Long Term Side Effects From Propecia - Post Finasteride Syndrome - Does it Exist?

[chrisis]

Dr B says it for me there. Tragic as their deaths are, I doubt the reasons for their deaths can be definitively attributed to taking Propecia. It's not going to stop me giving Propecia a very good try. Yes, Propecia is risky. But so is life.

 

"Doubt" is why the studies are ongoing, but as a keen observer of this controversy over the last 3 years, that "doubt" is beginning to fade away. In your case I find it strange that you casually reject the link, considering you personally took Adovart and witnessed strong side effects yourself. I suppose it just goes to show, if someone is keen enough to try finasteride, no matter the apparent warning flags, they will reason themselves into it somehow. That's your choice, but an interesting phenomenon.

 

I'd encourage you to at least listen to this interview of Kelly Pfaff, a widow of a PFS victim, who talks about how this drug killed her husband. She is just one of six families we know about who have come forward to testify that there is a link between finasteride and their untimely deaths. Also check out the obituary of Dr. Daniel Stewart

 

Note the end:

 

The family requests that expressions of sympathy take the form of contributions to the following: the Post-Finasteride Syndrome foundation.

 

With all due respect, it doesn't appear they had any "doubt".

[mahhong]

Indeed, I think the evidence is fairly clear that 5ar inhibitors can and do cause problems with sexual and neurological function on occasion - not in every man, certainly. Perhaps only in a very small minority indeed. But there would seem to be growing evidence that some men are deeply affected by inhibition of 5ar and that those effects can be long-term.

 

I think a sensible study and investigation into PFS and who might be susceptible is more than warranted given the mounting evidence over the years. It would be fantastic if we could figure out who might be at risk from taking the drug, or if there are ways or means of limiting potential downsides or treating negative side effects.

[Bill - Seemiller]

I appreciate everyone's input on this topic. As evident by the replies on this thread, many have varying experiences. That said, I think it's evident that post finasteride syndrome is potentially very real and may affect a small percentage of consumers. While some cases of ongoing side effects may be psychological or be on related to finasteride, I'm inclined to believe that some who report ongoing side effects after stopping treatment are truly experiencing them due to finasteride use. Frankly, I think far too many consumers or patients have reported ongoing issues to be ignored. Thus, I personally support the foundation researching post finasteride syndrome in hopes that they will learn more and discover the truth. For those who are experiencing ongoing side effects as a result of Propecia or finasteride related products, my heart goes out to them and it is my hope that treatment will become available so that any ongoing side effects will disappear.

 

I look forward to hearing more experiences and how we can all collectively work together to help support one another and uncover the reality of the situation. Ultimately, I am not trying to discourage people from trying Propecia or using it, but people who are considering it deserve to know both sides of the story and make an informed decision on whether or not this treatment is right for them.

[Sethticles]

Ive been taking it on and off since 2005, generally not having any side effects, however that did change early this year, I had run out of my pills and decided to just stop taking them, within days wow the morning glory came back, so i think i was unaware of the side effects, i have gone back on the pills 1mg per day, morning glory happens every now and then, but for no major difference being on them or not.

[chrisis]

I personally support the foundation researching post finasteride syndrome in hopes that they will learn more and discover the truth. For those who are experiencing ongoing side effects as a result of Propecia or finasteride related products, my heart goes out to them and it is my hope that treatment will become available so that any ongoing side effects will disappear.

 

 

Hi Bill

 

As someone who has struggled with this issue over the last few years, I really appreciate those words! It certainly makes sense that we all support the studies, regardless of our position, because then everyone can rest assured about the exact mechanisms of the drug and whether it is truly safe or not. Perhaps men will need to be tested before taking finasteride to make sure they won't react adversely, who knows.

 

I wonder if the community here could support the Foundation in any official capacity? I can put you in touch with someone who is co-ordinating studies if you'd like to discuss it further? I think it would mean a great deal to those suffering with PFS to have the backing of a major hair transplant network and it would also stand this community in good stead for any adverse PR that results from Propecia studies and/or litigation.

[Matt27]

Just to continue from my last post, I obviously do not think that finasteride is worth the risk, but I am not going to tell anyone not to use it. I just think that the risks need to be understood so that everyone can make an informed decision.

