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Old 01-25-2012, 07:25 PM   #1
blakes33
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Default 10+ years of Propecia Use?? How many on this board - Your Experience?

Just wondering how many other men are there on this board who have used propecia 10+ years (especially interested in those who have been on it since it was released)?
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Old 01-29-2012, 09:16 PM   #2
blakes33
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It seems that maybe there are NOT many men who have been on the medication for 10+ years so let's say if you've at least been on it for MANY years (the more the better).

Questions for Long-Term Users (as it applies to many years on the drug):

1.) Has the medication worked or did it lose effectiveness after x number of years? Have you kept ALL your hair after MANY years of use or have you lost some?

2.) Have you had any side-effects? If so, have they been with you since the beginning or have they onset in later years of use (after long-term)

3.) In light of the new mounting evidence/information about men ending up with permanent sexual dysfunction - are you concerned about remaining on propecia indefinitely?

4.) How long do you plan on staying on the drug?....another 10 years, 15 years..? This is very important since I have always thought it not prudent to be on a hormone-altering drug (even without side-effects) for the REST OF MY LIFE!! At what point might you stop the medicine?

6.) How aggressive was your hair-loss when you started propecia?

7.) Have you stopped propecia at any point and if so, for how long? Did you lose hair during this period?
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Old 02-01-2012, 02:17 AM   #3
darkshadow
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Default Started when it came out

I was roughly 20 I think and in university when my hair loss hit. I never thought in a million years I'd lose my hair as my dad has a full head. I lost a good deal of my hairline in just a few months, so much so that all my friends noticed. I even had to shave some of the strays just do they didn't draw attention to the fact that some used to be there.

Thankfully Propecia had just come out, and I managed to get myself a prescription.

1.) Has the medication worked or did it lose effectiveness after x number of years? Have you kept ALL your hair after MANY years of use or have you lost some?

It definitely stopped it right away. In fact, one thing I noticed while the hairloss was happening was that my head itched and tingled. After a week on propecia that stopped.

I've maybe had some slight progression these last few years, maybe 1/4" - 1/3" off my hairline, but it still looks not bad. Haven't had any loss in the vertex or any real thinning that I can tell. In the meantime, a lot of my friends have gone from a full head to hardly any in the last 14 years.

2.) Have you had any side-effects? If so, have they been with you since the beginning or have they onset in later years of use (after long-term)

I had testicle ache off and on for the first year, but that stopped. I also had a period of impotence when I was 25 years old, but I was never sure if it was the propecia or just my nerves in general at the time. I gave up propecia for a few months, and managed to get the old pecker working again. Started up propecia after that and didn't run into the same issue again.

3.) In light of the new mounting evidence/information about men ending up with permanent sexual dysfunction - are you concerned about remaining on propecia indefinitely?

No, not really. I've gone off and on propecia for a few weeks here and there and I do notice a slight bump in desire when I'm off of it. So I can't see that not being the case if I ever give it up permanently.

4.) How long do you plan on staying on the drug?....another 10 years, 15 years..? This is very important since I have always thought it not prudent to be on a hormone-altering drug (even without side-effects) for the REST OF MY LIFE!! At what point might you stop the medicine?

I never really imagined I'd be on it this long, it's just sort of something I've kept doing. If I were to have a kid, I'd probably stop it for a while just to make sure my hormones were back to normal during conception, maybe even up until pregnancy. But outside of that, it looks like there are some promising treatments on the horizon, so I just look at it like buying time until some of those are ready.

6.) How aggressive was your hair-loss when you started propecia?

Very. I probably went from a THICK NW1 to somewhere between a NW2/3 in a few months.

7.) Have you stopped propecia at any point and if so, for how long? Did you lose hair during this period?

Hard to say. Nothing major. But I've definitely slacked off on propecia over the last three or four years, often stopping for a week at a time, or skipping a few days here and there. My hair is probably a bit thinner than it once was, and my hairline has probably receded another 1/4" or so. But for my age it doesn't look too bad.

