A Post isotretinoin syndrome victim

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)?
Indian

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?)
Devolution told me isotretinoin is being discussed here now.

What is your current age, height, weight?
23, 178cm, 65 kg

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.)?
20 mg every day ( lowest prescribed amount in India)

What condition was being treated with the drug?
acne

For how long did you take the drug (weeks/months/years)?
3 months I think.

How old were you, and WHEN (date) did you start the drug?
I took it once in 2010 when I was 15 years. I had very bad side effects in my back and bones then. But not PAS. I took it again in july 2015 (20 years old now) since nothing was working for acne and this time PAS hit.

How old were you when you quit, and WHEN (date) did you quit?
20 years, ending of September or beginning of October 2015.

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

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

What side effects did you experience that have yet to resolve since discontinuation?
Nothing has improved. I ll list the side effects below.

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
[ x] Erectile Dysfunction
[x ] Complete Impotence ( in the beginning for many months. Its a bit better now.)
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
Watery Ejaculate
[ x] Reduced Ejaculate
[x ] Inability or Difficulty to Orgasm
Reduced Sperm Count / Motility

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

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

Misc
Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
[ x] Tinnitus (ringing or high pitched sound in ears)
Hearing loss
[ x] 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?
Tried vigorous exercise for 3 months while taking protein and creatine. Tried RU, which has worked for PFS victims, twice. Tried LDN for a week.Tried a 3 day fast. Tried herbs like ashwagandha, shilajit etc for a long time. Now taking bupoprion 150mg x2 a day.

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)?
Only have post blood tests, so can’t say but I am pretty sure my testosterone was higher than the post drug readings.

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 really wish it isn’t this bad for anybody else but my condition is really bad. Story is :-
In 2010 when I was 15, I took isotretinoin starting from 20 mg and going onto 40 mg for 5 months. The course was supposed to be for 6 months. I stopped at 5 months because :-

I had extreme back pain. I wasn’t able to lie down. It hurt that much. The pain was in the bones.
I couldn’t run for even FIVE meters. My knees felt like they would break. The pain again was in the bones.
There were other side effects but these are the 2 major ones.

Luckily that time I did not get PAS.
My acne did not go away even after 5 months of iso. I tried other chemicals like tretinoin for 5 years to no avail. Let it be noted that I started applying minoxidil in 2013 and had a major depression episode the same year which went on till 2015 . I also want to clarify that I had absolutely no PAS like symptoms like loss of libido, anhedonia or ED during the depression.I have never smoked a single cigarette or drank even 100 ml alcohol, neither before PAS hit and not even now.

In 2015 when I was 20, I took iso again for the following reasons:-

Nothing was working for acne. And the acne was bad, I was getting scarring and my face used to hurt. My nose was ( and still is ) covered with thousands of small blackheads.
My derma said that I wouldnt get the same symptoms now since I had grown up now and my bones wont be growing like that time.
My friend had done a course of iso from this same derma without any repercussions in 2012. Normally I wouldn’t feel this to be a strong point, but he had really really bad acne and it just disappeared from him like some magic filter had been applied to his face. Coupled with the fact that the derma told me I that I wouldn’t have those side effects now, I took iso again (20 mg only ) in 2015 July.

This time PAS hit me. With all the sides. HARD. It was not gradual. During the course ( I don’t remember the date ), I woke up and felt something to be different. Let me quote my feeling from that time, " I feel like a switch has been turned off ". My thumb started clicking. I thought my bones were getting affected again, but I ll endure this for some time, maybe it wont be as bad as that the previous time. Of course I didnt know that time what exactly had happened. Over the next few days, all the side effects became apparent and/or developed. These are the side effects and have had no improvement since 2015 :-

1.Absolutely no libido. Thinking about sex feels unnatural.

2.100% anhedonia. I have not felt any emotions other than terror, guilt and sadness for so long that I have LITERALLY forgotten how happiness, love, nostalgia, music and the other 1000000 combinations of hormones in different proportions which produce emotions feel like.

3.No morning wood since PAS.I had morning wood every single day since 12 or 13.

4.I had ED for 2.5 years. It was so bad that it wouldn’t get erect even with manual stimulation, even when it did it would be when I am lying and it would be floppy. I had literally 0 erections while standing or even kneeling or even sitting for 2.5 years. Since the last one or two months things have gotten better that I can have soft erections (still not 100 % hard) while lying but almost never while standing. This situation most probably improved due to exercising. Prior to PAS, I used to have spontaneous erections and they had to be SO HARD that it hurt the penile base. I used to feel like my penis wanted to take off like a rocket. Going back to spontaneous erections, I used to get erections JUST BY YAWNING, not exaggerating.

