10 years of PFS, possibly PAS

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)?
Belgium

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

What is your current age, height, weight?
40yo, height 180cm, weight 60kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Accutane in my youth and finasteride as an adolescent

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1,25mg/day

What condition was being treated with the drug?
Hair loss

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

How old were you, and WHEN (date) did you start the drug?
24

How old were you when you quit, and WHEN (date) did you quit?
31

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

How long into your usage did you notice the onset of side effects?
Side effects crept up very slowly and became apparent in a relationship

What side effects did you experience that have yet to resolve since discontinuation?
Low libido, erectile dysfunction

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?

Tried many supplements to no avail. PDE5 inhibitors work for ED and dopamine releasing stimulants for libido/arousal

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)?

As with other PFS people, hormonal levels are in the normal range. Vitamine D (seems to be typical for PFS) and Androstenedione were below the normal range.

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

As many others, i’ve been on the forum for many years, but never took the time to share my story.

In my youth, i took accutane for acne. I responded well and did not have any side effects at this time. In hindsight, i probably did have sexual side effects that i did not attribute to this drug.

Many years later, i was concerned about my hair loss. Started with minoxidil and later got a prescription for finasteride. I was informed about the possible side effects and was told they would resolve after quitting.

As to hair loss, I was a ‘good responder’. Low libido and erectile dysfunction slowly became apparent but i accepted this, as it was part of the deal and i could (supposedly) always quit later.

After seeing my dermatologist and telling her about the problem, I quit taking finasteride for a few weeks and restarted it as i would rather have hair and a low libido at that time. Eventually, i quit taking it after realising it was PFS. I did not experience any crash.

Mental sides, brain/penis connection and genital sensitivity have improved. What gives me a glimmer of hope, is that dopamine releasing stimulants work as a quick fix for libido, although it is not sustainable and might even be harmful. I do believe it could help to understand the syndrome, as dopamine plays an important role in day time erections, libido, focus (brain fog) and depression.

Welcome aboard and sorry for your longstanding troubles. We’re of the same age and seem to have had similar experience to finesteride. I took took 1.25mg back in my twenties and have had sexual problems creeping in slowly until one day I decided to quit cold turkey. Penis insensitivity have improved over time but my primary issue was low libido/depression. Antibiotics and anti-estrogens made my issues much more complex, though.

What have you taken for dopamine? I’ve been on Tyrosine and Mucuna herb in the past and both seemed to raise my dopamine and restore my libido temporarily. I did microbiome analysis and it came up with many abnormalities. I’ve been on an individualized diet/lifestyle and have been seeing accumulative improvements.

Thanx! It really helps to know we’re not alone. I’ve tried many things that are supposed to boost dopamine: tyrosine, mucuna pruriens and uridine with little success. I’m not advocating any stimulants but check my other post if you want to know more.

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