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