My acne ordeal and isotretinoin consequences

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)? Russia

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 search – postaccutane symptoms or smth like that

What is your current age, height, weight? 30, 179 cm, 77 kg

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? first time – 10-20 mg/day, last course 40-50 mg/day

What condition was being treated with the drug? acne vulgaris

For how long did you take the drug (weeks/months/years)? 3 courses over 5 years

How old were you, and WHEN (date) did you start the drug? 25

How old were you when you quit, and WHEN (date) did you quit? 30

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

How long into your usage did you notice the onset of side effects? 3 years overall, but shortly after increasing the dose

What side effects did you experience that have yet to resolve since discontinuation? low libido and associated sexual side effects

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
[X ] 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)
Increased sweating with somewhat resembling acetone odor

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I tried some supplements (5-HTP, L-tyrosine, Fish oil, multivitamins). There was some significant improvement that didn’t last long. So that could be unconnected.

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 have no pre-drug hormonal blood tests. The first time I decided to check my sexual hormones was when I faced the problems. Then I got checked after discontinuing the drug. Both times the tests were OK. Thyroid-stimulating hormone and T4 were also fine.

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.

Hello everyone,

My story seems quite typical for this community.
At the age of 14-15 I got acne. Despite it wasn’t that horrible how it could be sometimes, it was still pretty bad. And the worst part was that not only my face suffered from that, but the whole back as well. Recalling those days now I remember feeling like my skin gone batshit crazy. But the dermatologists kept telling me it wasn’t severe form and suggested various kinds of almost useless treatments. I mean, none of that had any significant persistent effect. The disease got worse around 16-17 but after 20 it got slightly better. I still was avoiding going to the beach and so on, but at least I didn’t feel like the Elephant man anymore. At some point I even noticed my back was looking almost normal. But these periods of remission didn’t last long and were probably affected by my very stressful university exams. Acne was coming back again and again.
Long story short, my dermatologist agreed to prescribe me Roaccutane(she was reluctant at first, but I was so morally exhausted that saw isotretinoin as my last hope). She suggested me to take the lowest possible dose and get monthly blood tests. I started with 10 mg/day and continued with 20 for more than a year, I guess. The treatment removed my acne. And although I was far from being satisfied with my skin condition, it greatly improved my emotional state and self-confidence. Moreover, I experienced only mild dry skin side effects and was completely unaware of possible damage.

But after discontinuation of the drug acne returned again. So I went on another course with probably a bit higher dose (like 30 mg/day, I don’t remember). This time I finally encountered some noticeable side effects (although I didn’t connect them with the drug at that point, as my blood tests were still fine, with some expected higher levels of bilirubin). I remember some joint pain of unknown origin(mostly legs, knees and feet), extreme sweating after some exercises like I just emerged from the water, sometimes with some acetone-like odor, extremely dry skin with allergic dermatitis. And I finally encountered some sexual dysfunction. As my libido was always pretty strong I immediately concluded that isotretinoin must be the culprit. But my doctor said it was impossible, and my blood and urine tests were fine. Fortunately, I recovered within a week and came to the idea it was indeed because of my emotional state of the time. Several months later this occured again and I again thought it must be ‘all in my head’. Besides, I recovered again pretty soon. If only I knew, that isotretinoin could possibly cause sexual side effects, I would’ve stopped taking it right in that moment. But instead I was told it’s impossible. That’s why after acne came back again I asked to try a full dose to finally finish it once and for all. And it appeared to be my grave mistake, no surprise.

When the dose exceeded 50 mg(I think 60 was my top, but I returned to 50 and switched to some generic which was supposed to be more mild), all of my side effects came back stronger than ever. And, worst of all, my libido became non-existent. It’s even hard to describe that condition to the people who luckily never experienced anything like that. At one point I even noticed that my genitals shrunk(I couldn’t belive it at first). Before that moment I didn’t even realised how significant was the role of the sex drive in my overall well-being (or could it be another emotional side effect?). I felt absolutely numb and emotionally blunt, like all the colors in the world became suddenly bleak. I experienced ED, genital numbness, but the worst for me was that I didn’t feel any excitement. I became just a shadow of my former self.

What I find interesting is one particular moment. After being shocked with what was happening to me I had stopped taking the drug for a couple of weeks before consulting with my dermatologist who persuaded me to continue. And at that time there was one day, just one day when my libido fully returned to me for no reason(I felt like I was 15 again). But afterwards it disappeared like it was a dream. I was told it would be over after the end of the course. And it was my only hope. 2020 was pretty shitty on its own, but for me it was almost like a year of darkness.