 

This denial about finasteride side effects isn't productive. People deny them only because it helps them sleep more easily at night.

 

I did believe the risks before taking it, but I used it anyway. I rationalized that I drive everyday, which is surely more dangerous. A handful of people I knew growing up have died in car crashes (and many more will follow), but everyone still drives. People smoke, etc.

 

I have always been a risk averse individual... except in this instance. I got emotional about my hair loss and decided to use finasteride. I think I would have stopped taking it once I calmed down and came to my senses, but it took only a few pills to develop very strong side effects, which have persisted to a large extent.

 

I do think that those of us who developed PFS have something that predisposed us to developing it. In my case, I had health issues before I took it. Others did not, but they may have had something subclinical that wasn't apparent.

[Matt27]

Also, it is mere speculation that DHT inhibition is the cause of PFS. Finasteride inhibits much more than just DHT.

 

For example, it inhibits the synthesis of neurosteroids that modulate the GABAA receptor. One of my symptoms is constant muscle fasciculations. It isn't difficult to imagine how interfering with GABA (our primary inhibitory neurotransmitter) could cause over-excitation like this.

 

Interestingly enough, the neurological research team in Milan is investigating 5ar1, not 5ar2.

[htloss]

I tried Rogaine but I had heart palpitations as a side effect so I stopped using it.

This is not the first time that I have written about my hair situation on this site. I posted several years ago. No one seems to have a substantiated explanation as to why some people's hair transplants stop growing over time. I was contacted by other men who have this issue, so I know I am not alone in this.

Currently, I am dyeing my hair. Eventually I will let it go grey and I am hoping that the loss of hair will be less noticeable. Strangely, there is more loss on the right side of my head.

I have been told that the concentration of DHT is not always even all over the scalp, and areas of higher concentration may have more fallout.

[LondonHTseeker]

In your case I find it strange that you casually reject the link, considering you personally took Adovart and witnessed strong side effects yourself. I suppose it just goes to show, if someone is keen enough to try finasteride, no matter the apparent warning flags, they will reason themselves into it somehow. That's your choice, but an interesting phenomenon.

 

...

 

Note the end:

 

 

 

With all due respect, it doesn't appear they had any "doubt".

 

I didn't "casually reject" the link between Propecia and suicide. That's an incorrect interpretation of what I said. You're clearly somewhat evangelical on this issue and I understand that your personal misadventure with Propecia has informed that position. However, it's important to try to make a balanced evaluation when assessing the risk that Propecia poses, and simply making a brief list of people who have committed suicide while on Propecia doesn't do that, no matter how strongly the families of the alleged victims of Propecia believe it was the cause of the death of their loved ones.

 

At the moment I'm still taking Avodart and the side effects are manageable in the short term; they're not too bad really. I'm hoping they'll go away soon. If they don't I'll swap to Propecia and stick that out.

[LondonHTseeker]

P.S. To clarify, I'm not saying I doubt that Propecia has driven some people to suicide. I'm just saying that PROVING beyond doubt the link between suicide and Propecia is likely to be difficult. I expect some people have committed suicide due to Propecia's side effects, though how many I don't know.

[mahhong]

P.S. To clarify, I'm not saying I doubt that Propecia has driven some people to suicide. I'm just saying that PROVING beyond doubt the link between suicide and Propecia is likely to be difficult. I expect some people have committed suicide due to Propecia's side effects, though how many I don't know.

 

That's going to be the really difficult part here; finding specific evidence of finasteride's involvement in depression, neurological impairment and sexual functioning issues. It's very difficult because those symptoms can all be part of a very complex series of biological and personal conditions.

 

Nevertheless I hope some progress can be made and some ways and means of identifying those likely to experience symptoms found.

[chrisis]

I didn't "casually reject" the link between Propecia and suicide. That's an incorrect interpretation of what I said.

 

 

Your words were:

 

I doubt the reasons for their deaths can be definitively attributed to taking Propecia.

