Took isotretinoin 4-5 years ago, don´t know if it is related to my symptoms

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)?
Norway

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?)
Through a link on a Youtube video.

What is your current age, height, weight?
26. 194cm. 90kg.

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
100mg (5 á 20mg) pr day.

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?
21. Started late summer 2014.

How old were you when you quit, and WHEN (date) did you quit?
I turned 22 right before I quit the drug. I can´t remember the exact date.

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

How long into your usage did you notice the onset of side effects?
I can´t remember. I just remember very dry skin and red skin/facial flushing.

What side effects did you experience that have yet to resolve since discontinuation?
Mainly, chronic sinusitis, which came on 6 months after discontinuation. It is a constant pressure behind my eyes, nose, cheeks and forehead, day in and day out for 4 years. This has recently been getting a lot better though after some changes I have made the last 3 months.

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 have actually not linked this drug to my symptoms. I have not been part of any forum or discussed this with any doctor or anybody, because I didn´t think that it had something to do with it. It wasn´t on my mind, until very recently. (I struggle with thinking clearly, so it´s hard to put my thoughts into words and explain this.) I´ve been doing natural therapy on my own.

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)?
I don´t have that.

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.

I had extremely bad acne starting from age 18. Not much on my face though, which I have seen other people have. I had it mainly on my neck, shoulders, chest, upper arms, back.

As a side note I´ve also had pretty bad social anxiety from an early age, like 5 or 6 yo. Always been very stressed out. Nervous. So I have always thought my symptoms were psychological in nature (the acne being psychosomatic). I don´t think so anymore.

So I had extreme acne, and I didn´t really do anything about it for a long time, because I had so much anxiety. But after several months back in late February 2014 I finally went to the doctor and got antibiotics for 3 months. It did nothing. Then I tried a vegetarian diet for 8 weeks, which gave me acne even on my cheeks and forehead where I didn´t have any previously. So i quit that. And then a couple of months later I started the accutane treatment. Started out with 2 capsules of 20mg each, and then built pretty quickly up to 5 capsules a day.

My memory is not so sharp anymore, so it is difficult to describe the events that took place. But I at least remember having extremely dry skin after awhile, and some nosebleeds I think. I also remember my face becoming hot and flushing very easily.

The drug got rid of the acne, and left me with a lot of scars. But overall the scars were not too bad actually (the dermatologist prescribing me the drug agreed).

I also had horrible anxiety most of the time, during and after the treatment. 6 months after I ended the treatment I noticed a pressure in my sinus area in my head that came on during stress. This increased during the next several months until it became a chronic, constant head pressure day in and day out, accompanied by dizziness, blurry vision, inability to think clearly, lack of emotions, Parkinson like symptoms; like inability to walk in a straight line, rigid movements, involuntary head movements/tiny seizures, lifeless/dead look in my eyes where the whites below my eyes were showing constantly, unable to show emotion, feeling nothing, muscle weakness, muscle cramps, apathy, lack of energy, chronic fatigue, oversleeping (like 12 sometimes 14 hours), social anxiety, panic attacks, agoraphobia, mild depression, helplessness, some manic behaviour, mild-moderate psychosis, frustration, irritability, anger, aggressiveness, vomiting, feeling like my throat is getting tighter, my behaviour in public being “off” although not being able to recognise it at the time, toenail fungus, dry and brittle nails, dry skin, dry eyes, hyperpigmentation where the acne have been, bad memory, my life/situation not even feeling real, asocial/not wanting to socialize/isolating myself, hypersexual, extremely stressed out, pushing myself extremely hard (manic, self-harm)…

No doctor ever took me seriously. Said it´s all psychological, offering me medication I don´t want to take, like anti-anxiety and SSRI. I tried some Sobril (anti-anxiety), but it didn´t work on me.

Most of these symptoms I had for 4 years straight, but the last 3 months I have actually seen a 40-50% improvement in my symptoms. The sinusitis is around 50% better, the Parkinson like symptoms I described are as good as gone, I have more energy, more positive emotions, my eyes look better, my sleep is way better, I´ve calmed way down, not stressed anymore, not hypersexual anymore (which I used to self-medicate with masturbation and porn, but now my desire is actually more towards the real deal, like I want a real girl now. Porn feels so boring now, like I don´t actually want to look at it). My toenails are a lot better. And so on.

Even though I have improved, my symptoms are still bad enough to hinder me from living a normal life. And again, I don´t know if accutane did this, or contributed to this, but what I´m basically doing now is a Vitamin A elimination diet where I have as little Vitamin A in my diet as possible. Time will tell if this is the right thing to do. During those 4 years I have tried a lot of other different treatments, like Paleo, ketogenic diet, carnivore, cold thermogenesis, getting a lot of sunlight, avoiding EMF and blue light, social exposure therapy, meditation, nofap, mental training, Faster EFT… Nothing ever worked, and I suspect many of them made me worse. Anyway, I think I´ll make a journal or something.

2 Likes

Keto diet did not help with the anxiety?

It did actually help somewhat with the anxiety, but it also made me more emotionally numb and more apathetic. Overall I no longer think keto is healthy.

How is your Testosterone levels?

Dear Fire,

I realise you haven’t logged in since you signed up a week ago, but I hope you will return and read this.

Welcome to our forum! I am sorry that you have to be here, because it means you are suffering from persistent side effects. But you are not alone! As you can see when browsing the forum, we have many, many people here who can relate to your suffering and who have similar symptoms after taking Finasteride, Accutane or antidepressants.

