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Where are you from (country)?
Germany - near Frankfurt am Main -
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 -
What is your current age, height, weight?
born in 1991, about 180cm, about 68kg -
Do you excercise regularly? If so, what type of excercise?
No exercise but sports regularly. Football almost once a week and cycling to uni every day. -
What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Meat! -
Why did you take Finasteride (hair loss, BPH, other)?
Hair loss -
For how long did you take Finasteride (weeks/months/years)?
about 2 years I think.
Might have started in 2010 and quit in July 2013 -
How old were you, and WHEN (date) did you start Finasteride?
Was 19 back then I think - started in 2010 -
How old were you when you quit, and WHEN (date) did you quit?
I was 22 when I quit - July 2013 -
How did you quit (cold turkey or taper off)?
cold turkey -
What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
the 5mg thingy which I split in to quarters and in the last year I threw it into the Minoxidil-bottle to use it as topical -
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1,25mg, lower dosages in the last year - around 0,5mg -
How long into your use of Finasteride did you notice the onset of side effects?
noticed ED and loss of libido in early 2012
Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[X] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X] 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
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
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What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
tried Curcumin in Winter 2013 for maybe a month - did not notice a change I think - it’s been a while
Tried acupuncture in march-april 2014 - did not notice a change
started Wellbutrin/Bupropion in March 2014, still take it. Seems to help a lot after taking it for months. -
If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
My after-fin blood tests always were totally fine and in range. My T is on the top end.
I will search for some blood work and post it here later. -
Anything not listed in the above questions you’d like to share about your experience with Finasteride?
worst idea of my life by far -
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
In early 2012 I noticed loss of libido and ED. Libido was totally lost, sex was not always possible. Had no idea what’s going on.
No other side effects at that time. Wanted to quit fin to see if Libido gets better.
I temporary quit fin in summer 2012 and two weeks after my libido and erections returned to what they were before.
Still didn’t want to lose my hair so I started Fin again in lower dosages. I wanted to find a dosage low enough to not destroy my libido but high enough to slow down my hair loss.
Worst idea I ever had.
I gave up this experiment in July 2013 because I couldnt find a dosage that did not kill my libido. Two weeks later I crashed.
I was totally destroyed. Not able to cycle 500 meters without being totally exhausted. Brain fog, muscle twitches, depression, no motivation to do anything, anxiety, no sleep, being dizzy all day.
- the typical crash lots of users described already. This lasted for a month.
Then from one day to the other (after one month of hell) I was totally fine again.
Everything (except Libido and ED) was 100% normal again. The crash was gone, totally.
But libido was still killed and my erections were very weak, too.
In late August I had the next worst idea ever:
“Maybe if I take FIN again and then slowly fade it out instead of quitting cold turkey, my libido will come back again.”
So I took fin again for seven days. I felt all the symptoms I had during the crash come back so I stopped it again. - This was the moment I realised that the crash was related to Fin. Dunno how I was so dumb. It definitely was a no-brainer to take fin again. But at that time I thought all the symptoms I experienced during the crash would fade again like they did before, well they didnt.
Because this time the crash didn’t last for four weeks but was permanent.
Brain fog, muscle twitches, depression, no motivation to do anything, anxiety, no sleep, being dizzy all day again.
A strange thing was that I randomly had days when I had no symptoms at all (except from Libido and ED).
And then the next day I’d be totally crashed again for weeks. This is weird but I probably don’t have to tell you bout that.
(But these good days were the minority. Most of the time I felt like shit.)
In February 2014 I started Elontril (which is the German brand name for Wellbutrin/Bupropion) which I still take.
It’s the only medication I use.
Today - July 2014 - I feel that all of my symptoms (except Libido and ED) got way better.
I very rarely have days when the brain fog, fatigue and anxiety comes back.
These bad days gradually got less frequent. And every time I got into such a phase of mini-crashes, they became less severe.
So right now I have periods of a week where I feel 100% cured (this still is not the case for Libido and ED).
And when I have bad phases I still feel 70% pre-fin - which is pretty ok and not too hard to handle.
I feel certain that Bupropion helped to speed up my partial recovery.
Libido remains killed. Erections are very weak.
- What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Mentals, physical and other sides: Pretty good, maybe a 70% recovery - if it last like this and I won’t fall back again. Let’s see. It has only been a month or a little longer, that I feel as good as I do right now.
Libido and erections still suck.
Libido is very low, no spontaneous erections. Wake up with erections but they are very weak.
What am I gonna do?
I will do absolutely nothing for the rest of July and probably for the rest of August if my status does not worsen again.
Just to see if my mental and physical status will become stable at a good level.
What am I gonna do about my sexual sides?
I don’t know. I’m afraid of anything that bears the chance of fucking up my partial recovery.
I’m able to study, go to concerts, travel and lead a great life again - I don’t wanna lose that again.
But no libido is no fun. So I’ll be patient for another 6 weeks and see if my libido maybe gets a little better on its own.
If so, I will continue to be patient.
If I won’t feel an increase in libido and erections, I will probably try some “soft” approaches like taking some supplements like Curcumin, fish-oil and so on.
What also made me curious is the story of those guys of you who are trying progesterone. Some people seem to have recovered or at least got better from it.
But as I said before: Right now I’m too scared to try some hormones or steroids or anything that could throw me back again.
Other strange things I noticed:
Alcohol:
In the phase of total exhaustion and depression in december, january and february - when I drank a lot of alcohol I always felt way better - never got worse. And by getting better I don’t mean getting tipsy and a little funnier like people do when they get drunk - but really getting better.
During drunkeness the brain fog cleared, anxiety and depression faded, I was motivated and felt powerful again.
Curcumin:
I tried it for ten days in october. During that time I felt a little better. Then I experienced another mini-crash, got scared again and stopped Curcumin. During that time I had one single morning when my libido and erection were quite good.
Same trial in december.
Took Curcumin for a little more than a week. Had one day of good libido. A few days later I felt like total crap again and quit Curcumin.
Dunno if those mini-crashes and/or the increase in libido where related to Curcumin. Could have been coincidence and the crashes would have come anyway. Maybe, maybe not.
Why do I tell you all this?
(because I’m sitting in the university library right now and needed to find a reason to procrastinate and)
because I wanted to share my experience with you. I know that everything I wrote has been written by other users of this forum already but maybe someone can get a use out of my personal report.
And if there’s more Germans on this forum who suffer from PFS: I’d like to get in contact. Just to share some experience or exchange information about doctors in Germany that have some expertise regarding PFS.
So, any Germans here?
To everyone: Feel free to comment or ask anything about my story if you wanna.
Crossing my fingers for all of us that someone will find a cure.
cheers