Daniel's Story - Searching for relief

Where are you from (country)?
Israel

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?)
Via link from The Post-Finasteride Syndrome Foundation web site.

What is your current age, height, weight?
42, 180 cm, 77 kg

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

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

What condition was being treated with the drug?
Hair loss

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

Date when you started the drug?
2016

Date when you quit the drug?
August 2022

Age when you quit?
41

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

How long into your usage did you notice the onset of side effects?
about 4 years into my usage I started to notice something happens but it took me 2 more years to relate it to the Propecia.

What side effects did you experience that have yet to resolve since discontinuation?
Severe depression, suicide thoughts, low libido

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
[ ] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] 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
[ ] 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
[ ] 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)
[X] Muscle Wastage
[X] 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
[ ] 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’ve tried some anti depression drugs - Escitalopram, Mirtazapine, Bupropion.

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.

Hi, My name is Daniel.

About 8 years ago I’ve notice that I’m starting losing my hair, only in the crown area, but it was really noticeable. I have the same hair as my father, and he started to get bald in the exact same way in the exact same age, and it took him no more than 5 years to get completely bald in the crown area.
I read about Propecia and it seems to be the right drug for me to stop this hair loss. I also read that Propecia is associate with reduce fertility, I’ve already had 2 kids, we wanted another one, so I decided to wait until my wife get pregnant and right after she did I started to take Propecia. 1 pill a day.

It was 7 years ago. The only warning I got from my Doctor is that it might cause a decrease in my sex drive and if so I can stop and things should go back to normal. In the first years I felt nothing wrong, when I try to look back at that time now, I think that maybe I’ve started to feel more tired and depressed even than, but I thought that it is just me aging and the routine of life, raising kids and etc.
3 years ago my condition starts slowly to get worse to a point that I couldn’t ignore anymore that something is wrong.

It comes in waves, there were weeks that I felt almost normal, had energy, sex drive, felt good, and than there were weeks that I felt really depressed with no sex drive at all. At that point I didn’t relate it to the Propecia, I didn’t know what it was, I thought it is probably a regular depression, I’ve considered start taking anti depressions all that time but than comes few good weeks and I thought that maybe I’m OK. It was keep getting worse slowly, there were more weeks of depression, the depression was getting more severe, but I still had “normal days” in between, so I wasn’t sure what to do. I had a friend who tried telling me to stop using Propecia because he felt the same way when he was using it and it all gone when he stooped, but I didn’t want to listen. I was saying - I prefer being depressed with hair the happy and bald.

A year ago I had a crash. I felt so weak that I couldn’t get out of bad. I felt the depression in such an intense way that it was unbearable, I had constant suicide thoughts. All I wanted is to die.
It lasted 2 weeks, after that I felt much better, but the since than this depression had never gone. At that point I decided to stop using Propecia. The next 2 months was really tough. I had two more crashes like the one I’ve mentioned, lasted around 1 week each, and even between them I felt really bad, I could function at some level and get out of bad but I felt dead inside.

After couple of months my condition started to stable to the state where I’m now. My mood and sex drive still come and go in waves, but I haven’t felt like the normal me since that crash. Some days I feel really depressed with no sex drive at all. Some days I feel a just a little depressed with low sex drive.
It comes and go, and even changes through the day. The things that happens to me throughout the day have absolutely no effect on my mood. I can be on vacation with my family and feel horrible and I can have bad day at the office and feel much better. I can feel so depressed and have suicide thoughts and couples of hours later feel almost normal when nothing happened in between.

I’ve tried some anti depressions in the last 8 months, so far I felt no improvement coming from that.
I can function on a basic level, I go to work, I do my chores at home, but I have absolutely no joy in life. Each day when I wake up the only thing I want is to this day to be over so I can go back to sleep.
I want to believe that maybe I’m getting a little beat better very very slowly over time but I think that it is probably just a wishful thinking.

This is my story to that point. I have some questions that might help me understand my situation and maybe someone had the same experience.

  1. Anybody else feel the symptoms comes in waves? some worse days and better days without a reason?

  2. I feel that my depression is not a “normal depression”. There were times in the past that I felt depressed but is was different. I can’t really explain it but what I feel now it is another type of depression. I’m not sad, I just don’t want to live. It is like something deep deep inside is missing, the inherent desire for life just don’t exit in me anymore. Is anybody else feels the same?

  3. I have almost no libido at all, but I don’t have problem getting an erection when I’m having sex. Is it normal for PFS?

  4. Should I keep trying anti depressions? I know that they shouldn’t help in PFS case, but how can I be 100% sure that I have PFS and not just “regular depression”?

  5. Last thing, I’ve stopped taking Propecia a year ago, and since then nothing happened to my hair. I still have all my hair. It make me think that the finasteride is still in my blood system, and maybe when I’ll start losing my hair again I’ll also feel better. Does it make any sense?

Thanks,
Daniel

3 Likes

Hello Daniel.

