Daytona's Story: How Roaccutane/Isotretinoin ruined me and how I'm recovering

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)?

Switzerland

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, RayPeat Forum

What is your current age, height, weight?

21, 1.78m, 70kg

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

Roaccutane

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

20mg/day

What condition was being treated with the drug?

Mild Acne

For how long did you take the drug (weeks/months/years)?

about 3-4 months

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

2015, so I was 15

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

15, after I started noticing side effects

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 few weeks

What side effects did you experience that have yet to resolve since discontinuation?

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)

Extremely dry skin and lips in the beginning, followed by sun sensitivity and permanent dry skin (gets better if my diet is on point) until now.

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

Cialis
Viagra
Almost every herb/vitamin there is (Tongkat Ali, Maca Root, Gelatinized Maca, Ginkgo Biloba, Tribulus, L-Dopa, Omega 3, Vitamin D3, Tyrosine, Vitamin K2, Creatine, Magnesium, Zinc, Vitamin A, P5P, B5, B12, Niacin etc.)

I also fasted for 1 whole week in 2019, which did help with some symptoms.

Other than that, I try to follow a high fat healthy diet, which has helped immensely. Especially when eating organic raw meat!

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 had a blood test done a few years back, which showed that my Testosterone was totally normal, in fact it was in the highest category (27.5 mol/1). Everything else was normal except for Prolactin, which was way above average at (22.9 ug/1) Normal= 4.0-15.2

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

My story started back in Highschool. I was living in South Africa at the time and was a happy and healthy young man trying to get on with life. At about 15 years old I started to notice some mild acne on my chin and neck, which wasn’t too bad at all really. However, the stupid thing I did (if you have acne trust me on this one) is using all kinds of creams and face wash products to try and combat these outbreaks. Huge mistake! Acne just got worse and I grew more insecure about my complexion. Bad acne was hell on earth for me as an otherwise healthy dude. My parents also showed concern about my skin and eventually my father got his friend (Medical Doctor) to give me a prescription for Roaccutane at 10mg building up to 20mg. I was desperate for a solution so I gladly took the pill of the devil.

At first my skin got a lot worse, which apparently was normal so I brushed it off. I remember having extremely dry skin and lips which would actually crack and bleed a few times. I also started to look very skinny and “drugy” if you get what I’m saying. This may also be due to the diet I was on (was extremely restrictive and “healthy”). Now this is where the sexual sides come in. I used to go for long runs around my school campus and I started noticing that my penis would shrink quite a bit (normal during exercise, but this was not normal) I used to masturbate every other day and had a fairly active sexual imagination before Roaccutane. However, now I somehow lost that ability and getting an erection was nearly a mission impossible. Of course I panicked and immediately stopped the medication cold turkey. The symptoms did not go away…and after a few months I did the hardest thing I had ever done, which was telling my parents about my situation. I called my Mother and cried my eyes out.

They took my situation seriously, which I am very thankful for. But even my parents aren’t magicians so they couldn’t really help in any substantial way. Over the years I have minimised speaking with them about my situation, because being open about such a personal and intimate thing is hard to pull off.

I’ve been battling this condition for 6 years now and I would say it has definitely made certain situations a lot harder for me. Even though I’ve had two girlfriends in this time, I never was able to regain that true sexual attraction I used to have. I still found them physically attractive, but my libido and penis weren’t in agreement with me, so it was hard to pleasure them. In both relationships, I believe my fear of letting them down is what led to both break-ups. I never told them about my condition.

Now that I’m 21, I have found a few things that have helped me through my battle and sometimes made me feel better again…even if it only lasts a few days.

The following has helped:

-Clean, high fat diet, raw organic vegetables and meat
-Accepting you condition (of course I still struggle with this) and believing that you will get through everything that comes your way, no matter how bad you feel

  • Lifting heavy weights and HIIT workout, helps to keep your mind and body in the best possible condition
    -Stop watching porn and try to find a more natural way of exploring your sexuality, using your mind and ofc the best thing would be a real girl who understands your condition and is willing to work with you
  • Supplements: Vitamin D3 was one of the most effective ones I’ve tried until now, but be careful of the dosage and take Vitamin K2 and Magnesium with it. Lowish dose of Zink helped me out at times (DON’T OVERDO IT!) Magnesium has been excellent for relaxation and anxiety as well. Creatine made my libido go up at times, but wasn’t consistent.
    -Then again, just eating healthy and AVOIDING ALL SUPPLEMENTS also made be feel better again, however this was during a period where I abstained from masturbation and had things “going on” with a girl at my university. Remember: Porn is not real, one has to explore ones libido around REAL WOMAN

This battle is a tough one and sometimes I ask myself why I ever took a drug without researching it properly myself. I was young and trusted the knowledge of the doctor. I couldn’t believe that my fundamental human sexual desire could be diminished by a drug for acne. BUT, things do get better overtime and I still believe that one is able to recover, if not fully at least to a certain degree.