But guess what? After discontinuation of the drug the only thing that came back was acne again. Although my back is pretty clear now, and the face is more or less(less tbh) fine condition, now I have problems on my chest. Oh, and and like a cherry on the cake there is hair loss now.

It definitely sucks to have acne(even moderate) in my age, especially after all of these years of struggles, but I could live with that if not my persisting sexual dysfunction. It’s been almost a year after I stopped taking it. My condition has slightly improved since then. My emotional state is waaay better now, and I even experience some sexual desire. I recovered nocturnal and morning erections(although not 100%), but still experience some ED episodes or premature ejaculation. It even looks like there’s no clear pattern of problems, like they change each other a bit chaotically. I had significant recovery during summer, but it lasted only 2.5 weeks and disappeared.

I decided to come to this forum as I finally realized that I might never recover again. My previous episodes of recovery still give me some hope though.

Hi @Ultra, and welcome to the forum! I’m sorry that you’re going through this. When was your last dose of isotretinoin?

If you’ve had fluctuations in your symptoms, perhaps that’s a good sign. At least it gives hope that it’s not permanent.

I hope you’ll come back here from time to time and update us on how you’re doing.

Hi there! Thank you, I appreciate any support cause I never shared my story before.
My last course ended almost a year ago. Since then I took it only for two weeks in September (8 mg/day) hoping it wouldn’t affect me much. The only effect was my clear skin for a dozen days, it didn’t worsen the condition.
Now I’m waiting for some more supplements to be delivered. I’m going to report any positive changes here. Last time recovery came out of nowhere, I just got up from my bed and felt already better. But it disappeared almost as suddenly as appeared.

Hi Ultra,

Welcome to the forum brother. I also took Roaccutane around 6 years ago now (only one course of 20mg/day). I can relate to a lot of your symptoms and you can check out my story if you like. I’ve broken down a lot of things that have helped me throughout the years such as supplements (good/bad), diet, training etc. All I can say is, it DOES get better over time and I’ve made significant progress in my recovery. Symptoms do fluctuate and I’ve also had periods where I felt nearly back to a 100%. My only advice is to be mindful about the supplements you take, don’t blow all of your money on things that “might” have helped other people. Take slow steps and find what works for you.

Wish you all the best and let me know if you need someone to talk.

с уважением,

-Daytona

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Hello @Daytona,

Thanks for the support and your kind words!
I’ve read your story and found it strikingly similar to mine. Looks like, in a younger age an organism is even more vulnerable to these nasty sides. However, your resilience and optimistic approach are really inspiring. I’m going to check your topics concerning the possible treatment.
Hope you will soon have 100% stable full recovery.
Take care.

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My only treatment for now consists of taking some supplements (L-Tyrosine, Raw Maca, 5-HTP, Magnesium, Fish oil), setting circadian clock by recommendations of Dr Huberman and some intermittent fasting. Now it’s almost a year since discontinuation of isotretionin and roughly 2 years since I noticed the dark side of the sides. I managed to achieve some stable improvement in the mood, I feel more or less calm all the time now, have less running thoughts and also feel like my thinking ability got better in general. Although I still struggle with my concentration but it could be unrelated. I noticed that my libido is also getting back, and I even start to feel some desire and arousal. Nocturnal and morning erections returned on a regular basis. But the sexual dysfunction doesn’t go away and numbness doesn’t seem to improve either.
Sadly, it makes me doubt my body’s gonna recover on its own.

I feel mild improvements with morning erections, it almost looks normal now and happens regularly. Which is quite unexpected to me, cause I didn’t have proper sleep most of this week. I thought it would actually make the problem worse, but that didn’t happen.
Also, the dysfunction still persists, now it’s more like premature ejaculation plus low sensitivity and genital numbness. It’s quite weird combination tbh, which in my opinion is a good evidence to the signaling issues.
At first I was afraid I lost some receptors in the skin and now am doomed to feel slightly above zero sexual sensations. But I remembered that in the good old days when I used to be normal my morning wood usually felt numb almost to the same extent. So I came to conclusion it must be also attributed to some connection problems.

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Hey Ultra,

i have the exact same problems with you. Firstly i want to keep your attention to some points which is too similar and maybe different from your story. I believe these points will help us to understand what is the real problem in our body.

While i was using accutane i never experienced libido issues. But when i quit using it i had a raging and insane libido for 2 weeks nonstop like you said “i felt like 15 years old again”. At first i thought man it’s ok i am 22 it’s normal but after these 2 weeks… Everything has gone like an instant. I was not able to feel my genitals, think about anything sexual, feel anything about what used to bring joy to me, i was completely shut down. I literally couldn’t get an erection whatever i did at these times.