 

I gathered from this that you were rejecting the link, and used the word "casually" because you didn't attempt a counter argument. I apologise if that's an incorrect interpretation (as you say), but I simply read what you wrote and responded accordingly. Your latest post in this topic clarifies that you don't entirely reject that there may be a link, just that you expect it to be proven beyond "doubt". The problem with that is we all have a different standard, as it's totally subjective. My own experience with the drug and my research since speaks to me more than enough to be convinced that there is a link, and I'm certain that studies will eventually confirm it. Who knows, maybe even the studies will still not be enough for you? There are, after all, people who think vaccines cause autism. That said, personal experiences inform our opinions greatly, and I realise that others haven't had the same negative experience with finasteride as me, nor three years of (almost) daily research into the causes of PFS and potential means to recover.

 

You're clearly somewhat evangelical on this issue and I understand that your personal misadventure with Propecia has informed that position.

 

I'm simply trying to warn you. If warning you (especially as you seem to be pre-disposed to side effects), makes me "evangelical", that's fine - if a little unfair, but are you being entirely honest?

 

You wrote:

 

At the moment I'm still taking Avodart and the side effects are manageable in the short term; they're not too bad really.

 

But in contradiction to this you wrote earlier:

 

I'm pretty sure the sides Im getting (from Avodart) aren't psychosomatic, they're quite strong.

 

I'm not sure if your participation in this debate is to argue semantics with me or to rationalise taking finasteride to yourself. I've discharged my duty in warning you, so I'll just wish you well whatever you decide to do.

Edited August 6, 2015 by chrisis

[chrisis]

That's going to be the really difficult part here; finding specific evidence of finasteride's involvement in depression, neurological impairment and sexual functioning issues. It's very difficult because those symptoms can all be part of a very complex series of biological and personal conditions.

 

Nevertheless I hope some progress can be made and some ways and means of identifying those likely to experience symptoms found.

 

Exactly. And aside from neurological issues caused directly by finasteride, who's to say that sexual dysfunction alone isn't enough to compel someone to commit suicide? Isn't finasteride still responsible? Now consider that this sexual dysfunction is compounded by subsequent marital and family problems. Couldn't depression result from this, albeit indirectly? Sexuality and relationships are so centrally important to us, so I'd say yes.

[Spanker]

Wow.

 

Thank you to Bill for opening this topic up for discussion. This is one of the biggest issues facing the hair loss industry right now, and one I urge people - particularly in the industry, to educate themselves on. I have personally witnessed this topic coming up on various forums and being roundly ignored and disregarded.

 

I literally shot out of bed at 2am (UK) to respond to this after being notified of this topic through email. At the time I was on Skype chatting with one was talking to one of dozens, if not hundreds of men, who I've met through various PFS related forums and who are victims of this drug. Some have died - in fact 2 participants in an ongoing study conducted by the PFS Foundation have since committed suicide.

 

To be short; yes, PFS exists, after 3/4 years, I know it is true, because I am fighting it every day. And compared to many men I've read about, I have actually got away with it quite lightly. At least I am still here and have a relatively normal life. The same cannot be said for many, who've at worst lost their lives, and others who've lost their livelihoods, while families have been torn apart due to wide ranging ailments from the oft-mentioned sexual, to mental and physical.

 

Feel free to ask me any questions as this is a topic very close to my heart. I work as a patient advisor for a popular European doctor and am also a well known FUE blogger. When people ask me for advice I find myself in something of a difficult position, but I will always give my honest opinion:

 

If you can, I suggest you avoid Propecia until the PFS Foundation complete their studies. They are working on three major initiatives at Universities (Baylor, Brigham and Milan), and I'm confident they are going to shed some light on this syndrome. Regardless of how you feel about this topic, even the naysayer must admit that it is surely in all of our interests that we're well informed when taking this drug. Unfortunately Merck have already backtracked several times in terms of their labelling of side effects, so we cannot rely on them for the truth. And don't forget the scandal of Vioxx, a drug which had side effects that Merck knowingly withheld from doctors and patients for 5 years, killing tens of thousands of people.

 

By the way, the PFS Foundation's annual address for 2015 was just released today and sums up where we currently stand. You can read it here.

 

I haven't read this who thread, but I'm wondering, what does Dr. F think about your stance on finasteride? Does he perscribe it? How do you feel personally representing a physician who does with your concerns?

 

I'm not being combative, I just find it very interesting and just noticed you were a rep.

[multiplier]

Hi all. I wanted to weigh in with my experiences, some of which can be read in my posting history from 2011 when I suddenly experienced some changes after 10 years on Propecia.