In truth, the thought of losing my hair at age 20 was horrible. There were cute girls, lots of jocks, and I had enough stress going on in university. Had propecia simply helped me get through university, it would have been a godsend. Which it did, and it got me to almost my mid thirties now. I obviously don't want to lose anymore hair, but at this point I wouldn't be the only guy my age so it wouldn't be as horrible as losing it when I was 20.
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Old 02-07-2012, 01:16 PM   #4
marikeo
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Quote:
Originally Posted by blakes33 View Post
Just wondering how many other men are there on this board who have used propecia 10+ years (especially interested in those who have been on it since it was released)?
I have been using Propecia since 1997. My experience has been positive but not lasting necessarily.

After 2 years on Proscar 1.25mg/day my hairline has recovered considerably.

After 3 years I began to lose ground again.

After 4 years I increased the dosage to 2.5/mg day. This helped slow down the loss rate but I was not able to reverse loss as I had originally.

After 7 years I increased to 5mg/day. As with the previous increase, the loss seemed seemed to slow but I had no marked improvement.

This year I moved back to 2.5mg/day. I am concerned about using the drug at such a high level for so long. I did experience a shed from doing this after a couple of months, but I have again stabilized.

Bottom line: In my experience, and most I know who have used this drug, you will receive benefit, but over time it will not arrest your hairloss.

I would also suggest you start at the lowest dose (e.g. propecia) and work your way up. Make sure your Dr. knows what you are doing.

Good luck!
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Old 02-07-2012, 04:05 PM   #5
ryan555
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I was on Propecia for about 12 years and I stopped taking it two years ago due to an unrelated health condition.

1) The medicine worked for me the entire time I was on it. I kept all of my hair the entire time I was on it and even regrew most of my juvenile hairline.

2) I had a few side effects that I didn't even recognize as such until after I stopped the drug and things changed. I had a couple bouts of weak testicle pain throughout the years which were probably due to the drug. I lost morning erections somewhere along the way and had slightly weaker erections, but again I wasn't even aware of it. I also had less body hair while I was on it. Finally, I had a weaker urine stream when I was taking it. All of these side effects went away completely within a couple of weeks of quitting the drug.

3) I was never aware of the talk of "permanent side effects" and probably would never have become aware had I not stopped the drug and started looking at hair loss forums again (because I never thought about hair loss once the entire time I was on the drug). If I had been made aware, it probably would have freaked me out for no reason at all. As it turned out, the side effects I had on the drug were not bad enough to make me think twice or to even associate them with the drug and everything went back to normal when I stopped. If I had my choice, I would take the drug again and live with the side effects over having to deal with hair loss again. Unfortunately, it's not an option for me right now due to my other health issues.

4) I always thought I would just stay on the drug until a better solution came along. I had never heard of any issues with the drug and I never went online to seek out reasons to stop taking it.

5) My hair loss wasn't that aggressive when I started at 19 or 20. In retrospect, I may have just been developing a mature hairline but there was nobody on the internet to explain that concept to me. I've lost about a half inch of my hairline since I stopped the drug almost 2 years ago but that may not have happened until my mid-thirties anyway. I guess I'll never know.

6) Like I said, I have lost about a half inch off my hairline since I stopped. It's now in the place of a proper mature hairline so it doesn't look very receded, but the frontal core has thinned out some as well so I know I will continue to lose hair at some rate. I went through a lot of shedding after about six months off the drug that lasted for a few months. Now, I don't seem to shed very much at all but I still notice my hairline getting a bit thinner. I am also doing regular PRP treatments, low level laser therapy, taking some hair vitamins, and using some special shampoos so that could be slowing down the process a bit.

I think there are a lot of guys out there getting very freaked out for no reason. I don't deny that a few guys get persistent side effects from the drug, although I don't think it's fair to claim "permanent" side effects until men have lived with the condition for a really long time. There are many drugs that take years to recover from but that doesn't mean they cause permanent side effects. And I doubt that any men with minimal side effects while on the drug are at risk of long term issues after stopping it.