5.I have lost all sensation in my glans. Its desensitized to the point that I don’t really know if I have an erection until I visually confirm it. Prior to PAS it was so sensitive that I had never in my 20 years of life slept on my stomach, because it was too stimulating for the penis to the point of pain. I couldn’t keep my penis in the shower because it hurt. After PAS, there’s no feeling left in the glans. Related to this, I had similar desensitization on the anus ( I am straight so I have never done anything there but I still remember that there used to be similar pleasurable feeling there like the glans).

6.An example of my prior libido would be that when I was 18 and in my college hostel, I once sleepwalked 100 meters to the urinal and then jerked off there, ALL WHILE SLEEPING! After jerking off I woke up and realized wtf I had just done. Prior to PAS, my record for abstaining from releasing was only 4 days, the usual being 1 day. And I really tried to abstain because releasing really worsened my acne and I used to feel cheap.

7.Erections take really long to form, this is related to libido and ED in the sense that since I am not excited, the brain doesnt really send a signal to the penis to get hard. Prior to PAS, I just needed to think about breasts for about 7 seconds to have an erection.

8.This is actual physical proof of PAS damage. I had the fastest growing beard I have ever seen in my life, I used to look an ISIS guy in a single month without shaving, 0 exaggeration and now my beard has slowed down and stops growing after a while.

9.Reiterating the anhedonia part just to confirm that I havent had an orgasm for 3 years.

10.No pre-ejaculate ever since PAS hit.

11.My thumb clicks, yes this very strange to understand. Imagine the clicking of fingers that we by pressing on them, but the thumb does it on its own without needing to be pressed. It clicks if I just move it. Only the right thumb does this. And yes this started when I was taking isotretinoin, not before.

12.I used to feel SUPER sleepy immediately after ejaculating. I don’t even feel sleepy after ejaculating now.

13.I used to have a body scent, not sweat or odour. It was pleasant. This disappeared as soon as PAS hit. The scent used to peak immediately after ejaculating.

14.I used to look good. I could have gotten modelling jobs.I got hit on/ proposed to 8 times before I was 18 (Let me show off now since this is never gonna happen now haha). Now I am bald at 23. Both the hair from my hairline and top has disappeared.

  1. IDK how it is for others, but when I used to be aroused, I literally could not think of anything else. I would lose track of everything else, I used to think this was the case for everybody else until my friend told me he used to do homework while watching porn and I was dumbfounded that time, thinking of him like a god of patience. After getting PAS I understood what it means to be simply less horny.

  2. I haven’t had dreams since PAS. I am almost sure that I have not had REM sleep since that time. The dreams that I have now are fleeting, very epheremal ( think of the dreams that happen during light sleep) and occur max twice a week. And sleep now is like half waking, I can constantly hear environmental noises. If I wake up in the middle of sleep, I donot feel as groggy or sleepy as I or any normal person should. I have not had a single lucid dream since PAS. Prior to PAS, lucid dreams happened frequently, almost once every two days.

17.In 2016 July, I got my testosterone levels checked. I was 21 and I had 370 ng/dl serum levels ( ref 241 -827 for men of all ages) . These are what 80 year old men have. Reading the above lines should give you an idea about my sex drive before PAS. TSH – 7.17 uIU/ml (ref 035 - 5.5).

18.In July 2017 , I got my blood checked again. I had done some exercising during July. FSH 1.38 mIU/mL (1.4 - 18.10). LH 3.51 mIU/mL (1.5 - 9.3). Prolactin 9.66 (2.1 - 17.7). Calcium 8.3 ( 8.5 - 10.6). Testosterone 535 ng/dL. Even though testo increased by 170 ng/dL, I only had SLIGHT improvements in ED and nothing else.
I got my testo done again on October 15 and it was 561 . No difference in actual health.

I have written mostly about sexual problems and only one line about the other mental effects like anhedonia, but believe me thats just as bad. The ability to not feel happy, not feel good at all is heartbreaking.

The terror of waking up everyday and realizing that things aren’t getting better and I have already lost the best years of my life. Making my mother cry every time I talk to her is heartrending.I haven’t even told my father because he is finally finding happiness in life and when I tell this to him, he will break.

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Hi there PAS and welcome to the forum.

Thanks a lot for sharing with us your experiences with accutane and for providing such a detailed account. I’m really sorry that accutane has had such a negative impact on your life. Although it has impacted tremendously on some of your formative years you are still a very young man, although I know that doesn’t take away what you have lost. Try also to not carry the burden of how what has happened to you is or will impact your parents. I’m sure that they wouldn’t want you to suffer more through worrying about them worrying about you. I know that it is a vicious circle. Maybe if you had a friend or a medical professional to talk to it might lessen that burden somewhat. As you may know the pfs foundation are funding studies which are already bearing fruit and as a community there are also initiatives taking place: Important Announcement: Two Community-Led Research Projects - Please Participate so hope has never been so tangible.