Please be careful with further substance use. Despite your current situation, I highly recommend that you do not use anti-depressants (especially avoid those of the ‘SSRI’ and ‘SNRI’ classes)

Our experience with patients is that when they have had bad experiences with one group of 5-alpha-reductase-inhibitors they usually respond badly to further exposure to other substances that have similar qualities. This includes SSRIs, SNRIs, and other hairloss treatments like minoxidil, saw palmetto, etc. Please be mindful of what substances you consume as they may result in further worsening. The overlap in PSSD and PFS anecdotal reports is significant enough to at least suggest that they may actually be the same situation.

Depression, suicidal thoughts and feeling very low are common symptoms associated with finasteride usage. Even if your depression has other factors contributing to it, it’s possibly exacerbated by finasteride.
Although of course, I do not know you or your specific history so please always take the best possible care of yourself and make the lifestyle changes necessary for you to feel better.

I recommend to check out the PFS Network website for more information.

In any case, welcome to the forum, and I hope you will see some improvements with time and feel a little better soon.

3 Likes

1 : yes, its normal to have “waves” from being at a better state to a bad state.

2: I feel the same. it’s called anhedonia.

3 : I have no libido but can’t get erections anymore, its way harder… Psychogenic erections are gone. need lots of stimulation now. real sex is just boring. watching porn gives me more sexual arousal.

Note : I dont respond to viagra or Cialis, but when I’m sitting down I can get erections easilly, no need for viagra.

4: stay away from anti depesssants.

my facial beard density increased a lot. my pubic hair is so small and don’t grow as much as before finasteride. I used topical finasteride for 14 days only. Suffer the big pack of sides for 7 months now.

1 Like

Hiya Daniel , sorry to hear of your story, you’ve definitely done the right thing to leave off this medication , I wish you continued improving .

  1. Yes it can come in waves , however I personally don’t attribute this to PFS always , I think sometimes life comes in waves at us and this can affect our moods, our balance , our brain chemicals our hormones etc

  2. Yes . This is something I have noticed too - I had depression for years before PFS and it is a very different feeling to what I get sometimes now.
    My depression before was very emotive - usually if something was going wrong with a girl or going wrong with my music (I’m a musician/songwriter/producer etc) it was very much like despair and passionate melancholia, whereas PFS is just like …‘nothing’ . … don’t feel particularly sad , just feel nothing . It’s quite scary in a way , to feel nothing but I count myself lucky in that I’m not affected as bad as others on this.
    Although I will say I was for the first year and it was a case of retraining my brain to feel the ‘reward’ boost again that helped. I’d do things like the washing up thoroughly , or Hoover the house , mow the lawn etc as doing these tasks seem to give me a small spike of reward/dopamine each time . I just kept building it up and up again .

  3. This comes in waves again for me , generally libido is ok most of the time and more in a natural pattern. I feel it around an attractive girl when we are interacting etc which is normal but I’m not walking round with some massive sky high libido 24/7 … I wouldn’t want that anyways and can’t imagine why anyone would. ‘there is a time for everything’….

  4. Sleep and insomnia generally has been my most difficult symptom, it doesn’t sound like this has affected you too much? I used Mirtazapine which is a tetracyclic antidepressant I believe …. So slightly different from SSRIs etc it helped me reset sleep after 18 months of struggle . I didn’t want to use it , but at the time literally couldn’t take any more insomnia, so I gave it a go. Apart from weight gain it’s not too bad …. Try and not use any more pharmaceutical medications if poss , the body is full of remarkable organs that ‘mostly’ have the ability to heal , regenerate , detox , fix… if you let it . Time is key for this sometimes .

  5. My hair has not changed really in 4 years since quitting. I sometimes feel the damage it has done means many of us will now not lose any further hair…. But this is conjecture.
    Good luck!

5

1 Like

I can function on a basic level, I go to work, I do my chores at home, but I have absolutely no joy in life. Each day when I wake up the only thing I want is to this day to be over so I can go back to sleep.
(Same as me 1 : 1)

I have almost no libido at all, but I don’t have problem getting an erection when I’m having sex. Is it normal for PFS?

So we have some real spontaneous recoveries at best. Mild cases who can live with some restrictions. And moderate cases, who still function in basic things like you. And we have the moderate severe cases with ED and a fight for barley functioning. And the severe cases not able to work or to leave the house. And the extrem bedbond cases.

But all of us have lost the lust for life, that for what every human being is living for. Lost for the profit of ugly inhumane companies and fu… investor families behind. So join the initiative and fundrising group and fight back! Just pm me.

2 Likes

Regarding point 3.

For me ED came years later, combined with Peyronie disease (see my story). Probably due to no nocturnal erections for years. You might consider supplementing with low dose Tadalafil early on.

Hi, thanks for the responds.

From your experience, what are the chances that I’ll feel like the normal me again sometime in the future? Usually those symptoms getting better over time?

Quit anti Dep. It is a drug every drug has side effects. Ur damaging ur brain Chemicals wich is already dmaaged by finasterid. Anti Dep killa ur sex drive and effects ur mood. Stop drugs.

Start fasting steak diet, lemon water high ent workout and keep funding research pfs network