The symptoms that describe after taking Accutane are very typical, so it’s likely that it was indeed the Accutane that caused them. Unfortunately, there is no proven treatment for this condition today, but on this forum we also have a dedicated team that is working to create more awareness of this condition and to initiate more research into the underlying cause that will, hopefully, one day lead to potential treatment options. For this we need everyone’s help here.

Please consider participating in our community projects, which are presented here: Important Announcement: Two Community-Led Research Projects - Please Participate

The Survey takes around one hour of your time and can be saved on every step if you want to go through it in multiple sittings. The results will be very helpful to present systematic data with regard to the numerous symptoms that people in our community suffer from. Please also see here for more help: Have you signed up to take the post drug syndrome survey? This topic is for you

The 23andme project will cost about a 100 bucks, depending on location, and will provide genome data that may help us to find genetic similarities between patients that may predispose us for this condition. Needless to say, this would be very helpful.

Please also consider to report your adverse effects to the authorities to make them aware of the risks these drugs pose to the public. Country links can be found here: https://www.who.int/medicines/areas/quality_safety/regulation_legislation/list_mra_websites_nov2012.pdf

If you want to help raise awareness on social media, please volunteer in this thread: Are you interested in sharing your story for our Youtube project?

Welcome, thank you and good luck!

I don´t know.

Thank you

Update 6 years later:

I’m currently in the psych ward. This is the second forced hospitalization in under a year. In total I’ve been here 5 months now.
All in all things have not worked out for me. My life has been in a downward spiral ever since accutane. But lately, since July 2025, some improvements have occured. I’ll quickly list them below. I will also mention what I still struggle with.

Improvements:

Walk better; more power/energy in each step, dont drag my feet anymore, much less of that castrated feeling/anxiety (more assertive I think it’s called), better coordination, better spatial awareness, better balance.

More energy in general, require less sleep it looks like.

Post Exertional Malaise seems to be gone. I can exercise, even hard. In the past I could only tolerate walking without crashing afterwards. I’ve been lifting weights now since July. But the drive to exercise comes and goes. The motivation is there, but the «energy»/ tension to go at it, is not consistent. Sometimes I’ll feel flat emotionally, other times I feel more androgenic/dopamine. I think I’ve been in the flow state a little bit during some of my workouts, or very close to it. This hasnt really happened in 8,5 years or so.

Less anxiety, less social anxiety. A little bit more drive to be social. Agoraphobia pretty much gone.

Brain fog is gone, been gone for maybe 5 years. Since 2020 maybe.

Symptoms:

Still pressure in head (sinus area), been permanent for pretty much 10 years now.

Feel like shit most of the time.
In pain often.

Sleep is worse. I average maybe 5,5 hours a night. Sometimes its more, but I have had many nights this summer with only 20min-2 hours. Can’t sleep in the daytime (not able to for more than 10min, don’t know why).

More rage/frustration. Hitting and kicking things. Sometimes destroying things. Hitting my bed or the couch with full force. Sometimes it helps, sometimes it doesnt, and when it doesnt the raging/frustration just continues unabated.
The positive thing is that the anhedonia I had for so long (until this summer), is very much improved.

Still a lifeless look in my eyes, but not as bad as 6 years ago.

My teeth are rotting. I’ve lost in total 3 teeth, usually while eating. I cannot eat without being carerul how I chew. Many of my teeth hurt, even while brushing I have to be careful (it can hurt).

My toenails are still brittle, white/yellow (pale) and deforrmed. The doctors says it’s not fungus.

Last fall (2024) I was forced antipsychotics by injection, and took pills after that for 9 months. First zyprexa which made me fatigued and feeling and looking more castrated than ever before (looked like a woman with beard). Then abifily which gave me really bad akathisa for 2-3 days (it was the abilify or the zyprexa withdrawal), and so now I know what that feels like (hell on earth). Then seroquel which made me even number and more anhedonic and made me sleep a lot, but I became somewhat more functional on that. I gained 15+ kg of fat also in this period.

In June I decided I’m not going to have it anymore. So I cold turkey’d the seroquel and got physically ill for a week (nausea/vomiting/flu) and pretty much didnt’t sleep for 2 weeks. And after that got sent to the psych ward again. This time I’ve been able to fend them off and have not been back on any pills/medications (not even vitamin d). The psychiatrists/doctors have not forced me injections yet, and time will tell if that happens again. But I’ve decided to go to war this time and resist it as much as i can. I also talk much more about chemical castration, PFS, isotretinoin etc. They still think I am delusional. I’ve been diagnosed paranoid schizophrenic.

So I’m not just in a biological prison (PAS/PFS), on top of that I’m also in a physical prison (the psych ward). And since I’ve tried to escape a handful of times, they wont let me outside unless under tight supervision (in a double fenced backyard), just for some fresh air.

So that’s a little update from me. These changes/symptomes are just what I can think of right now. I will add more later if I remember. Also, please ask me anything, and I’ll try to answer as best as I can.

I was at the dentist today. Had 1 tooth pulled. Going to pull atleast 1 more at the next appointment. Every tooth in my mouth has holes in it. They are basically hollow inside. The deterioration of my teeth and toenails are physical proof that something is systemically wrong with me, in my opinion. And I’ve tried to tell this to psychiatrists/doctors and nurses. But it’s basically like talking to a wall. Some have even laughed me in the face. Last time it happened was literally under a week ago.The nurses seem to be more open to this, but I don’t feel like it leads anywhere. They have no power. The doctors have most, if not all of it.

1 Like

Sorry to hear of your struggles mate, what is the reason for being forced into the psyche ward to begin with?

Psychosis.

Even if they believed you, they couldn’t do anything to help. We are fucked either way.

Something is very systemically wrong with pfs/pssd/pas cases

2 Likes

I do agree with you. And I don’t expect them to heal me. I never did.