 

Below I'm going to post what I posted to PropeciaHelp.com, but which was never approved by their admin. I don't know why. I suspect because what I've experienced straddles the line between PFS and anxiety problems. But there's no denying the very distinct overlap in those symptoms and to this day, I don't know if they're psychological or brought about from finasteride.

 

This is what I posted to PropeciaHelp, and also the personal history I give whenever I see on of the many urologists, endocrinologists and psychologists I've seen since 2011. Apologies if it's explicit, but I'm curious if it resonates with anyone.

 

------------------------

 

Short version:

In late December 2010, the same month my wife and I split, I began to experience sexual dysfunction followed by severe depression, and numbness in other places like my teeth. This also happened to be the same month I bumped my 1mg/day Propecia habit to 1.5mg/day for 10 days. Libido issues have persisted since then and I’ve struggled to understand whether my problems are medical or psychological.

 

Long Version:

I’m a male currently in my late 30s. Back when I was a teenager I luckily did not have a problem finding girlfriends and I did have sex, with mixed results. But getting an erection was a huge source of anxiety. I would be extremely excited right up until the moment, then suddenly I’d become very self-aware, fear would set in and I’d start thinking of sex like a basic biological function. Not only could I not get an erection, it was like my penis was trying to escape into itself. It would just shut down. 50% of the time I had the opportunity to have sex, I was not able.

 

1998

When I was 24, I began noticing enough hair loss to try Propecia. I took it from 1998-2010 with a healthy libido and no side effects.

 

2004

I met my future wife. She was extremely sweet and accommodating, outwardly, but within months I also realized she was very depressed and self-loathing which manifested in various ways. Regardless, she was very loving and loyal, but it was a rollercoaster always. After a couple years, my perception of her began to subconsciously affect my desire for her. I realized I wasn’t as physically attracted to her as I should have been. It became a source of anxiety. We stopped being intimate much. Yet in 2008 we got married anyway.

 

2009-2010

After a calm life in Virginia, in 2009 my wife and I both found jobs in Manhattan. Both were ambitious, high-stress, creative and challenging, with long hours.

 

3 months in, her mother died suddenly and tragically. My wife shut down emotionally. She basically checked out for many months while I worked extremely hard to support both of us. I sat in front of my computer for long periods of time and let the stress slowly consume me.

 

It had been obvious in previous few years we’d resembled roommates more than lovers. This was sharply obvious after 6 months in New York. She basically slept all day and seemed to have no interest in our relationship. As for me, my libido was through the roof. I fantasized about every woman at work, every woman on the subway, women I would have never considered remotely attractive before. I was ready for anyone. I felt like I had erections all day long. My heart raced. I masturbated constantly. My thought was, "if we break up, I will be sad, but at least I can console myself in dating and much-needed sex for awhile." These thoughts consumed me, but I also felt guilt. I could feel my mind coming unraveled.

 

Toward the end of 2010, I got a huge crush on a woman on my soccer team. She was all I could think about. I had to force myself to have sex with my wife. She represented darkness and depression to me, I think. After having a drink with this other woman, I knew: I would need to separate from my wife.

 

Within that same month, I thought I’d been noticing more hair loss. On a dermatologist’s recommendation, he said to try 1.5mg/day of Propecia, rather than 1mg. I tried this for approximately 10 days.

 

 

December 27, 2010

As all these things were swirling around my head on Christmas break, I woke up on the 27th with no morning erection. I couldn’t remember this happening, especially after the previous year of sky-high libido and desire. I got up and stood in the shower. For the first time ever, I realize I couldn’t masturbate. I felt physically and mentally exhausted. I felt numb. This worried me, but I assumed it would pass. I almost laughed: “Ah, so a bit more Propecia is bad for me, I’ll scale back down and it should fix itself in a few weeks.” But right at that moment a fear set in, also, which has never gone away.

 

January 2011

My wife and I agreed, mutually, to separate. She would move out on Feb 1.

 

In the weeks leading up to her moving out, I experienced other sensations. My urethra felt tighter. Sometimes the head of my penis almost felt sore. I felt like I had “butterflies” around my prostate, rather than in my stomach. Sometimes there was a light ache. I wasn’t getting morning erections and couldn’t masturbate. I felt like a nervous wreck and couldn’t sleep. “This will pass,” I continued thinking.

