PhoenX story

Member Stories
#1

0) Where are you from (country)?
Austria

1) 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

2) What is your current age, height, weight?
23, 193cm, 83kg

3) Do you excercise regularly? If so, what type of excercise?
no

4) What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
normal

5) Why did you take Finasteride (hair loss, BPH, other)?
hair loss

6) For how long did you take Finasteride (weeks/months/years)?
3 months

7) How old were you, and WHEN (date) did you start Finasteride?
20 years - September 2008

8) How old were you when you quit, and WHEN (date) did you quit?
20 years - December 2008

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

10) What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
a generic, don’t remember which, maybe it was fincar

11) What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
I quarted a 5mg pill => 1,25mg/day

12) How long into your use of Finasteride did you notice the onset of side effects?
don’t remember

13) What side effects did you experience while on he drug that have yet to resolve since discontinuation?
While on the drug I just realised, that I had no erections and no libido.

After discontinuation I had no libido and no erections. I also suffer from fatigue. At the beginning I was sleeping the whole day.
Meanwhile I have morning erections. In the morning I can have sex with my girlfriend, but I’m not really horny.
Sleep is very important for my erections. I don’t have much drive to do things. Since I’m off I have no hobbies. I don’t have the energy for that.

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfullness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

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
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

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

15) 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)?

16) Anything not listed in the above questions you’d like to share about your experience with Finasteride?
An interesting phenomenon occured, when I was sick. I wasn’t eating three days in a row and did nothing but sleeping.
After those days I was fully recoverd for approximately one week, then every thing went back to post fin. Months later I was sick again and the same procedure had the same effect.

17) Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
There where three reasons why I took Finasteride:

  1. I read, that if you want to stop your hair loss, you have to start as soon as possible.
  2. I didn’t knew about PFS and thought I will recover anyway.
  3. I had hair loss in my familiy and my hair began to fall out.

I took Finasteride about three months. Maybe I didn’t noticed the side effects right away, because I was stressed at that time, but when my libido was gone I stopped immediately. I wasn’t horny anymore and had no erections.
I can’t remember if everything went back to normal for a short time. But PFS hit me hard. There was no connection to my penis anymore and lost the ability to have orgasms. I didn’t noticed any physical changes in penile skin though.
And i was tired. I wanted to sleep all the time.

I always knew that Finasteride was the trigger to my problem, but I didn’t knew about PFS until some days ago. I wanted to make a neurostress profile and I wondered if these neurotransmitters are influenced by the 5-alpha reductase. Then I found propeciahelp.com

I went to a lot of physicians and had no luck. I paid a lot of money for supplements like Q10, Vitamines and other stuff, but it was wasted money. Interestingly I came together with my girlfriend in the phase, when I had no erections, no libido and total tiredness^^
It wasn’t easy, but she loved and helped me.

The Fatique problem ist still there, but my erections have improved. I feel the connection to my penis again. Often I have morning erections and I can have orgasms. But I almost never feel sexual arousal. I also never feel aggressive and I’m rarely motivated to do things. I also have digestive disorders like gastritis and I’m prone to stress. I rarely have negative mood and if so, the reason is mostly gastritis or digestive troubles.

My plan for the future:

  1. Run every day
  2. healthy diet
  3. learn about PFS and supplements
  4. reducing the symptoms
  5. participate in studies
  6. … maybe one day: cure
    and most important:
  7. living a life

A word to the “victims”
Of course this pill is a poison that destroyed our lives and of course Merck should be sued for knewing more, then they said.

But we took this pills at our own risk.
We put that shit into our bodies.
Seeing yourself as a victim gets you nowhere. Thinking that you should have never taken finasteride as well.

i’m glad to be here with you guys
PhoenX

#2

Being glad to be here with us is stupid. This is one of the last places I want to be.

Saying we all took informed risks by taking 1mg Propecia for hair loss is false. The label suggests that sexual side effects will go away upon discontinuation of the drug. Looking at only ED, there was no mention of persistence of it after discontinuation in the USA until JUNE 2011. Europe got the notice approximately 2 years prior.

Merck’s product insert for Proscar lists more serious side effects than Propecia as well as shrinking the prostate. The entire explanation for mechanism of action for shrinking the prostate is missing on the Propecia label even though they both have a flat dose response rate.

