adolescence as a regular guy, chasing girls, finding love, and getting heartbroken.

I was still super cheerful, talkative, and extroverted when I entered the workforce and starting living my post-college life while also starting my first dose of accutane. I also started smoking weed on the regular so thought it was just a weed/work stress thing when I started noticing the side effects. I noticed a weaker erection and lack of morning wood on some mornings almost instantly. I noticed that I’d lose my train of thought about a month or two into my usage but I attributed that to my weed usage and stopped smoking regularly although my side effects continued to get worse.

It was only after my second cycle of accutane where I realized that all the weird side effects I was seeing was due to accutane. I started Googling more about side effects when I started having some hair loss. Only then I saw this forum and realized I had all the side effects people were having on the forum (albeit with a different drug).

I quit accutane cold turkey and like many others, got an instant rebound for a few weeks. My libido was fine again and the only thing that seemed to be affecting me a bit was a weaker erection. And then it all crashed. Zero libido, zero erections, and a brain fog that persisted nonstop.

It was only then that I realized I was a shadow of my former self. I was no longer the witty charming guy at a party, I could hardly eat without brain fog affecting my thinking. Dating was out of the question. I would go into work and blank out on the name of the guy who’s been sitting across from me for over a year like a senile 80 year old dementia patient. I would trip over words and stutter when public speaking had been my forte in high school and college.

I’ve been able to improve a bit with the ketogenic diet and a decent exercise routine but things are clearly not the same. I don’t have suicidal thoughts but sometimes do wish I could simply disappear without any recollection in the minds of others. I truly wish that I hadn’t been so vain and regret it dearly.

3 Likes

Sorry to hear Accutane landed you here too.

All too often, we don’t find out what caused us to live with these bizarre health effects until finding Accutane mentioned in discussions of PFS and PSSD. Sexual side effects still aren’t recognized in the US and dermatologists still aggressively fight the fact of the matter.

Please take the time to do the post-drug survey. Now that you’ve created a member-story, the survey should be made available to you after a little bit of activity on the site. There are people counting on having something to show the MHRA in the UK later this year to define what our post-Accutane symptoms entail. Let’s not let them down.

2 Likes

Will definitely do. Seeing other posts about how Accutane users are not doing enough to get their voice heard is what prompted me to finally make this member post in the first place.

Given that our side effects are literally 1:1 with PFS I’m truly hoping that whatever advancements the PFS folks make on their side can help our cause as well.

2 Likes

I know your feels brother, I also deeply regret taking the poison. Welcome to the forum.

1 Like

Thanks, brother. It truly sucks to suffer in silence but glad that this forum exists.