A different story

Member Stories
#1

  1. Where are you from (country)? Spain

  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?) Google

  3. What is your current age, height, weight? 36

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

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

  6. Why did you take Finasteride (hair loss, BPH, other)? Check 17

  7. For how long did you take Finasteride (weeks/months/years)? About 2 years

  8. How old were you, and WHEN (date) did you start Finasteride? 32

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

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

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

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg and 5mg

  13. How long into your use of Finasteride did you notice the onset of side effects? Check 17

  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
[ ] 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
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[X] 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? Nothing

  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)? Hormonal profile ok.

  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 will try to summarize it.

I was taking the 1mg doses for baldness during two years with no sides effects, suddenly I started having such strong erections which lasted for hours (sometimes more than 3 even If I masturbated several times). They were especially strong and sensitive overnight not allowing me to sleep every night. I had hypersensitivity in my penis and get erected with the minimum contact with anything. Also my pubic hair started growing faster and thicker than ever. I never though this could be related to finasteride but just in case I stopped taking it, but nothing changed.

After one year an urologist said it could be recurrent priapism and prescribed me 5mg per day temporally to reduce my erections. I did it and after aprox 35 pills suddenly I lost my erections, the sensitivity of the penis (now it’s numbness) and the majority of my pubic hair, also my beard started growing much slower and thinner than before, and I have not had a pimple during this last year.

It has been more than a year that I lost my sexuality. Nowadays I think I could have an special sensitivity to finasteride, maybe the first time produced an “overreaction” to androgens when I took the 1mg doses (I have found other people with this possible strange reaction to finasteride, for example user “Woody” in this forum), but of course I do not know if it was due to finasteride or not. And then I lost the sensitivity to the androgens with the 5mg doses (the usual adverse side effect of the drug). My hormonal profile is normal before and after the treatment.

A "different" story
#2

Hi guys,

I know this has been discussed in the forum but I would like to give mi opinion due to my personal experience.

I think that the drug that killed our sex drive MAYBE could improve our symptoms.

  1. Why do I think this?

    1.1. I developed recurrent priapism when I was taking propecia for hair loss after two years of treatment. I have found other 3 persons with this same problem with finasteride (one in this forum), and also 1 case in the FDA approval of the drug for AGA (1 case within 1.500 patients is much more than you see this condition). I think in accordance with the up regulation or hypersensitivity of the ARs in a low DHT environment it could happen because the ARs amplifies too much and you become overactive to androgens.
    1.2. I have found that in some finasteride/dutasteride studies people that get ED and continue taking the drug solve this problem overtime. In this study that makes a revision of the different studies with finasteride (onlinelibrary.wiley.com/doi/10.2 … 05025/full -->I know it has a clear tendency to minimize its effects) in the conclusion says: “This percentage of ED would seem minimal, and it is also noteworthy that this adverse event diminished by half over time in men taking finasteride (Stoner, 1994; Roehrborn et al, 2004; Moinpour et al, 2007). In conclusion I think the ARs could be more tended to re-regulated in a lower androgen environment rather than in a normalized context.

  2. What do I think could improve our situation?

    2.1. Taking a low dose to reduce DHT again, for example 0,1mg (and try to upregulate the ARs) in a re-new low dht environment (upregulate = more efficient, who knows?).
    2.2. Very gradually reduce the doses in a way that the ARs do not auto regulate lowering its signal in a massive return or DHT. We know that DHT levels declined significantly by 14.9%, 61.6%, 56. 5%, 64.1%, and 69.4% with 0.01, 0.05, 0.2, 1mg, So I think nobody in this forum has made a real taper off. We would require an accurate dose of the drug (-0,005 from 0,05 each week ¿?) that we cannot get from the 1mg pill.

I know it would be risky but maybe it is an option to take into account. If I had the medical support and the proper dose to do it I would be willing to try.

What do you think?

1 Like
#3

Hi,

I have received a private message and I would like to respond to it, but I do not have this section activated. Could you please authorized me this section?

Thank you

#4

Hi,

I would like to tell you I was visiting a geneticist in Spain to know his opinion, because the urologist can not give me any explanation. He told me that as I have all the symptoms of a secondary hypogonadism but my hormonal profile is ok, he thinks a possible theory is that the signaling of the ARs were modified in some way with finasteride. I told him about taking again finasteride and he strongly recommend me not to do it because I could be more sensitive to it now, also to a minimal dose, so I have rejected that possibility.

