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Member Stories
#1

  1. Where are you from (country)? US

  2. 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?) I googled propecia side effects

  3. What is your current age, height, weight?
    38years old 6 foot 225 pounds

  4. Do you excercise regularly? If so, what type of excercise?
    Yes, I jog 3 days a week

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    mainly low fat and healthy

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

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

  8. How old were you, and WHEN (date) did you start Finasteride?
    1998, 25 years old

  9. How old were you when you quit, and WHEN (date) did you quit?
    2009 35 years old

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

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    propecia and finpecia

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    I did not get the side effects and my body did not crash until I went off finasteride.

  14. 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
[ ] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] 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
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[x] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[x] 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?
    different types of herbs and Vitamins, nothing has helped

  2. 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)?
    I have not had a blood test

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

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

I took finasteride for 10 years without any side effects. I then found this website. When I read the stories on this website, I went off finasteride cold turkey. My body crashed when I went off the drug and I have had all of the sexual side effects for the last 3 1/2 years. I have not had any recovery.

I have a couple questions for the members of this forum.

  1. How unusual is my case in that I was fine when I was on the drug but my body only crashed after I went off the drug?

  2. Do you think one of the reasons that the FDA or Merck does not pull the drug from the market is because there are perhaps thousands or millions of people that would be effected like me? They are fine when they are on propecia but their bodies would crash if propecia were pulled from the market and they went off propecia.

#2

Welcome to our unfortunate club…

Question 1. No, its not unusual… It’s very common I see it all the time on here where people were fine on the drug and only got destroyed when they came off it. For me I had relatively mild side effects while on it that got insanely bad when I got off.

Question 2. I think the only reason merck doesn’t pull the drug is because they are still making money off it and see the cost to benefit ratio of keeping it out there as still being favorable to them.

#3

why got worse after stopping propecia, maybe body forgot how to act with DHT, our body does not like DHT and turns agains it. Put this theory this way: many people have applied DHT cream to their penis after stopping propecia and got negative sides, their penis shivled up. On the other hand Many transgenders use DHT and get no sides, instead grow their clotris bigger ( just go on youtube and find many videos). your experience also gives hope that if we can overcome this behaviour maybe we will recover and we have not suffered any permanent damage.

#4

sorry for your bad luck. It is strange indeed. Maybe your body adapts to your hormonal state when you are on the drug and then when you remove the drug that hormonal state which it has adjusted to remains but as the drug is no longer there your hormones go haywire. And the new state is not sutable for your body. Have you done tests?

#5

I was also relatively unaffected while taking Propecia. If there were any sides I would say they were so minimal to the point they were noninvasive. I even took Dutasteride for a period of several months and had a very high sex drive and built muscle with ease. I too decided to stop taking Propecia/Dutasteride out of fear that years of use would damage me. How ironic that stopping the drug is what damaged me.

#6

Hi aaa123
you mentioned that you have shrinkage in balls and penis. May I ask when they started? if after stopping the drug, how long after stopping, one month two months etc?

#7

For about the first 3 months after I stopped I was completely impotent and the shrinkage happened. After about 3 months, I gradually improved to about 50% functional. I have remained at 50% since then. I have not taken any blood tests. My side effects have been mostly physical and I have not had the severe mental effects that some of the members on this forum have had. I know that about 5 million people use propecia. Merck makes 500 million a year off this drug and is doing a cost benefit analysis in their decision to keep the drug on the market. However, it might be useful for them to be aware that there are perhaps millions of people on propecia right now with no side effects that could possibly become plaintiffs in the future.

#8

So your impotence started right after stopping the drug but not while on the drug? because you mentioned you had had not sides while on the durg? please clarify this.

#9

What I don’t get is how someone can have those severe side effects and not have ANY blood work done for 3.5 years. If the symptoms are as severe as you describe them, wouldn’t you try anything to solve the issue? That, however, is kind of hard if you don’t even know the exact response of your body with regards to hormonal changes from quitting Finasteride.

Before you do anything else: get blood work done!

And THEN act accordingly. You have to know what 's out of order before you can work on fixing it.

#10

I had no side effects while on the propecia. All of my side effects started after I went off propecia.

Multispeed,

I have been reading the posts on this forum for 3 and a half years. I have not read one story about a member who had blood tests done and went to a doctor and was cured by a doctor. If we are in fact insensitive to androgens, it does not matter what our blood work says.

#11

It’s true in the past many people were urged to get tests done to develop knowledge in the condition among people here. But apart from consistentencies shown in many of us… 3adiolg, 5AR urine metabolites and vitamin d… There hasn’t been much to show from these tests. And nothing that has lead to a cure as of yet

#12

thanks alot man. This is the behaviour that makes me believe our body has developed alergy or autoimmune agains our own DHT, because this is the obvious factor which changed during and after propecia use.

#13

@spstrike

When our cells becomes hypersenitiv to DHT, they wil do a reaction, you can compare to a autoimmun reaction, but it not related by the immunsystem. We dont have any antibody against DHT. The cell itself is hypersensitiv to DHT even this depents on the tissu, whre the 3 subtypes of 5AR are expresed and on the AR-level.