In Search of a cure for Post Accutane Syndrome

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)?
Germany
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?)
I don´t remember how I found it, I guess it was with Google.
What is your current age, height, weight?
26, 180 cm, 68 kg
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.)?
10mg/day
What condition was being treated with the drug?
Acne
For how long did you take the drug (weeks/months/years)?
4.5 months
How old were you, and WHEN (date) did you start the drug?
17, Beginning of November 2012
How old were you when you quit, and WHEN (date) did you quit?
17, Middle of March 2013
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 think I already got sideeeffects just by using isotretinoin creme, but I didn’t associate them with the drug. Then when taking an oral dose after 3.5 month I had severe side effects and knew it came from the drug.
What side effects did you experience that have yet to resolve since discontinuation?
Depression, Depersonalisation, Anxiety, Emotional blunting, concentration issues, losing train of thought, arthritis in my jar, Dry Mucouse membrane especially in the nose, sinuses and ears, Intracranial Pressure, Loss of morning erections and spontaneous erections, genital numbness
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 went vegan and did a 30 water fast. Due to the fasting I had a psychotic break and I have to take an antipsychotic since (that was in 2015).
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)?

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.

While on the drug, I developed intense brain fog, which always led to me loosing my train of thought while speaking. This led to intense social anxiety. I think this mental issue is the most debilitating and I still suffer from it today. I lost a lot of relationships because of that. Also I was always tired while on the drug and thought while I was in school it just cannot be, so I googled the drug and saw that there were people who killed themselves after taking this drug, so then it was clear to me that my issues were coming from the drug. I thought that my issues would resolve when I discontinue the drug, but the only thing which got better was the arthritis in my jar.

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Hi @Thommy280495 , and welcome to the forum! Thank you for telling your story after all this time. You are definitely not alone, and I hope you’ll use this thread to update everyone on how you’re doing.

30 days of water fasting sounds extreme! I’ve had some benefits from water fasting myself, and I’ve always wondered if the effects would be bigger if I fasted for a longer period. Looks like there are risks that I was not aware of.

In the meantime, here are a few things you can do:

Disclaimer: I don’t want to suggest treatment option for anyone. This is an entry before I myself take treatment options and I want to update you with the treatment option I take. I also would want to hear what other people tried to cure themselves or what people think about the option I take.

We need to keep the discussion rolling what could be a possible cure for PAS.

Isotretinoin changes the gene expression of the gene of the 5 alpha reductase. It does not mean it changes the gene, just the expression of it. As a result of the changed expression there is less 5 alpha reductase available. This definitely happens while taking isotretinoin. It would be speculation to say that the changes in gene expression persist, what I don’t wanna do. I want to follow a protocol which is aimed at the 5 alpha reductase activity and keep you updated, but first I want to further eloborate the function of 5 alpha reductase. 5 alpha recutase is responsible for the conversion of testosterone to dihydrotestosterone. So if there is less 5 alpha reductase available during treatment less testosterone is transferred into dehydrotestosterone. This is affirmed by a study which also shows that there is less dehydrotestoerone available and that isotretinoin also effects androgen receptors negatively. https://pubmed.ncbi.nlm.nih.gov/7714084/

I thought if we can downregulate the expression of the gene, how can we upregulate it? I found that Vitamin D upregulates the expression of the gene SRD 5A1 which is the gene for the 5 alpha reductase. https://academic.oup.com/jcem/article/99/10/3766/2836468
I don’t know how much Vitamin D though, but will look further into it. This is only one approach for me, I could take.
A different approach for me would be to increase the 5 alpha reductase naturally which could be done by adding a glycin and Niacin amid supplement and by eating sorghum. I don’t know how effective this is yet.

Another function of 5 alpha reductase is to convert progesterone into 5 dihydroxy progesterone. This is then further converted into alloprgenanolone which calms anxiety.
5 di hydroxy progesterone is not available, and allopregnanolone cannot be taken orally. So the only possibility to get an effect after my opinion is to take progesterone. That would mean more progesterone being available, so that more 5 dihydroxyprogesterone can be built and so on.

The protocol I will be following will be this: I will take 10 mg of progesterone creme for 2 weeks on 4 days off for a period of 5-6 months. I will also take tongkat ali. This is the protocol suggested by light_at_the_end for people with Post Finasteride Syndrome. I already ordered both substrates and will start taking it as soon as I have it.

