Another Accutane Story - Glad the survey has launched!

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.

  1. Where are you from (country)?
    USA

  2. 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 - accutane libido, PAS PFS

  3. What is your current age, height, weight?
    28, 5’6 or 168 cm, 140 lbs or 63 kg

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

  5. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    20 mg/day for 1 month, 40 mg/day for 2 months, 60 mg/day for 1 week (then quit)

  6. What condition was being treated with the drug?
    Cystic Acne - mild but persistent at 25 yrs old

  7. For how long did you take the drug (weeks/months/years)?
    Just over 2 months

  8. How old were you, and WHEN (date) did you start the drug?
    25/Feb 2016

  9. How old were you when you quit, and WHEN (date) did you quit?
    25/April 2016

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

  11. How long into your usage did you notice the onset of side effects?
    2 Weeks

  12. What side effects did you experience that have yet to resolve since discontinuation?
    Sexual dysfunction, Vision Loss, Depression/emotional blunting, Mental Fog, Fatigue

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
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[x] Watery Ejaculate
[x] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm
[?] Reduced Sperm Count / Motility

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

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

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x] Other (please explain)
Dry skin - my ears will bleed where my earlobes connect to my head if I’m not careful taking off my shirt after surfing or something (never used to happen) I also use much more lotion everyday.

Increased scalp sensitivity - Its gotten better but it actually hurt to get haircuts for awhile when the clipper was used

Chronic Dry Eyes - always need eyedrops!

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

Didn’t really try anything long or seriously enough to provide real input.

Tried zinc/saw palmetto for a few weeks with nothing noticeable.

Tried sodium butyrate/dihydromyricetin/quercetin for a few weeks with nothing noticeable.

Tried St. John’s Wart for mood but it just gave me headaches.

  1. 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)?

No blood test prior. About 2.5 yrs after the fact I took one. This was Jan 2019 but everything was normal. The Comprehensive male hormone panel + IGF 1 from Life Extension

  1. Anything not listed in the above questions you’d like to share about your experience?

  2. Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

In 2016 I started on 20 mg/day with isotretinoin and after 2 weeks I noticed I couldn’t achieve orgasm for about 3 days through masturbation but everything else was normal - libido sensitivity etc. I had a gf at the time so I didn’t think much of it because sex was still good. Switched to 40 mg/day for the second month and started getting mild headaches and slight emotional blunting. During that month I noticed my libido had dropped but it still felt like it could be normal since some weeks/months were like that in the past. I also had the typical sides like chapped lips/dry eyes. After 2 months I started taking 60 mg/day and on the 3rd day on this dose I woke up with severe penile/testicle shrinkage and my eyes hurt when reading my phone. Later that day I realized I couldn’t achieve erection at all and my entire crotch region was basically numb. My dumbass decided to continue for 2 more days until I read posts about this being potentially permanent and quit cold turkey.

My gf lived 1.5 hrs away so we usually only saw each other on weekends. So the next time I saw her she actually brought up that we had been having sex less frequently and hoped I wasn’t losing interest/attraction to her. I told her, of course, that it was the accutane and was mortified when she wanted to have sex right then because I was too embarrassed/ashamed/afraid about having erectile dysfunction. Our sexual chemistry had always been great, pretty much we could get it on without foreplay if we wanted to. My penis would be nearly fully erect by the time my pants were off if she was in front of me. But this day I barely managed to get hard enough for partial penetration. And for the 15 seconds I was able to perform, I felt very strange - not excited, no sexual sensations. I felt like my dick was more like a strap on and I faked an orgasm for the only time in my life so that I wouldn’t hurt her feelings/wouldn’t have to explain anything to her. Anyways, the point is that the week I had seen her before, sex was pretty much normal and basically everything crashed super hard for me the week I started taking 60 mg/day.

The following year was probably the hardest year of my life (2016/2017) because I was depressed and was in despair over the litany of sides we all deal with. But very gradually my sides have been improving. I haven’t kept a great timeline but I went from 2 months of erectile dysfunction to achieving erections but with no orgasms. Eventually I gained very weak orgasms. Now I’d say I can have about 2-3 orgasms per week but the 2nd and 3rd being very weak if I manage to have them. I’d say libido is about at 8% of original so even though I have functionally improved I still don’t feel desire and sensitivity/pleasure isn’t that great either but I suppose its much better than the 0% it was before. Oh and when I orgasm there is no sensation in my left nut lol…

Other noticeable sides I’m particularly annoyed about have been loss of vision. I use reading glasses now and sure it might be age, partially, but I know that my eyes hurt reading my phone that day because my vision was suddenly blurry. I also use eyedrops all the time - my optometrist says everyone she knows that has taken accutane has chronic dry eye. Joint pain was bad enough that I stopped lifting - I started again this year and so far so good. Penis is noticeably narrower/denser and testes/scrotum are in always cold mode. Emotional blunting…for obvious reasons. I used to be super happy go lucky and just happy for no reason. I’d say I’m happy now but just not at that level I remember. I woke up extremely tired for about 2 years no matter how much sleep I got - it’s only gotten better since 2019. The mental fog was also tough because I was applying to medical school and it felt so much harder to study but I still managed to get good grades. I got the whole ‘its all in your head shpiel from my friends’ so it was oddly comforting to read some of your guys’ stories - thank you for sharing!

On the positive side I think I’m much more empathetic now - I cry at movies/tv shows when someone is really struggling. Good I suppose if I make it as a physician. With my gradual improvement, at the very least, I believe I should be able to have a baby normally if the opportunity presents. I feel like I might slowly improve every year if recovery doesn’t plateau. At this rate a full recovery at 100 yrs old!

Thanks for reading and good luck!

5 Likes

Welcome to the forum and very glad to hear of steady improvements coming your way.

You are the second young PAS patient I am aware of who is aiming to become a physician, so hopefully we’ll have 2 good doctors on our side in the near future.

Many thanks for participating in the survey, but don’t forget you report your side effects to the FDA!

Saw palmetto causes PFS and so does zinc stay away from both of those they will make you worse!

And I would stay away from Quercetin its anti androgenic. You tried quite a risky substances there.

One final request if you would be so kind:

There is currently an open petition to the FDA brought about by RxISK to add the risk of sexual side effects to the Accutane drug information. This is being done in response to the discovery that Accutane has FAR more reports of associated sexual dysfunction among teenagers than any other drug. The entire class of SSRI medications is in second place.

It wouldn’t take much more than copy/pasting some information from your member story to add another record to this petition.

Awesome, I’ll definitely be doing both. Anything and everything to help. Thanks for the links!

2 Likes

Appreciate you looking out! Good thing I gave up on those pretty quick haha

Yeah I was pretty desperate a year ago…I also read trying anti androgenic stuff might help re-sensitize our receptors rather than trying to take androgenic stuff (not sure if its right). Either way I haven’t touched it for awhile but thanks!