 

After a few weeks of this, I began reading online and that’s where I discovered PropeciaHelp. This made things considerably worse. After taking the drug for 12 years, this was my first time reading about people who had had side effects for years, long after quitting the drug. I didn’t even realize that was possible. I went into a fugue state for a few days, barely talking to my wife or anyone else.

 

I made an appointment with a urologist who understood my panic, but said I was one of many men he’d seen with my profile: mid-30s, working too hard, relationship ends, bottom drops out, serious anxiety sets in. He said it was really unlikely a drug I’d taken for 12 years would suddenly have side effects. We talked about prostatitis, but he said it was a meaningless diagnosis much of the time. He have me a scrip for Viagra and Klonopin and patted me on the back. The blood tests he took (testosterone, cortisol, adrenal, etc) came back completely normal.

 

On Feb 1, my wife did move out. Here I was, finally single after years of burning desire for other women. And not only do I become physically numb, I get mentally numb.

 

2 weeks of being alone, I had a horrible realization -- I'd just lost the most wonderful wife I could have, one of the sweetest people I’d ever known. I didn’t want to be single, I wanted to fix us. All I could focus on was how loving and decent she was, and how I'd never been able to reciprocate. Suddenly It was like I'd forgotten about every single negative trait her in her and could only see the good.

 

I began to spiral, badly. I couldn’t believe what was happening. Every night before bed I looked back over my life the previous 10 years and thought about what a shitty person I was. It was like the combination of impotence-fear and reality of divorce pulled back a shield from my eyes and the world looked like a very terrible place. Nothing was really ever quite the same.

 

 

Spring-Winter 2011

I barely held down a job during this time. Not only had I possibly ruined a meaningful relationship because my sexual desire had been out of control, now I was experiencing medical symptoms that might be permanent. Physically my penis felt like a 5lb weight was hanging from it. I had a lot of dire thoughts.

 

On my birthday, I was out with friends and my wife showed up. It seemed weird, but she wanted to be there and she walked me back to our old apartment, asking to spend the night. As soon as we walked in the door that night, all my symptoms went away. We lay in bed talking at first, then touching and eventually had sex. I took a long time to finish, but my penis was plenty hard, even though I was drunk. Being back with my wife, it was like my entire body felt a huge sigh of relief and physiologically I felt different, even just for that night.

 

For the next month, we lurched back and forth, sometimes thinking about working things out, sometimes not.

 

In April, I decided to take a 3-week opportunity to return to Virginia, relax and work remotely. The first night away from New York City, I woke up with an erection. During the rest of the trip, I noticed very little “tension” in the groin and was able to masturbate 2-3 times a day. It was spring and I had missed the quiet of Virginia. I began to feel optimistic about my marriage. After 4 long months, it felt I was almost back to normal. It occurred to me: “The stress in NYC must be causing this.”

 

When I returned to New York, I did something stupid. I began taking Propecia again every other day. Within 3 weeks, I began noticing a lack of erections / weaker erections. I was on a tightrope, wanting to fix things with my wife while wondering if we ever should have gotten married. I wasn’t sleeping and feeling ragged and desperate. The muscles in my urethra felt sore and weak like an overused muscle.

 

Ultimately I decided staying in NYC was unhealthy. I left a very promising job and all my friends and moved back to Virginia. I also quit Propecia again.

 

When I got back I felt like I’d lost all enthusiasm for my job as a computer programmer. I didn’t look forward to anything. It was like all the optimism had been vacuumed out of me. Old friends told me I seemed different and fragile. It was like I’d inherited my wife’s depression.

 

Throughout the Fall my wife stayed in NYC, unsure about our status. I isolated myself a lot and didn’t get out of bed some days. The mornings would start ok, but by the evening I would feel extremely depressed and full of anxiety. The area around my perineum would feel numb or ache and sitting in a hot bath was the only thing I looked forward to. I could always get erect and masturbate while sitting in the bath. After a few more months it became obvious that my wife and I would not be reunited.

