PROPECIAHELP: Persistent Finasteride Propecia Proscar side effects info & discussion forum

Hi Everyone,

We are worried that my husband's propecia use has affected our son's penis size. He's definitely on the smaller side, and I'm going to get him evaluated by a specialist to see if he falls below the normal range, and if so if treatment can be done. Father is normal. My husband has been taking propecia consistently for nearly 10 years. While I was pregnant, we maintained sexual relations, and were not using contraceptives. Was this a mistake? Should we have used condoms? Would the amounts of propecia in his semen affect the baby? Has anyone else on the drug for 10 yrs had baby boys with normal sized penis? I am absolutely devastated, I want my baby to lead a normal sexual life, not be ridiculed by mates or girlfriends. Can someone please let us know if you have ever heard of this happening before. Of course I am going to get my son tested to make sure he doesn't have any low hormonal levels or something. Aside from the very small penis, I don't see any other obvious signs. My husbands sperm count was normal (but on the very low end of normal...and depending on which doctor you talked to...some said normal, some said low).

If this was caused by propecia I will never forgive my husband. If others start coming out with similar stories then they will have a lawsuit to deal with. I'm so upset over everything and have an appointment scheduled this friday to be seen by a pediatric endocrinologist. I just pray that he is fine, and that some kind of testosterone treatment can make him bigger.


0) Where are you from (country)?US

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?35, 5ft19, 155lbs

3) Do you excercise regularly? If so, what type of excercise? yes, triathlons

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

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

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

7) How old were you, and WHEN (date) did you start Finasteride? 35

8) How old were you when you quit, and WHEN (date) did you quit? still on it

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

10) What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?PROPECIA

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

12) How long into your use of Finasteride did you notice the onset of side effects? no

13) What side effects did you experience while on the drug that have yet to resolve since discontinuation?
na
Put an X beside all that apply:

Sexual
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ x] 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
[ ] 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)
worried about effects on baby son

14) What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? no

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)?none

16) Anything not listed in the above questions you'd like to share about your experience with Finasteride?

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

So I realize the data out there was done on monkey's and rats and such, so no one needs to quote that information. I just want to hear it from real people who were on Fin and had baby boys. We all know that monkey's aren't always indicative of accurate results.....wasn't it thalidomide that was tested in rats and shown no side effects?

isnt penis size set during pubity? i know procepia can genitals not to develop correctly but i doubt it causes a small one. i guess u have compared it to other babies. one thing for sure is its not your husbands fault. he didnt create the drug and market it as safe. and u could have have insisted on a condom. be greatful he hasnt crashed because if he has you would also have no sex life and possibly be a widow.

If I had know this was an issue I would have insisted on a condom. It's his fault because he is too vain to go bald. If he wants to take all those risks, even though I told him he shouldn't take these pills, then he is at fault. When I was pregnant...I chose not to drink caffeine, alcohol etc....all because I knew those things affect the development of a baby. and I do blame myself, because I didn't look into it further. I just took his word that it was fine. I blame both of us, and I'm equally responsible for not researching into this drug further. When planning a pregnancy, both husband and wife should consider the medications they take, and now I feel so terrible that I haven't.

The genetic material that makes up rats and primates is fairly similar to ours. Similar enough that they are used in many different experiments to predict outcomes in humans. There is good reason to pay heed to those studies as they are HIGHLY pertinent here. That being said, it's absolutley scientically proven possible that Propecia use could have led to your son's problem.

Penis size is set during puberty according to androgen levels. Assuming there are not genetic defects as in AIS or inherited epigenetic defects.

I'd try to find a major clinic. Maybe the Mayo Clinic if you are close. Hopefully if you articulate the problem and the history there someone can point you in the right direction.

Oh, and get your husband off Propecia of course.

I wouldn't blame him, everyone here was mislead into thinking finasteride was safe by their doctors. He definitely should come off of it immediately thou.

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Pregnant women are not supposed to handle finasteride due to problem with genetalia development of unborn fetuses.

I'm not sure you will find the data you're asking for here. I suggest looking into the facts surrounding your husbands use of propecia and possible transmission to you during your pregnancy. Also check into labs that can test for propecia content in semen and have your husband tested to confirm is it is being excreted in his ejaculate. It may also be possible that he was touching the pills and then touching his penis or you which could transmit it especially if they were crushed or broken.

Try to gather all the facts you can before you start pointing fingers at your husband for your marriage's and son's sake.

I don't know why no expert took interest in this case. This is very important case which can show us alot.
if this little boy can go for gene tests and 5AR tests it will show if there is gene mutation.
This woman should be contacted and guided the right way, the results will benefit a lot here.

Hi, sorry to hear of your concerns about your baby boy. I sincerely hope that things will work out for you.