I also had some bloodwork done and will share my results, especially my progesterone and allopregnanolone levels.

I will keep you updated.

Hey Thommy, we absolutely have no clue what causes the epigenetic changes. We don’t even know if isotretinoin or finasteride directly changes gene expression. There are so many more intricate mechanisms at play.

The epigenetic changes could be a result of something at a whole different level. Like changes in estrogen receptor density or neurosteroid receptors.
As pointed out in the Baylor study, we don’t know whether the change in gene expression is actually the cause of our symptoms or the result of another mechanism we don’t even know about.

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I got the changes in gene expression during isotretinoine treatment from this study: https://www.tandfonline.com/doi/pdf/10.4161/derm.1.3.8258?needAccess=true

I´m not saying I know the mechanism why the gene of 5 alpha reductase is downregulated. My conclusion is just that during such an down regulation there is less of the metabolite which is dihydroprogesteron which is converted to allopregnanolone.
Also if I’m not mistaken there is a study that shows that the reduction of neurosteroids persists even in Post Finasteride syndrome.
My approach is to have more allopregnanolone through the intake of progesterone.

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That’s a quite interesting theory. I will be looking forward for your results Thommy, good luck!

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Hi @Thommy280495, best of luck with everything. Just a heads up to please use the self-reporting from to report any updates to your condition in the future.

Thanks,
Mitch

I already take 400 mg of magnesium daily and also a b12 supplement, because I’m vegetarian. What kind of probiotics do you take? Could you get rid of your brain fog?
I looked at the website you recommended, thanks a lot, I will include coconut oil.

Hey guys,

A note again, please use the self-reporting form in your member story to report improvement or worsening from use of particular therapies.

Thank you.

Could you share your blood test results, please? I’m really curious about the progesterone level(from all my blood tests only progesterone and 3α-diol-G were out of the reference levels).

I got my first result of my blood test.
My progesterone is way too high! My value is 0.64 nmol/l and it should be < 0.16-0.48. The guy Ronnie who took Mifepristone had a value of 0.11 nmol/l and his scale was 0.002-0.159. So if I take his scale my value is 4 times the upper limit.
This means my progesterone is not converted into 5-Dihydroprogesterone, which means my 5 Alpha Reductase 1 is not working. This is some proof for our theory that 5 alpha reductase 1 is inhibited permanently. I’m still waiting for my Allopregnanolone value, if its coming out low, definitely its proven.
I made all these values before I took progesterone. I took progesterone the last 4 days and will definitely stop now.
This is the study which was the basis for the mifepristone treatment of Ronnie: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030330/

Everyone who’s interested can read it, I will read it now, my doctor will also read it.

Interesting, my progesterone level seems to be low. Something must be different in our cases.

What was your value in nmol/L? A guy wrote me who was at the lower end of the scale, but had a value of 0.8 which is also way too high for men.

It was <0.32 nmol/L, with reference values 0.3 - 2.2

That’s still high if you take the reference value of Ronnie, the guy who took the mifepristone. It should be lower than 0.16 for men.

Are you sure his has the same scale? Nmol/L isn’t usually used in USA etc.

I had above 1 nmol/L first time I got tested then it was in range like 0.4 nmol/L next time but I didn’t feel much difference between the tests.

I’m not so sure about the reference values anymore, because there are different values available and the sources for men are rare. I talk about it with my doc and let you know.

Yes, it’s so confusing. Also, all the doctors who saw my results said there was nothing critical, definitely no signs of some serious issues.

I forgot to mention that I already took 3 antidepressants and they didn’t help me, so I’m adding this now so those people who need the information can see.

  1. Name of the therapy/substance: Moclobemide
    • Dosage: 300 mg
    • How often you took it: daily for 3 and a half weeks
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [x]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [24] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [x]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [x]
    • Slightly worsened []
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]

So I took it against the brain fog/mental sides. In the beginning I had more drive to do things, but then I had no energy and trouble concentrating while studying and that’s why I stopped. Also it didn’t change the brain fog at all and no improvement in the sexual sides. Now my energy is coming back and I’m nearly as I was before taking it.

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  1. Name of the therapy/substance: Sertraline
    • Dosage: lowest dosage, I think it was 50 mg
    • How often you took it: daily
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [x]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [2] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [x]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [x]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [x]
    • Slightly worsened [ ]
    • Greatly worsened [ ]

This drug had no effect on me, it just made me tired.

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