 

 

Winter 2012

In January, I decided to do something to improve myself. I went to Asia for a couple weeks to build houses with Habitat for Humanity. Toward the end of the trip, there was time to relax. I found a hotel with a pool and read books in peace. After 2 days, I noticed I wanted to look at porn in the mornings on my iPad. So I did and soon realized I had the urge to masturbate, sometimes a few times a day. I didn’t feel any strange sensations.

 

When I got back from my trip, I felt different. I could get erections in the morning and in the shower. It was like my mind/body just “decided” it was done with being fatigued and “chose” to feel better. I started getting up earlier. My mood shifted suddenly - I didn’t care about working things out with my wife. If I could indeed have sex again, I wanted to do that.

 

Once again, after a 4-month break from Propecia, I felt I was on the way to improvement. It lasted about a month. I don’t know if I was 100%, but I was excited for any progress.

 

But I went back to taking Propecia. I’d been nervous about losing more hair. Plus, I’d momentarily convinced myself (again) that this was all psychological anyway. Sure enough one morning I tried and failed to masturbate. Then again. I spiraled. “I will never get better” I told myself. I developed an anxiety to the thought of evening look at porn. Once again, I stopped Propecia.

 

 

Spring-Summer 2013

I visited New York again to hang out with friends. One night, a female friend and I flirted. Before I knew it, we were back at her apartment. Then in her bed, wearing just our underwear, making out. But I was thrilled to realize that whole time we fooled around, for 2+ hours, I had an erection. I don’t know if it was strong enough for sex, but it was something. The next night, it happened again. Luckily she was fine with some making out and dry humping with no pressure about sex or anything else. But it felt like a small victory.

 

Unfortunately it didn’t last. Back in Virginia, it was more of the same. When I became stressed about the anxieties of the last year, my urethra would feel tight. It almost felt like there was grit or sand in the urethra, something very small causing inflammation. I also developed another issue where my teeth felt strange like they were “vibrating” or numb. I continued to miss my wife, as counterintuitive as it seemed.

 

Once again, I saw a urologist. He did the dreaded prostate exam and things felt tight. A bit of clear liquid came out of my penis during the exam and he tested it in the lab. He seemed to think I had some prostatitis-like symptoms, but was otherwise stumped. He gave me a drug I can’t remember which, for a week, made the tension and soreness subside, but with a strange side effect: when I masturbated, nothing came out.

 

I also saw a series of therapists and general practitioners. Every single one of them urged me that this was a psychological problem that would resolve when things resolved with my wife. It was a sustained “fight or flight” kind of reaction. I thought back to those adrenaline surges during my teen years, when sometimes it felt like my penis was shriveling up due to fear or excitement.

 

A few weeks later, a very attractive and desirable woman I known for years spoke to me at a bar. The night wore on and I had her in the palm of my hand. When it was time to leave, we made out in her car for awhile and told me she wanted me to come inside for sex. But I felt nothing in my penis. No “movement”, no bloodflow. I felt like a wreck. I told her I wasn’t ready for that, then drove home. Back at home, I tried to masturbate and failed. I sank to an extremely low level.

 

July 2012

I knew things had reached a strange level when I decided to consult a hypnotherapist, but it felt like a last chance effort. I’d read online about hypnosis helping with sexual dysfunction.

I’d been having seriously dire thoughts and my nerves were shot. I was pessimistic, but was at the end of my rope.

 

I’m glad I rolled the dice because a lot changed that day. The therapist was a reputed behavioral psychologist in town who used hypnosis to treat anxiety and PTSD. We talked awhile and then did 20 minutes of hypnosis where I felt completely given over to what he was saying. I vaguely remember him telling me things would be ok, I would move on from my wife, the “weight” would be lifted, etc.

 

Walking to my car afterward, I felt something very strong. I felt physically and mentally “different.” Lighter and happier. I went home, lay on the couch and stared at the ceiling. Without much effort, I was able to get an erection. In the evening, I played a soccer game and scored 3 goals. Often after sports I’d felt the inflammation in my perineum area most, and usually couldn’t masturbate. That day, I felt no tension and masturbated fine.

 

The next morning I woke up with an erection. But throughout the day I noticed something else. After 18 months of my prostate feeling uncomfortable and penis feeling “tight”, those feelings were gone. No soreness whatsoever. That has continued to the present day. My libido wasn’t “raging” exactly, but I felt 80% better and could get above-average erections while looking at porn. It was strong progress.