After 1,5 years (until right now) from this “crash” i somehow regained the ability of getting aroused from females. I sometimes get sexual thoughts and my libido comes and says hello to me but this is too rare and is too weak for comparing with my old self. Right now i can say my ED problem is on a way better state but my libido is non-existent. If my libido and “animal instincts” will have come back in future i don’t think i would get a problem with erections.

So; what i am trying to say is, i believe these problems are not related to some genital tissue damage or venous leakage or some other potential problems about genital organs. This is all about our brain chemistry or something it’s all in brain. If it was a problem about genital organs, then we would still have our raging libido but we just would have ED problems. But that’s not the case. I no longer get excited from any sexual material. My brain do not even getting aroused from these things anymore like it used to do.

I went to urologists, gastroenterologists, psychologists, endocrinologists but none of them could solve this issue… I have tested every possible hormones, minerals, vitamins that is realted to sexual health or general health but everything seems normal on blood results. What i think is we have experienced some insane hormone level changes while using accutane and these changing hormones sometimes activated our receptors more than usual: like you said you got insane libido for one day and i got insane libido for two weeks somehow. So what i think is the issue right now, due to these insane libido changes that we have experienced, our body decided to silent these receptors for providing some kind of overload of these receptors/genes.

This is my current theory about the problem we have. For myself; not just sexuality, i no longer can enjoy anything i used to do. So that makes me think maybe that drug could damage our reward system too. Everybody thinks these problems we have just about depression or something. But what if we are physically not able to “feel” enjoyment? What if the part of the brain which controlls our enjoyments and desires are malfunctioned right now?

I wish you and everyone who suffers these problems good luck…

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Thank you for such detailed reply, @CollateralDamage.
I read your story and found a couple of extra similar details I haven’t seen here before. That might be somehow connected.

I haven’t finished checking the medical condition of my body yet. But I already doubt there’s some obvious physical damage. My hormones seem to be OK (except DHT is still to be tested). I experienced some pain-like feeling in my testicle area (especially after longer erection) and was suspecting varicocele or smth. But ultrasound (with doppler) showed no sign of disease and blood vessels were absolutely fine. It made me think the problem must be in some kind of deregulation in the brain, which in theory could be reversible.

My emotional state has drastically improved since the last year. My anhedonia is completely gone. My sexual desire is back (weaker than it used to be, but still kinda OK). But there’s no way to actually satisfy it or somehow realise it at least. I never thought masturbation could seem like some kind of luxury(for otherwise healthy young man).
Still a bit surprised I’m not freaking out because of this. Maybe emotions got somewhat numb too.

Some similar moments with your story:

  • I experience some gut bloating too. In fact, sometimes there’s even some pain below my ribs to the left(again, nothing on ultrasound scan, no other problems). So my gut microbiome must have some issues.
  • I experienced some weird states with sudden sugar drops and rapid blood pressure decrease after some intense exercising.
  • I’ve recently noticed my heart beat feels quite hard just like it was described in your story. I don’t know if it’s normal or not, but seems suspicious.

There might be some more connections. How long have you been suffering from this?

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Hello again, @Ultra.

I have been fighting with this situation for 1.5 years. There are lot’s of things have happened and changed. But right now my state seems much more stable and bearable than before. So if i should give some examples of which side effects are gone for sure:

  • Gut bloating is finally getting lost but i sometimes still have some digestion issues especially if i consume too much fat or white rice(idk what is special about that). so i agree with you about there is still some kind of micrabacteria problem. In addition, last doctor i have seen for digestive issues said that i might have celiac disease. ı have completed the test and sent it, next week i am gonna get results and share with you. I made a research on internet and it’s said that accutane can damage the structure of guts and other organs and there is a possibility to make you celiac. (but i think that’s a low chance)

  • I no longer have heart beat issues. After whatever i eat; sugar, excessive fat or something hard to digest i just feel tired nothing else. I no longer feel like my heart is about to explode or sometimes beats more than once in one time.

  • Sudden sugar drops have gone long time ago, i didn’t know why this was happening but now i am relieved that i no longer have that.

  • Just like you, i no longer feel insanely depressed or get lost. It’s like my brain doesn’t feel anything over exciting or good but negative feelings either. I really like your comment on like: our emotions may get numb too.

  • I started to have morning and nocturnal erections after like 6-7 months mark i still have them but they are not as strong as pre-accutane.

And another interesting detail is, i don’t have any numbness on frenulum region off my penis. That’s insane. I manage to ejculate just by stimulating this area. But other areas do not work like that. (more effort or visual stimulation needed.)