As a little side story, I went online a day or two after I stopped Propecia to read about any possible issues I might face and I freaked out when I read the horror stories. I decide to contact Dr. Alan Jacobs in New York who has dedicated quite a lot of effort to treating men with post-finasteride issues. He told me a few interesting things. First, he acknowledged that he has a real "selection bias" because he only hears from men with side effects and that he believes that it is a very small minority of men who have persistent issues. Second, he said he thought I could go back on the drug if my other health issues resolved so clearly he did not feel that the drug was inherently dangerous. Third, he said that most men he saw did recover after some time off the drug and sometimes some hormone therapy. Finally, he said he thought that a lot of the men contacting him had other issues that were contributing to their problems.

I can tell from all the posts you've made that this is something that is consuming a lot of your energy. I understand this because I had quite a bit of anxiety after I stopped about how much hair I would lose. My advice to you is to either re-start the drug and stop reading horror stories or get yourself on a new hair loss regimen that does not include propecia and figure out how to deal with whatever hair loss is in the cards for you.
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Old 02-21-2012, 08:19 PM   #6
blakes33
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Thanks for your response Ryan. It is encouraging to know that Dr. Jacobs believes it is only a small percentage.

I'm glad to hear from other guys who took the drug long-term like me and did NOT suffer these terrible issues. Thanks for the encouragement.

Your are correct - losing hair rapidly so a decision to get back on would have to be sooner rather than later!! I'll post below my full experience.
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Old 02-21-2012, 08:25 PM   #7
blakes33
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Thanks for all the responses so far. Since I started this questionnaire I need to jump in and answer...

Quote:
Originally Posted by blakes33 View Post

Questions for Long-Term Users (as it applies to many years on the drug):

1.) Has the medication worked or did it lose effectiveness after x number of years? Have you kept ALL your hair after MANY years of use or have you lost some? 13 years and propecia has kept my hair at about 90% of what is was when I was 21 and started losing it - AMAZINGLY effective!!

2.) Have you had any side-effects? If so, have they been with you since the beginning or have they onset in later years of use (after long-term)
No, I was a sex champ on the drug since the day I started with nothing BAD to speak of the entire time I've taken it except.... the occasional testicle ache, less body hair (back hair went away after several years on the drug - good thing) and loss of morning erections (which I didn't consider a problem). I had some side-effects that started AFTER STOPPING the drug (see below)

3.) In light of the new mounting evidence/information about men ending up with permanent sexual dysfunction - are you concerned about remaining on propecia indefinitely? Yes, very concerned. I am not on it now - have been off 14 weeks but am now seeing just how well the medicine was keeping my hair. So, I WANT to believe this information is either false or doesn't apply to me but I would be lying if I said I am not concerned.

4.) How long do you plan on staying on the drug?....another 10 years, 15 years..? This is very important since I have always thought it not prudent to be on a hormone-altering drug (even without side-effects) for the REST OF MY LIFE!! At what point might you stop the medicine?
I always figured at some point I would stop - like when I got OLD, you know like in my 30's (LOL), or when I got married and had kids... Uh, it doesn't work that way - it's very difficult at ANY POINT to just say "OK, now I'm ready to lose all my hair within the next 6 months"

6.) How aggressive was your hair-loss when you started propecia?
Very - I believe I would have been bald by 25 or at late twenties at the latest.

7.) Have you stopped propecia at any point and if so, for how long? Did you lose hair during this period?
This is where it get's interesting and concerning for me. No problems to speak of the 13 years I have taken the drug. However, when I quit I was fine for the first 4-5 weeks (morning erections returned and no change in sexual function/libido). But - at around week 5 I began having terrible testicle pain and lower groin pains. Went to see a urologist - the Director of Urology at the Emory Clinc (also Associate Professor at Emory School of Urology and Director of Emory's Urology Residency Program) who said he thought it might be my prostate but could not explain the testicle pain. He said it was common to see scar tissue in the penis of long-term users of finasteride but didn't see any in mine. He also told me to EXPECT some changes or slight difficulty as my body would undergo a hormonal shift in the coming weeks. At around week 9 THANK GOD the pain subsided. The only other issue I experienced was sudden and acute dry eyes and moderate blurry vision at around week 7. The dry eyes/blurry vision is really the only side-effect that is still with me now at 15 weeks out.
I would like to restart the medicine but what is concerning to me is that I never had any problems on propecia - it was only after I stopped the medicine that some of these began. Obviously they are not too terrible but it concerns me that I developed ANY new sides after stopping. So I got away (mostly) clean and body recovered the first time - what if I go back on and am not so lucky the next...

