New Member Story: Latent Reaction to Propecia

Member Stories
#1

  1. Where are you from (country)? USA

  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 searach -

Propecia ED

  1. What is your current age, height, weight? 46, 6’, 185lbs

  2. Do you excercise regularly? If so, what type of excercise? Yes - Weightlifting, Rollerblading

  3. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? I try to eat a healthy balanced diet.

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

  5. For how long did you take Finasteride (weeks/months/years)? A little over 7 yrs

  6. How old were you, and WHEN (date) did you start Finasteride? 36

  7. How old were you when you quit, and WHEN (date) did you quit? 43

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

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

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

  11. How long into your use of Finasteride did you notice the onset of side effects? Appx 6 yrs

  12. What side effects did you experience while on the drug that have yet to resolve since discontinuation? Difficulty gaining and maintaining erections, loss

of sensitivity, loss of morning erections

Put an X beside all that apply:

Sexual
[ ] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[x] Watery Ejaculate
[ ] 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
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] Depression / Melancholy

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? Cialis 20mg, Daily Cialis, Levitra and

Too many supplements to name

  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)? At this point, no major hormanal or testosterone level changes

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

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

After six years of taking Propecia, everything seemed completely normal. When I finally started noticing that I was having trouble maintaining erections, I had every reason to believe it was a psychological issue. I was going through some trauma in my life at the time, and I assumed that was at the root of any problems. A couple of months shy of my seven-year anniversary (of taking Propecia), I had a defining moment. I found myself in a very sexual situation; one that would have normally had my penis completely erect without having to think about it. Instead, it remained flaccid. I didn’t care about the embarrassment. I was more concerned about what was going on with my body. I knew this was a physiological, and not a psychological problem. Propecia was the first possible cause that came to my mind, so I started tapering off the pill. The more I read about others’ experiences, the less sure I was that Propecia was the culprit. It seemed like everyone else noticed distinct problems within days, weeks or months of treatment; certainly not six years. My physician and the urologist he referred me to were both incredibly condescending and made no effort (other than the typical Testosterone test and a script for Cialis) to figure out the cause of my impotency. All blood tests came back normal (no low T, no diabetes or heart/arteries disease. Finally, I went to a urologist who performed a Doppler test on me (a test in which the doctor is able to observe on a monitor, the blood flow to your penis). The test confirmed that whatever is causing my ED is physiological, because the blood flow was clearly not normal. Once the urologist made that dertermination, he hurried me out of his office. He had no interest in discussing the possible cause. That was over a year ago . . . I am otherwise still in good health, yet still have ED. I can only guess, that for some reason, my body had a latent reaction to Propecia. Is there anyone else out there that did not experience symptoms until years after taking the drug?

#2

I took the drug for over nine years.
In the last two years, i started to develop side effects but the side effects came on gradually.

Whats your plan of action?
Are you going for any further tests?
Are you taking anything to help with blood flow, e.g. Cialis?

I would recommend checking your adrenals via a 4x daily saliva test:
gdx.uk.net/index.php?option=com_gpanel&Itemid=2&task=view&id=27

#3

It pisses me off when I hear more and more stuff about doctors ignoring our problems. I had the same issues with doctors, none the less it amazes when a doctor can actually see the problem exists and not bother trying to do anything about it or even it raising a question mark in his mind. Mind your uro’s are the same guys who regularly prescribe 5ar2 inhibitors to guys for BPH.

#4

It does me too BP, what I’ve come to accept is M.D.'s for the most part administer established treatments to medically recognized aliments/diseases. We’re out on our own for the most part, IMO for many years. There are a select handful that will pay attention to the research studies that we bring into appointments, but are they going to take time to read dozens to attempt connect the dots of the stuff we’re pouring over, no.

#5

Yup essentially we are. Although you would think they would at the least bring the problem up at one of their conferences and let others in the medical community know about it. Just shows you something about human nature.

I hate to see more and more people effected with this condition, but the truth is the more people get hit with it, the more attention we are going to get, maybe if someone wealthy and powerful gets effected with it at least we will have more funding for research.

#6

I was thinking that. We need more James Marshall stories lol. Celebrities are so concerned with their hair, you’d expect some cases to pop up about a celeb who got burned by trying to thicken up the mop. At least we have one journalist, John Peige. And we got a dedicated doctor/lawyer whose relative was hit. He’s a member here but I’ll keep his identity a secret.

#7

Thanks everyone for responding. I know it is cliche, but it really is nice to feel that you are not alone.

Noniman asked me a few questions . . . and I will answer them shortly. First, I also wanted to comment on the way doctors treat us. I have a couple of horror stories that I won’t even bother with right now. Instead, I will discuss the urologist who performed the Duplex Doppler Ultrasound test on me. He was very understanding and nice when I first met with him. I suppose he thought the problem was due to low T or just in my head. After the my blood tests came back normal and Doppler test displayed a problem with blood flow to my penis, he became a different person. When I asked him questions, he snarled out a useless answer (told me ask my Primary Care Physician) and left the room. My theory is that doctors are afraid of theories pertaining to our health (at least in the USA). Theories lead to lawsuits and aggravation for them. Where I live (in South Florida), I don’t think I could pay a doctor to tell me that Propecia is a likely cause for my ED. It opens up a Pandora’s Box that they want no part of.

Anyway, back to Noniman’s questions.
-Do I have a plan of action? Frankly, I am at a loss right now as to my next step. I feel like I am throwing darts blindfolded.
-Am I going for further tests? I would, if I could find a doctor that gave a sht.
-Am I taking anything to help with blood flow? What haven’t I taken? Let’s talk about the usual suspects. I find that Cialis and Levitra work, but with three problems: 1) Forget about spontaneity. You have to schedule your sex. 2) Like with most other drugs, your body becomes accustomed to it and will not work as well. Sometimes you have to lay off for awhile. Daily Cialis worked extremely well for one month. I felt like a normal person again. Now it only helps a little . . . while costing me $140.00/month. 3) In the USA, the drug companies love us, because this sht is insanely expensive and many insurance plans will not cover sex pills.
-Also for blood flow, I am taking Ubiquinol, Pycnogenol, L-Carnitine and an Arginine and Citrulline combo. I have also tried cayenne pills and odorless garlic pills. I will look under every rock and stone out there. At this point. I am not too proud to try just about anything that seems to make any sense. Although the more expensive it is, the more sense it has to make.

My question for you, Noniman (knowing that it took years before either of us were affected) is how did you come to the fianl determination that Propecia caused your problem? One of the things that has thrown me off regarding my symptoms is that my libido is as strong as it has ever been. It has never slowed down for a day. I always feel the blood rushing to my penis, but my penis does not get erect. It makes no sense when you consider I do not have diabetes or clogged arteries.

#8

I have pretty much lost what little respect I had for MD’s. Since most of them think quite highly of themselves and disregard others.

#9

Thats a simple question to answer:
The more propecia pills i took, the worse my symptoms became.

I noticed that i could not perform in bed with a hot chick that i had met. Pretty embarassing really. I told her that i was not feeling well, but i knew it was propecia.
My E.D. got gradually worse and worse as i continued to take more pills and then i decided that i had to quit the drug.