As I told you a user (vincentv) sent me a private message, I would like to respond him because I need to talk about this problem with somebody. Please if It is possible authorized me the “private message” section, whether not, could you send “vicentv” my mail to be able to contact me?

I really appreciate your dedication in this forum and the coordination with the PSF.

Thank you,

#5

Hi,

Since january of this year my father is suffering severe muscle pain and lost of muscle mass, also a severe depression. The doctors does not find a reason to this disease. I am having muscle pain these weeks so I thought if maybe my father could be taking finas.

I called him and he told me he took dutasteride some days for the prostate (maybe beetwen octuber and december, he does not remember exactly the dates), but he was not feeling ok and he stopped taking it. Of course I think his suffering is coming from duta, and we could have a genetic predisposition to PFS. Hard to believe this is happening.

#6

I am starting to believe this has something more to do with the AR as when I am good with great diet etc my pubic hair grows thicker erections better and when I am bad it thins out sometimes to the point where it is all gone shit erections. Right now I have been taking epitalon and it has thickened up a bit. I know it sounds crazy but I dream of the day when I have erections and sensitivity in retrospect would you prefer to have done nothing and lived with it now that you have this awful condition ?
I believe your story and others like it really point to this being the source of our problem I wish there was a way to get androgens working properly again, that is the key.

#7

Of course I regret to have taking the 5 mg doses everyday . When I had the strong erections the main problem I had was the disconfort for sleeping but I felt completely healthy and happy, and sex was amazing, for the strong erections and for the hypersensitivity that I had.

#8

Hi,

Based on the theory of the silenced androgen receptor and the similarities with the androgen ablation syndrome in prostate cancer I would like to share a thought.

Some prostate cancer does not respond to androgen ablation, where AR overexpression is found maybe allowing for the body to respond to a minimal amount of androgens. In some of them after the withdrawal the tumor get better (lower PSA), maybe due to a silencing of the AR similar to our case (in some studies I have read this happen in the 30% of the patients). In others the situation does not improve after the withdrawal (¿the AR auto regulate properly and respond to androgens?) and the tumor keep growing.

So in the patients that do not get better after the withdrawal and there is no other therapies to apply (not sure about this), as doctors think that androgen ablation does not work for them, I think that based in our experience another treatment could be to go in and off of androgen ablation several times, looking to force a silencing of the AR with various sharp decrease and increase of the androgens. I think it would be interesting to see if it works and help people to live longer, and it could show the impact of the withdrawal in the AR signaling.

1 Like
#9

i think your geneticist is right. there is a genetic component to this problem as there were also some brothers who developed pfs here

the cure for the antiandrogen resistent androgen receptors, developed as a treatment resistance for in prostate cancer is actually an hdac inhibitor. that changes its epigenome and resensitizes it.

there was overexpression of AR found in pfs penile gland which could account for lowered AR sensitivity too.

so if only we knew the results of the study, we could find a way to diagnose ourselves and try some medications.

#10

Hi everyone,

I would like to share my “strange” story with finasteride because I think it could contribute with some interesting information. I will try to summarize it.

I was taking the 1mg doses for baldness during two years with no sides effects, suddenly I started having such strong erections which lasted for hours (sometimes more than 3 even If I masturbated several times). They were especially strong and sensitive overnight not allowing me to sleep every night. I had hypersensitivity in my penis and get erected with the minimum contact with anything. Also my pubic hair started growing faster and thicker than ever. I never though this could be related to finasteride but just in case I stopped taking it, but nothing changed.

After one year an urologist said it could be recurrent priapism and prescribed me 5mg per day temporally to reduce my libido. I did it and after aprox 35 pills suddenly I lost my erections, the sensitivity of the penis (now it’s numbness) and the majority of my pubic hair, also my beard started growing much slower and thinner than before, and I have not had a limp during this last year.

It has been more than a year that I lost my sexuality. Nowadays I “think” I could have an special sensitivity to finasteride, first at all it produced an “overreaction” to androgens when I took the 1mg doses, maybe to compensate the lack of DHT? (I have found other people with this strange reaction to finasteride, for example user “Woody” in this forum). And then I lost the sensitivity to the androgens with the 5mg doses (the usual adverse side effect of the drug). My hormonal profile is normal before and after the treatment.

The special consideration is that the first time it leaded me to overreact to androgens, so I think the AR (or whatever) can be modified in the positive way, I mean, if it happened once it is possible¡¡¡.