Your joining the community is part of that movement towards us all getting better.

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“Tried RU, which has worked for PFS victims” Can you elaborate on that please ?

Hey mate, many PFS victims tried taking mifepristone in very low doses (around 10 mg, they experimented higher and lower around this number) and had improvements in days. They took it for 4-5 days and stopped, slowly the benefits subsided but their baseline still increased permanently a bit. So currently many people are slowly cycling this.

This isn’t my idea and I tried it but it didn’t work for me ( remember I am PAS). I don’t know the rules here so I ll refrain from posting the forums name until the mods approval, although I don’t think it will be a problem since this isn’t a competition. I ll pm you in the meantime.

Hey man, I would absolutely be down to take the 23andme test. Do you know if any discount is gonna roll by so it would be better to wait until then? I just took an HTMA test and that set me back by 150$.

Hi there PAS. I’ve no idea when their next discount will be. I hear that it’s a couple of times a year. You could always try contacting them to ask as they’ll definitely get your custom when it comes round.

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Hi PAS, what dosage of mifepristone did you take and for how long? Also was it a reliable supplier? I really think mifepristone could still be worth trialing properly but dose and duration need to right.

Hey flynn, i asked a lot of people to try mifepristone when I had done so we could have actually an appreciable number of people going through it at the same time.

The fact that it worked for @Ronnie99 , while being only n=1, with the paper that he and @yedek1 linked sheds some light.

A few other people had tried this IIRC. I had taken the idea from them but I think whatever response they had wasnt good enough to deem it a cure. I was the only PAS though.

The course everyone did then was to crush a 200mg pill into smaller pieces and take those over 4 or 5 days or so. That dosage shouldnt have been risky

Ronnie did dosage that was very different, so I cant attest to it being 100 percent safe just because I didnt get worse from my trial.

I have been taking rhodiola for a month for not much effect as of yet.

But ever since that post by yedek that day, mifepristone hasnt
left my mind for even an hour. The thing about Pas is, that its more than just our anhedonic, ‘mental’ changes.

My skin became completely dry in one day, a sharp contrast to my original skin which was so oily that my nail would form a reef of oil if I ran it through my nose.

My hair fell off, all of it. In months, this is coming from a 20 year old boy.

I lost all my natural muscle mass. My beard stopped growing. All of this in one day ( muscle mass over weeks).

These symptoms make me feel an adaptogen wont be our cure. I tried mifepristone and tried procuring dht for this purpose, as they affect the upstream hormones rather than try and handle the ‘mental’ changes as adaptogens do.

Since we have nothing else in our hands anyways, mifepristone might be a worthy trial. Don’t know how badly it will react with rhodiola. Rhodiola is heavily prohibited when undergoing a course of serotogenic drugs since rhodiola itself is a strong herb.

Hi PAS,

After I took the Mifepristone, during the first week I didnt feel much at all, so I said to myself this didnt work. Then another week later I started noticing subtle changes, less anxious, higher libido, a sense of well being returned, energy returned, these changes built up. For the first time I felt about 90% pre PAS.

Then as time went on after 5 months Instarted noticing the effect wearing off, energy was coming down, well being was falling, but interestingly my libido was still there, harder erections and much more interested in woman, this is still with me today.

Regarding the side effects that returned, my gut and intuition feeling is, Mifepristone reset something in the body, but overtime a mechanism or something just again put the body eventually in a post PAS state minus the sexual improvements.

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I Just read your story, and I can relate to every symptom and side effect you got. Even the ones related to dreams, sleep, beard, thumb clicks, post ejaculating effect. (I’m a PAS suffer)

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Have you done or thought about cycling it?
Do you anyone else who has tried it?

@flynn @yedek1

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Such a stupid thing that took away our life man.

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Same exact fucking side effects here. All of them.

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Hey PAS sufferers! Wanted to ask you if you at least experienced some improvement in sexual sides over time? Unfortunately I never read positive stories from accutane users, I seems PAS recoveries dont exist to me. What do you think about it?
Hope you are all getting better!

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No improvement here, more so I would say it has gotten worse over time, I had a few very brief recoveries that lasted a day or so, but the last one was years ago.

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All those here who suffer from persistent side effects after Isotretinoin should participate here: Here because of Isotretinoin? You must read this topic

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Thats sad to hear! Maybe its stupid but I have to keep some hope otherwise I cant live on

I will cycle this and report back here, just trying to get a reliable source

Im thinking of giving it another go in January for 7 days.

Life ain’t over yet mate, gotta grind on. You never know whats round the corner. Cure/fix could be closer than people think.

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