My fascinating fin story

Member Stories
#1

Hi all - I’m new, and I’m very excited to find this community. I’ll do the copy and paste thing, but I’ve got some really interesting (at least I hope) details that I’ll chronicle in #17. I think my story is typical in many ways, but what happened early on is pretty crazy. Here it goes:

  1. Where are you from (country)?

USA

  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

  1. What is your current age, height, weight?

5’11" 200lbs, 30 years old

  1. Do you excercise regularly? If so, what type of excercise?

a little of everything (cardio, weights)

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

very healthy overall, lots of lean protein and veggies

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

MPB/hair loos

  1. For how long did you take Finasteride (weeks/months/years)?

10 years

  1. How old were you, and WHEN (date) did you start Finasteride?

20

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

Haven’t quit yet, but might very soon

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

NA

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Propecia

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

1mg

  1. How long into your use of Finasteride did you notice the onset of side effects?

a few months, maybe 2-3

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

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

Mental
[ X] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ X] Extreme Anxiety / Panic Attacks
[X ] 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
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

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

Still on the drug as of now

  1. 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)?

  2. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

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

OK, here it goes…

Ten years ago I noticed just a little receding at the temples which freaked me out at age 20. I got Propecia prescribed pretty quickly after that. This was in June or so. At some time in September or October it hit me that not only was I deeply depressed (and about nothing in particular), but that I hadn’t thought about sex in quite a while (which was totally unusual for me up until this time).

I ended up seeing a doctor and i described my inability to get an erection (not completely unable, but it was very hard to do) and my loss of interest. He didn’t think it was testosterone, but he eventually decided to test it just to be sure. My testosterone came back very low, as if my body had stopped producing it. (but I do not recall any discussion as to whether the propecia could have been the cause).

I was referred to an endocrinologist who suggested putting me on a testosterone patch for a few months and then going off of it to see if that got my levels back. This actually did work. I went on it for 4-5 months and then off it for 3-4 months. I got tested and my testosterone was normal. But I remember that my sex drive had not come back. In fact, I remember trying to masturbate while I was on the testosterone patch and having an extremely difficult time.

The doc brought up the propecia and recommended that I try going off of it for 3-4 months to see if i got my sex drive back. But she didn’t suggest it as a possible cause of my testosterone levels dropping in the first place. So I went off the propecia, but my symptoms didn’t go away.

So here’s the interesting part…I had been a pretty heavy binge drinker from my teens up until the time I started taking propecia. But nothing unusual given how many college kids binge on the weekends. Needless to say, this loss of libido at age 20 was a bit traumatizing. I ended up falling into a decade of alcoholism. I was drinking very heavily on and off for the entire next year until recently quitting two months ago.

My libido improved just incrementally, but never returned to anything close to normal. because I’d tried coming off the drug initially, I assumed propecia was not the problem and that it was probably due to my drinking. Now that I’ve sobered up, I’m doing some analysis of my life and how I got here, and I’m realizing (with the help of this forum) that the entire thing may have been due to the propecia and it may not be reversible.

But yes, I’ve continued to take the drug this entire ten years because A) it seems to have slowed my hair loss considerable and B) I didn’t think that it was the problem.

I am now planning on quitting the drug, but I just saw the doctor today and got my blood tested again. I’m waiting to get those test back and I’ve been referred to an endocrinologist again. So I’m not going to quit on my own with those two things being imminent, but I’m almost certain that I’ll quit the fin.

That’s the short version of my story, but I just wanted to share it and hopefully get some feedback. It’s amazing to think what a nightmare this drug very possibly has caused for me. I’ve been more or less impotent from the age of 20 to the age of 30, and I’m fearful that even quitting may not fix the problem.

I really appreciate having been able to read some of the other stories that have been posted on this forum.

#2

Jonas,

Welcome to the forum. First, I’m sure one of the forum moderators will inform you not to post on the forum again until you quit the drug.

Regardless of what your Endocrinoligist tells you, the drug is destroying you in more ways than you can imagine. I tell you this, because I have been told by several that propecia could not cause these problems and your blood work looks fine.

I’m just trying to help you avoid some of the wasted time many of us have experienced with bad doctors that don’t have enough experiece with sides caused from propecia. Three of the best are dr Shippen, Chrisler and Jacobs. Unfortunately for you they are all in the NE part of the country.

You may want to consider weening off of the drug by gradually lowering the dosage over time. Many of us who quit cold turkey experienced a sort of crash where our endocrine system hormones drop to hypo levels.

You should refer to the main page that has list of recommended hormones for a blood test. There are many more hormones than just Testosterone to include on your test.

I do hope you quit and are able to contribute here on the forum. The more men the we can get to admit this drug has ruined their life the better we will all be in the long run.

#3

Thanks for that reply.

I apologize, I did notice that disclaimer right after I posted. Yes, I’m still on the drug, though I’m almost certain that I am going to quit soon. I actually see an endocrinologist on Thursday. I will try my best to lay out all of the details. I like the idea of weening off the drug. But I did try going off the drug for a few months in the early going. At that time I did not notice the side effects going away. I concluded that it wasn’t the drug, because all the literature said the symptoms wouldn’t last if the drug was discontinued. Of course I realize now that this was faulty logic.

#4

Jonas,

You have been on the pill for 10 years, it takes more than a few months for the side effects to go away. Forget what the literature states, for many the side effects will not go away. They persist years after using the drug.

Good luck seeing your endrocrinoligist. Be prepared to be told, “You’re perfectly healthy”, “propecia could not have caused this” This is the response most of us get. If the doctor doesn’t believe you, fire him and find a new doctor.

#5

Hi Jonas

Similar story with me, I’d advise you to ween off.

#6

Saw the endocrinologist today, and he recommended just outright quitting the drug and coming to see him again in about 10 weeks. Sounds like a plan. I asked about weening off and he said something to the effect of “there’s not much of a point because we really want to know if this is what’s causing your symptoms.”

So as of today I’m no longer taking fin. I suppose there is still a chance that my symptoms will go away, but I have a bad feeling that they will not since I tried this once before. But it’s certainly time to find out.

#7

Jonas,

If you expect the sides to go away in a few months, I think you’re setting yourself up to be disappointed. You took the pill for a very long time like myself and many others here. Just because you quit and the sides don’t go away, that does not mean propecia did not cause your side effects.

It’s certainly your decision to remain off or go back on, but your story in terms of the side effects you experienced, looks eerily similar to every other guy on this forum.

#8

Boston2009

I think the time on the pill is irrelevant. even guys with sides will usually recover within a few weeks. I know I did before stupidly going on again.

#9

Yeah, I don’t know if we know enough about the drug to know how relevant time spent on the drug mattered. It’s conceivable my sides will go away quickly, making me not really belong on this forum. It’s also conceivable they’ll never go away. But the medical community doesn’t even acknowledge that there could be a need for this forum since the sides go away in 100% of guys who quit the drug, right?

To be clear, I didn’t mean to suggest that I was expecting my sides to go away in any particular amount of time. I am just sure that it’s time to quit the drug and see what happens.

#10

One week off the drug, and if anything I feel like my sex drive has gone down from an already low state.

I know that it’s way too early to make any sweeping conclusions, but it sure the hell hasn’t sprung back into the picture with the drug out of my system.

#11

For many of us, me included, the real hell didnt start until weeks AFTER we quit the drug. So, you’ll have a few months of cautious waiting. Get bloodwork done before you go off it if you can. But I dont think anyone in here would advise you to stay on this poison another second.

#12

Luckfax - how long had you been on propecia and how long were were you off when recovered the first time?

What happened when you went back on it?