To be responsible for taking a risk you need to understand the risk you’re taking. If Merck knew more than they said and suppressed this information you defeat you’re own argument for saying that someone who took Propecia took a known risk. How can someone know the risk when Merck was not sharing it on the label?

#3

Exactly. If most uros and endos seem to believe it can’t cause any long term problems, how the hell are we to know?

Not to mention there was no warning anywhere of mental or physical side effects.

I certainly wished I’d googled the drug before sides got blatantly obvious, but I made the decision to take it long before this forum even appeared. All I read was the ludicrously understated <2% get sexual sides that go away.

As for vanity, probably more guys take roids than propecia yet even injecting insane amounts of testosterone seldom leads to long term problems, and if it does they are easily manageable and not on the scale of our various sides.

There is no moral to this story, we were screwed over for nothing.

#4

Of course I’m glad to be here with you guys.
I took this 3 year long journey alone. Why shouldn’t I be glad to be with other guys who know, that it’s not just in my head?

I think you understood the meaning of this sentence quite well(or my sentence lacks knowledge of the english language^^ I speak german). I understand that you are frustrated.

Every drug has side effects and propecia is a relatively new drug with few long term knowledge.
We just made the mistake to be the test persons in the long term test, like we are with mobile phones(there are no long term studies proofing that mobile phones don’t harm our bodies). Every new drug has risks and if the drug is too young to know every risk, this is already a risk.
Thats my opinion. You can handle this like you want.

With the term “victim” I don’t mean it the legal way(of course we are victims in this context, if Merck knew more)

I mean it from a mental perspective. Running through this world with a victim mindset just makes me frustrated.
So I’m with you. Merck sucks. Finasterid sucks.

#5

There have been other that have felt much better during illness, including myself. Has anyone created a thread on this? surely it is worth looking at the body chemistry changes that take place when we become ill.

I think normal people also experience it, but it’s interesting that it has the capability to override whatever is causing our sexual issues.

#6

There is always risk involved regardless of the information and if the drug is a relatively new one like Finasteride there is even more risk involved, because there is no long term knowledge. Many people say that mobile phones damage our health. Nobody knows that excactly. Some people die after taking certain antibiotics because of allergic reactions. Yes, there is risk involved.
Thats my opinion.

I took this three year long journey alone and finally arrived here.
Why shouldn’t I be glad to be here with people, who know that this isn’t just in my head?

Interesting. I thought it was because I rested and did nothing. Seems to be important.

#7

You’re certainly entitled to your own opinion, but I personally can tell you that if Merck had a label that contained accurate information about the long term risks; One that included potential permenant sexual sides and a huge list of endocrine problems I for one would never have touched this poison.

I think you shouldn’t try to categorize people on this forum as not being victims. If a company knowingly misleads OR provides false information that leads to permenant health damage, how could that person not be a victim?

#8

wtf?

if was written about possibility of permanent damage, i will never tried this

i was also mislead from doctors that said fina was also a prevention treatm for BPH

#9

Sorry, I should have worded this better. I know this is a very emotional issue to all of us.

From the viewpoint of manipulation & deception: yes, we are victims
From the viewpoint of our mindset, way of thinking and how handle our further life: we have to decide this on our own

By victim i meant to have a “victim mindset”.
Having a “victim mindset” means to me: to feel hopeless(which makes my life worse); to feel bad because I have taken this drug(and this bad feelings make my life even worse); to be angry because someone deceived me(also feelings that make my life worse), to be a victim to bad feelings that prevent me from seeing that there is a lot of stuff that makes life still worth living, …

#10

I actually agree with this 100%. We’ve been dealt the cards. What happened to us is not right, and someone needs to answer for it. But its not to say we can’t maintain happy, meaningful lives. the “woe is me” point of view only adds to the anxiety and depression. Depression makes everything worse, period.

I have bad days and bad moments. But I’ve found balance through diet, exercise and mental strength that’s granted me a good life. This is a lesson learned, and although I might never see a cure that brings me back to 100%, I’ve found a place in my life where I can live content yet optimistic that things may still get better.

I can only speak for my own situation, my own body, and my own mind but I think there’s opportunity for everyone to lead more meaningful lives with just a little mental perseverance (combined with some lifestyle changes).