Have you addressed the questions you have to your Consultant/Pediatrician?
I would advise that you push for a thorough set of tests and discuss with your consultant about the following conditions:-
- 5 alpha reductase deficiency
- Klinefelter's syndrome
- 17 hydroxylase (17-OH) deficiency syndrome.
- 46,XY DSD, e.g due to abnormalities of gonadal development, testosterone synthesis defects, Persistence of Müllerian ducts syndrome

These conditions are rare but i would advise that your baby boy is checked for these conditions, in addition to any other tests that your consultant recommends.
Full details here:
http://www.endotext.org/pediatrics/pediatrics11/pediatrics11.htm


Hormonal tests should be performed, but depend on the presence or absence of palpable gonads as recommended here:
http://bestpractice.bmj.com/best-practice/monograph/868/diagnosis/step-by-step.html

No palpable gonads

In the absence of palpable gonads, the most likely diagnosis is CAH secondary to 21-hydroxylase deficiency.

17-hydroxyprogesterone (17-OHP) levels should be obtained and will be markedly elevated.

Electrolytes should be obtained and monitored closely, as salt wasting may take a few days to develop. High plasma renin activity in the setting of elevated 17-OHP confirms salt wasting in CAH due to 21-hydroxylase deficiency.

If CAH is suspected and 17-OHP levels are not markedly elevated, adrenal precursors should be further evaluated to look for more rare causes of CAH, including 11-deoxycortisol and 11-deoxycorticosterone to rule out 11-beta-hydroxylase deficiency.

Gonad(s) palpable

Testosterone and dihydrotestosterone (DHT): A high testosterone to DHT ratio suggests a 5-alpha-reductase deficiency. Partial androgen insensitivity syndrome is often a diagnosis of exclusion in a 46,XY patient when none of the tests are revealing. The testosterone may be elevated and, if so, facilitates the diagnosis. However, this is often not the case.

LH and FSH: These help evaluate the hypothalamic-pituitary-gonadal axis. Low levels in the first week of life do not necessarily indicate hypogonadotropic hypogonadism, and assessment at 2 to 4 months of life may be more revealing when there is an increase in LH and FSH levels physiologically.

ACTH stimulation test: This can identify a block in the testosterone biosynthesis pathway. It may also reveal abnormalities of glucocorticoid and mineralocorticoid synthesis (i.e., those with CAH).

hCG stimulation test: This helps assess the ability of the testes to respond to hCG and produce testosterone. The ratio of testosterone to DHT after hCG stimulation is a sensitive way to detect 5-alpha-reductase deficiency. The hCG stimulation test is also a good test to identify a block in the testosterone biosynthesis pathway and may be a better test than the ACTH stimulation test if a defect in glucocorticoid production is not suspected.

Mullerian inhibiting substance (MIS): This can be obtained to assess testicular function in a child suspected to have 46,XY DSD and in chromosomal DSD. MIS levels are age and sex dependent.

Spstriken

I have sent an email to wifeofM.
Lets hope she get can referred to a centre with expertise in 'disorders of sexual development'.
The centre should be able to arrange the proper tests that i listed above.

I hope she comes back with an update on how things progress.

I'm waiting right now for my son to be seen by a second ped endocrinologist.

I took him for an initial consultation and examination to a ped endo, and he doesn't believe that my son has microphallus. He attributes his small manhood to just nature, and does not think believe that this is a true case of microphallus. He said that it measures 3cm if you measure it right down to the bone, though he has a very big fat pad there (his weight is in the 93rd percentile). I'm not sure I'm completely convinced, yet he says that he has seen micropenis and that this is not it.

I'm still waiting for our second opinion (at the end of the month) because literature says that an average newborn penis is 3-3.5 cm, and my son is 11 months old (10 months adjusted since he was born a month early). I relayed my concerns, and said well if a newborn size is 3cm, then my son had a much smaller one than that when he was born and I'm still concerned that it's on the small side. No genetic tests were done.

On one hand, I'm not wishing for my son to have any diagnosis. Frankly, the thought of it breaks my heart, but I do wish for him to have a normal sized penis. I've seen other babies his same age in our family, even chubbier than him, and theirs seem much larger.

So at the moment, I'm waiting. It's hard because I don't want anything to be wrong with my son, but I also want to make sure that everything is examined. Aside from his size, he is completely normal in every way and his growth and development is perfect. I'm really praying that he really is fine, and that he will eventually outgrow it and that when he thins out and once he hits puberty, that things will become more proportionate.

In terms of penis size you wont know until puberty.

I remember when i was a child i could barely see mine, and it turned out normal.

I would undertake the tests Noniman suggested, to determine if there have been any abnormalities caused by the drug or not.

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good job noniman.