Just a side note - that same doctor just so happened to be attending a conference in Miami two weeks after my inital visit on finasteride and potential long-term problems. He said he would contact me afterwards to let me know the findings and he did. He said "it appears that this condition is real but seems to be limited to a small number of men. The issue is that it is new and there are not studies yet to show what the causes are. We should know more what is causing this in men as time goes on and more studies are conducted."
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Old 02-21-2012, 08:30 PM   #8
the_charger
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Your doctor said it was common to see scar tissue in long term finasteride users? I've never heard of this before.. You should inquire with your doctor about this to see where he got this information!
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Old 02-21-2012, 08:49 PM   #9
blakes33
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Quote:
Originally Posted by the_charger View Post
Your doctor said it was common to see scar tissue in long term finasteride users? I've never heard of this before.. You should inquire with your doctor about this to see where he got this information!
Charger - I did ask about the scar tissue (as I had never heard of this before either). It was from his clinical experience over the years with his patients.
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Old 02-21-2012, 10:07 PM   #10
sanook
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I'm 29 and I've been on finisteride for about 3 years.

1.) Has the medication worked or did it lose effectiveness after x number of years? Have you kept ALL your hair after MANY years of use or have you lost some?
It's slowed down the hair loss for me, but i've continued to lose it gradually. It's effectiveness has remained consistent since it first started to kick in within the first year of taking it.
2.) Have you had any side-effects? If so, have they been with you since the beginning or have they onset in later years of use (after long-term)
Distinctive side effects for me:
  • Sex drive is reduced but nothing major (I can still go a couple rounds per day).
  • Often i'll wake up once or twice throughout the night and just generally don't get a good solid sleep.
  • Gained noticable weight around my belly and hips.
  • Skin is more sensitive (itches a lot more after taking a hot shower and i get minor rashes etc.)

I think it may have made these existing problems noticeably worse for me (but not severely worse) :
  • Anxiety
  • Depression
  • Less social
  • Lack of energy

It's hard for me to pinpoint exactly when each of these side effects emerged over the 3 years. Some weren't as obvious at first. I also don't know for certain if they are related to the drug, as things like weight can change naturally as you get older... please consider them observations whilst I've been on the drug.

3.) In light of the new mounting evidence/information about men ending up with permanent sexual dysfunction - are you concerned about remaining on propecia indefinitely?

Yes I'm concerned, but i'm not freaking out. As far as i can tell it hasn't caused any major permanent damage to me over the 3 years I've taken it. I intend to stop it within the next few years as I'm confident there will be a cure available soon. I certainly won't remain on it indefinitely.
4.) How long do you plan on staying on the drug?....another 10 years, 15 years..? This is very important since I have always thought it not prudent to be on a hormone-altering drug (even without side-effects) for the REST OF MY LIFE!! At what point might you stop the medicine?
5 Years tops.

However it should be noted I'm going to have a procedure with Dr Gho this year and if this works well I will stop the drug altogether.
6.) How aggressive was your hair-loss when you started propecia?
My hair loss was relatively slow, but it was noticeable. I've heard stories of people losing more or less all their hair in a year or 2... I'm certainly not that bad.
7.) Have you stopped propecia at any point and if so, for how long? Did you lose hair during this period?
I recently went overseas for 3 months and decided to stop it to see how much difference it made. I noticed most of these side effects subsided considerably apart from the weight gain.

I did shed substantially more and started to freak out around the 3rd month. So I decided started to start taking it again. I'm now trying to combat a lot of these side effects with a much better diet and exercise.
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