After 5 months i quit the drug i went to see an urologist doctor and he prescribed to me an antidepressant for preventing early ejaculation. I used that drug for 8 days and that drug changed my penis to a dead rubber. I couldn’t feel anything. I quit it after 8 days then for just one or two weeks my genitals were alive again. I was aroused just by touching once to this area. This experience itself made me think this “numbness” situation can be about some seratonin levels in our brain. (As far as i learned, antidepressants work on seratonin levels in brain for effecting ejaculating mechanism.)

I want to ask you, have you ever had some sleeping changes? I no longer can sleep 7+ hours without awakening. My sleeping quality has decreased and sometimes i wake up like a zombie and do not feel refreshed.

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Hey,
My first guess was I was likely to have low serotonin level and it was messing with my errection control. So I tried combination of supplements: 5-HTP + L-Tyrosine. Surprisingly, it worked. I’m still not sure of the connection, but my short recovery fits right into that period of taking them. I’ve got 2-2.5 period of restored sexual function but it slowly faded to my typical PAS state.

Considering all the similarities in our stories Im interested in your celiac test outcome.

My heart beat issues could also be some vaccine sides. So I’m expecting them to go away soon.

Surprisingly the trend of improving morning wood is still going on. It gives me some hope to see some more important improvements again.

Well, I have a long history of sleeping issues (basically, since I entered the university). It was definitely worse while I was on Roa which I didn’t realize at that time. I tried all over-the-counter drugs and some more serious ones, plus experimented a lot with melatonin. And none of that really helped me. Now my sleep has also imroved a lot. I attribute the positive change to following the protocol suggested by Prof. Huberman in his podcast. I highly recommend it for everyone.

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It seems to me that my hairloss has somewhat decreased. It might be false impression but it doesn’t look that bad as a month ago.

My hairloss has completely stopped. I have male type hairloss genes from both my mother and father. I was losing my hairs rapidly before accutane and it was even faster while on accutane. After my crash i no longer lose my hairs. I think some parts of my body no longer responds to DHT. I got rid of my acnes and hairloss but got sexual dysfunction and digestive issues, what a funny trade…

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Well, I developed hairloss after accutane. And in my case it wasn’t even a trade: I still have acne and have no idea how to get rid of them, so I got PAS for nothing.

I feel you mate, i wish you get better eventually.

I got my celiac test results. Well i guess good news: i don’t have a celiac disease. But i still have some problems about digestion. Sometimes i think it would be better if i know what i have even if it’s a hard disease. I have an appointment with doctor again on next week. I believe nothing will happen but after that i will focus to brain health completely.

Recently i suspect from adrenal fatigue and hpa axis dysregulation. Please let me know if you have some information about that situation.

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Thank you for reaching out to me.
I’m glad you don’t have celiac disease. Tbh I agree it would be better to know the hard truth, at least to better evaluate the situation.

What makes you think it could be adrenal fatigue and hpa axis dysregulation?

Another pack of supplements has finally arrived. I’ve started some new ones today. I don’t expect much from them, but will write here if anything changes.

Well, before 5-6 months ago my energy levels were much more high. I was easily digesting and gaining weigh in short therm. I was able to have heavy workouts 4-5 times in a week and these workouts were really heavy. ALSO, i used Panax Ginseng at these times for just one month and it was the only supplement that i have used. I was lifting heavy non-stop for 1,5 hours and i wasn’t even feeling tired. But even at that time i still had libido and erection problems. So when i went to an endocrinologist and done some blood tests we have observed: my one and only blood test result which was really higher than it should be was DHEA. At that time my endocrinologist told me my adrenal glands were working overactive. But he didn’t take that seriously and diagnosed me with depression and stuff. But just a month after that i crashed again. My libido and erections gone even worse. In addition, i was no longer have heavy workouts and sleep well anymore. I was not able to walk or lift anything. I realised i no longer sweat after physical activities. My mouth and skin was incredibly dry. These crash was like 6-7 months ago. Somehow i got better but i am no longer able to work out as i did. When i do work out it takes 2-3 days to recover.

I believe not just my adrenal glands but other glands were also overactive and at some point they got tired. But i still don’t know what has pushed them to work more than usual. That just made me remember that insane libido and sexual ride that we had just after we quit accutane maybe that was the time they started to work overactive too.

When i was looking at stories on this forum, surprisingly i found out large number of people got their DHEA levels high too and most of them have mentioned about adrenal fatigue. So that may be the reason of my fatigue, digestive issues, sleeping problems etc… I do not think it has a big impact on libido or erection quality but i thought it’s worth to consider.

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That’s a really interesting theory. It might be a significant part of the whole problem. Now I want to check my DHEA too. It’s a pitty I can do it only in a month or so.

Good idea man, please share your results with us when you do it.