A normal guy who went through this and "sort of' ok now

Member Stories
#1

I’m in my late 30s, and was on finasteride (propecia) from 2000 until 2010. I want to tell this story to all the people out there who may be ‘silently’ watching these boards and are looking for a ‘normal’ story about this.

I started losing hair in massive amounts at 18. So I started the medicine on the advice of my doctor. It worked very well for the hair… but what propecia did to me basically was ED. I developed very lousy function but I thought it was good enough, and initially it was on and off, which made it hard to realize that there was something wrong. I got into a marriage where sex actually wasn’t an issue because it quickly became a terrible marriage (and probably, the dysfunction was not even noticeable it was so bad, even getting into this marriage. This may sound bizarre, but it happens folks). But then after that ended, I realized that I had a major problem. I had had no morning erections for years, but thought this was normal aging – that this was something that only happened in your teens, (yup, pretty dumb) and since I started the medicine at 20, I really didn’t have the perspective about this. Likely I was also in some sort of denial. Anyway, I went to a urologist and told I had the function of a 70-80 year old man. (in my early 30s). He told me it was due to the propecia. He started me on cialis 5mg daily. My hormones were normal.

I the medicine every day. It took 8 months for things to ‘wake up’ to the point I could actually have sex. Those 8 months were a waking nightmare. I was definitely on the verge of suicide. But, I threw myself out in the dating world and had disaster after disaster as I kept ‘testing’ the equipment. When you’re on the verge of suicide… the embarrassment stops being a problem. I was determined to get myself well, or die trying.
Finally…things turned around.

Yet, if I stop the cialis – I lose my function after about 1 month. So I’m on it permanently. And most creepy of all (to me), my hair never started falling out again.

I am remarried, kids, and a healthy sex life. Yet in the background is this issue. Interestingly, my father took the medicine at the age of 60 and also soon after irreversibly lost his function (and no effect of cialis/viagra etc).

I personally believe that many of the other symptoms may be related to the massive depression that accompanies the realization that you have destroyed a major part of yourself by taking a medication like this, but its just my opinion.

Bottom line – the long term effect of this medicine is real, and I don’t think i’m a crazy person who wants to be sick or has given up on life here (which is what I think many people think of many people suffering from this). I think even after long term propecia use, I think many of us can regain partial function with long term daily cialis use, but it won’t be like it was before. There are theories on how cialis daily can have a long term beneficial effect in terms of blood vessel function, and I think these likely true as there seemed to be one for me. The hardest thing is sticking it out until things come back online.

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#2

Cialis/Viagra can cause blindness and loss of hearing or tinnitus. It’s not a safe drug, the chance is low, but the chance of finasteride is low too.

Also don’t be surprised if your kids end up having some sort of genetic condition due to your finasteride use.

#3

they are fine. thanks for the concern.

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#4

Thanks for posting. It’s good to hear that you are able to live a good life. I’ve had some benefit taking Ciallis etc, but haven’t really thought about the 5mg a day option. I think that’s it’s best to try and find what helps in the meantime until we know more from research and new treatments. I understand what you mean about the psychological impact of pfs, which is very difficult to deal with and makes the symptoms worse.

#5

Genetic conditions aren’t always noticeable, they may appear later in life.

I just think it’s irresponsible to have kids after having PFS. Whether you knew it or not you gambled with your life and now you’re gambling with the lives of others.

#6

There’s no evidence of that either scientifically or anecdotally at this point, so I don’t think it’s considerate to be alarmist or chastising regarding his children. He’s reporting a very mild case in just having treatable ED, and seeing as several quite severe cases have had kids who have been OK, I don’t think it’s a good idea to worry someone with no basis. It could be upsetting.

Finasteride is not mutagenic and what is being indicated by the scientific direction of PFS (changes to gene expression) could very likely be removed by the egg in the zygote stage if it got that far, as methylation is (largely) stripped at this point to put the epigenome in a ‘reset’ totipotent situation.

Ppcia, glad to hear you’re able to live a full life and you seem to be able to manage your condition with Cialis.

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#7

I think it’s a good idea to be worried. The ED isn’t the issues here, the stuff makes your sperm watery which isn’t normal, the safe bet is to just not have children. It’s actually inconsiderate to just ignore the problem and have kids anyway.

#8

I am not worried. I have a very solid understanding of the biology here. And you can’t live your life in worry.

#9

OP congratulations on feeling better and becoming functional once again.

There’s nothing proven on passing down PFS to your kids, or genetic diseases derived from pfs. No need to be worried about this, especially if the kid is already born.

In fact others had kids before , some should be now going through puberty or pre puberty. No cases reported about pfs passing down to the next generation, no reports of unhealthy kids either.