I will keep on experimenting with different things and let you guys know if I see any improvements!

-Daytona

2 Likes

Dear Daytona,

Welcome to our forum! I am sorry that you are suffering from these side effects, but I am glad that you have found a way to live with them. Many people here can relate to your story.

The staff of this forum is committed to create awareness and initiate more research into persisting side effects from Finasteride, anti-depressants and Isotretinoin. Once critical project is our survey that will generate a comprehensive data set of patient symptomatology based on validated questionnaires. It would be very helpful to have additional data points from the Isotretinoin community. Please look at this thread and participate: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

Thanks and good luck!
N.

1 Like

I recognise a lot of your story, a lot of similarities with my own.

The thing I’d be very careful with is supplementing with vitamin A. Accutane is essentially a mega-dose of vitamin A, and supplementing vitamin A can worsen your lasting symptoms.

I agree about magnesium - this is the only thing I take besides tadalafil. I take magnesium daily, in glycinate form. I’ve experimented with all different kinds: magnesium threonate, liposomal liquid magnesium, ionic liquid magnesium, magnesium citrate. Magnesium citrate is by far the best form. If I don’t take it, I get muscle twitches randomly throughout my body, racing heart, problems sleeping … so I keep well-stocked.

About vitamin D - I have been interested in this for a long time because I typically get ‘good’ periods in summer - stronger libido, random erections, brain fog clears. But then my health markedly dips off over winter. So I thought that vit D levels may be the connection. However after supplementation with pills I found that it made symptoms worse - it massively increased anxiety levels. I have no idea why. I was taking it with magnesium and also getting K2 from eating fermented foods.

After this experience I next experimented with a medical-grade sun-lamp, which has been certified to increase vit D levels. I thought this might work better, as a different delivery mechanism. I initially thought it was yielding some benefits, but unfortunately I had to stop because it quickly began producing the same anxiety effects as the pills.

After searching around online, vit D supplementation seems to to create heightened anxiety in some people. I couldn’t find a particular answer on why this happens. There does not appear to be a clear solution. If I increase my levels through sun exposure, there is no problem. Of course, winter remains the obstacle.

Ultimately I have decided to just try to keep an “ok” intake by eating several portions of oily fish per week. Am also looking at where I can go on holiday in sunny places during winter, without having to take too long a flight. It is not a perfect solution and I am currently in a six-months-long period of brain fog which I cannot seem to shift. Nothing else has changed in my regimen between ‘good’ and ‘bad’ periods except lack of natural sunlight - so all of this is very frustrating. I am hoping I can break out of my current bad spell now it’s nearing summer.

1 Like

Howzit Pete

Thanks for sharing your thoughts. I am aware of the dangers of Vitamin A and I only took it at low doses a few years back, so no worries there. I have just recently discovered magnesium glycinate…actually on this forum…and I it has given me a lot of benefits. When I started taking this kind, it helped me come out of a dark mental state. It definitely helped with sleep, relaxation, physical recovery and just feeling at peace with myself.

I can relate to the ‘good’ periods in summer and it’s made me think about leaving Europe in the future. Living in a warm climate with a lot of daily sunshine, definitely helps my condition. I can imagine myself sipping a cold drink on the beach somewhere in Asia or South America and just enjoying the natural Vitamin D (which I found is the most beneficial).

I’m sorry to hear that Vitamin D supplementation didn’t work out for you. It did for me, well for a certain period, which didn’t last too long. After a while it seemed to make my vision worse and also decreased sensitivity in my lower body. I stopped taking it a while back and decided to only go for natural sunlight from now on.

I hope your brain fog clears up soon and I would definitely recommend keeping your diet in check and trying to live in the present moment. When my brain fog was at its worst, I noticed myself overthinking both the past and the future…which made the fog unbearable. What also helped is deep breathing techniques, which provide your brain with some good ol’ fresh oxygen.

Take care man

-Daytona

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Are you able to have decent sex for now?

It fluctuates a lot. My libido has been amazing at times, especially in summer. However, I still struggle with maintaining an erection if it’s not constantly stimulated. Nevertheless, I’ve had some great and satisfying sex in the past 6 years…but of course this only occurs once in a blue moon. Hope that makes sense.

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I meant to type magnesium citrate above, rather than magnesium glycinate. Glycinate was second best to citrate for me.

I see, I’ll definitely have a go at it and see how it works out for me.

Do you have also a weakness and stressed out pelvic floor muscles? Like those muscles can’t work properly? Anyone know why this happens? Is it AR damage on muscles or more like prostate causing damage to that area and inflaming nerves therefore weakening the muscle?

Yes, although my symptoms fluctuate a lot…I’ve had periods of time, where I get a leaky bladder as well as a feeling of “weakness” down there. I’ve read about Kegels but was never able to do them consistently.

1 Like