I see there’s quite a few non responders to pde5 inhibitors among pfs population. Statins come with their risks too, and they may even lower testosterone, but seems like there’s some evidence for its use in pde5 non responders, if you ever happen to become one. This is from a review of 2017.

Good luck

Theoretically, statins seem to be a double-edged therapy for patients with ED. Although our study revealed positive consequences of these lipid-lowering drugs on erectile function, especially for patients with no response to PDE5Is, the study was limited in the number of RCTs included and high heterogeneity existed in the meta-analysis. Hence, additional large, well-designed RCTs with high-quality are needed to explore the general effects of statins for the treatment of ED…

#10

All these “there’s nothing proven statements” sound exactly like the pro-fin people/companies saying PFS isn’t proven yet. This is a legitimate concern and you guys are just brushing it off completely, that’s worrying. This topic is barely discussed and this is the only drug that directly affects the prostate, it’s foolish to dismiss it. Even if a study says it doesn’t I’d be willing to bet it’s wrong.

This drug has only been out for less than 30 years so far. I repeat genetic problems aren’t always noticeable. So the oldest offspring would have to be around that age of 30 and I bet if they’re just getting problems they’re not gonna attribute it their dad taking finasteride decades ago.

Trump’s on finasteride and his kid has autism. Old age already increases the possibility of genetic problems, you mix in finasteride use and I bet the possibility increases even futher. That kid barely had a chance probably.

#11

@lbv we arent brushing it off, its just that there is no need to be alarming OP on this because there is no evidence of this being a problem (not even anecdotes, much unlike PFS) for the time being and he already had the kid anyway which defeats the purpose of your advice.

He came here to cheerfully say his life is going on. People who can, move on with their lives as they normally would. Theres been lots of PFS patient´s born kids.

if you are concerned about discussing or bringing this to attention, the best you can do is to open a thread about it. FYI this concern has been brought up many times in the past.

Dont think theres been any study about finasteride and autism in offsprings, but finasterides teratogenic effects are well documented. People shouldnt conceive on Finasteride and i must add, PFS is different from being on Finasteride.

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#12

just to add one or two things to my story:

  1. initially I was not responsive to the pde inhibitors, not 5mg and not 25mg of cialis. it was only after months of daily use.
  2. in the first year of using propecia I did have some other issues, like an episode of depression (never before having had this) and also a personality change which I recognize only in retrospect. but yes most symptoms were ED.
#13

thanks for this input.

indeed i have seen a lot of PDE5i unresponsive people. Some initially and some just developed it after continuous use. But it seems like this is not PFS specific, other people report being unresponsive to PDE5 inhibitors. I found this review yesterday and it caught my attention. they get into the possible mechanisms too.

What sort of personality change did you get, if its possible to describe it?

#14

Initially all I said was don’t be surprised if genetic conditions arise. And he denied it was a possibility so I was educating him and any potential lurkers. Also I wanted to get onto him for not even thinking about it before deciding to have kids. You can’t let that slide. Plus If I was his kid, I would want an explanation if anything did occur. Now if it does he can tell his kid what’s up.

#15

It doesn’t sound anything like that… PFS has many thousands of anecdotal reports and a growing body of scientific evidence. There’s neither for that claim, nor a sound theoretical basis in reproductive biology, which is what I pointed out. I get it’s a gut feeling you personally have and that’s fine, but it seemed like a moral judgement on irresponsible behaviour which is not really credible or fair.

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#16

@lbv
Any men who took fin are lucky to escape with their lives but any who let their perfectionism about the things fin changed turn into an evolutionary dead-end are fools. There’s a bigger world out there, take a look at the average person these days. The men on this forum are of above average intelligence so even if one or more of their children are born with problems they will still be a better contribution to the world even if they only have 20 or 30 years to work with than the millions and billions of morons walking amongst us.

#17

lol ppl here are above average? I think we’re all idiots, drugs have been around forever, you can’t take a new drug that’s only been around a few decades, it’s not long enough to judge the safety profile, so I think the excuse “I didn’t know” is pretty weak for most of us.

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#18

very hard to describe. it was subtle but I think perhaps an emotional blunting and decreased sociability. loss of sexual interest.

#19

Hind-sight is 20/20, I didn’t say the men here were smart, I only said they are of above-average intelligence if you step out of your bubble. You being considerate to your unborn children won’t prevent millions of turds from having their litter.

#20

I’m in a related situation… I used Procar last year for two months at the age of 55. I now have no function unless I use Cialis, etc… and I still have issues around lack of dopamine …not as much enjoyment for it