 

 

Fall 2012-Winter 2013

I’m sure you can guess what came next. After 30 days of feeling better, I went back on Propecia. Again, I felt strongly this was all psychological and I didn’t want to lose more hair, especially if I was going back to the dating world.

 

A month later, I realized I was having less morning erections. But for months and months, I could still masturbate. My libido was average. The numbness, tingle and tightness in various places in the groin were gone. But there was also intense loneliness and some processing of what had happened with my wife and I in NYC. I obsessed over it. Despite everything, I missed her, and I still never felt very happy after the divorce was finalized.

 

The worst part is that even though my erections had mostly come back, I did not feeling excited about hooking up with women. It just felt business-like when I would masturbate. I felt almost indifferent. There were women whose personalities I liked, but I didn’t have that raw “I want to fuck” feeling. When I’d get flashes in my mind of naked women, they’d immediately disappear. That animalistic desire had never actually returned.

 

 

Spring 2013

After I went away on a backpacking trip for a few weeks, I returned feeling good enough to try dating. At this time I’d been back on Propecia for 8 months.

 

Before I knew it, there was a 25-year old woman who was smart and sexy and after a few nights of hanging out, I knew sex was imminent. Here is where the problems really began. I told her it had been 2 years and I was nervous and possibly couldn’t perform. And sure enough, no matter what we did, even just making out, I could not muster a strong erection. This went on for about 3 weeks. On top of that, she was seeing someone else and wanted our dating to be “open” which wasn’t cool with me. During this time, I also tried to masturbate when alone, but couldn’t. The pressure of imminent sex and suddenly below-average libido had me completely freaked out. Things fell apart and I was almost relieved.

 

It was at this point I decided to quit Propecia forever, even though certain things led me to believe my problems were all psychological. On May 1, I took my last pill. I wish I could say things got better.

 

Within 10 days, I noticed my penis shriveling and retracting. Having my penis actually appear differently was an issue I’d never experienced. Also the head of my penis was cold to the touch throughout the day. It felt strangely “spongy” like there was a serious lack of any blood flow. Was I imagining this? After another week I finally googled the symptoms and sure enough, all the results were about Propecia.

 

Why had this happened after stopping the pill? Why had hypnotism, of all things, helped so drastically in the first place?

 

 

Summer 2013-Winter 2013

 

The shriveling and coldness lasted for 2 months. I became seriously depressed. My penis felt like it simply wasn’t there. When I told this all to a therapist, she said the #1 issue for men is fear of impotence and the suggestion of one’s penis “not being there” is an age-old complicated anxiety. All the previous benefits of hypnosis seemed to have faded. So was the shriveling psychological or medical?

 

This past July, I threw myself at the feet of my urologist again, hoping he could recommend something. He gave me daily Cialis. This changed things greatly.

 

The first day after I took it, I woke up with a morning erection. I walked to work and the sun felt warm on my skin. I felt like I was on an ecstasy pill. At work I found myself absently browsing porn for a bit and getting an erection at my desk for the first time in 2+ years. I caught a glance at a female co-worker and thought about her while I was in the bathroom, suddenly feeling myself getting an erection. Back at home, I found that I could look at porn and stand up with an erection and sustain it. I felt of giddiness and almost cockiness. It was like just the sight of a very firm erection kickstarted my libido, rather than the other way around. In those first few days, I remember driving to the grocery store, absently touching my penis through my jeans and having to wait in the car before going inside so my erection could subside.

 

For a few weeks, I essentially “forgot” about my libido issues throughout the workdays. It felt “solved” and I could focus on other things. Every time I went to the bathroom, I noticed my penis didn’t look like a chewed piece of gum. It looked and felt “full.” The shriveling was gone.

 

 

By the end of the summer I found myself missing my ex-wife intensely, irrationally, out of the blue. Even though I continued to take daily Cialis as an experiment, I noticed the shriveling had returned. Was the whole thing psychosomatic? I felt confused and pessimistic overall. If I’d tried to masturbate, it was fine, but I couldn’t deny I didn’t really think of sex at all throughout the day spontaneously.

 

So for the last 6 months, I’ve continued on daily Cialis. I don’t feel that “throb” in my penis during certain times of the day like I used to, pre-2010, but I can get an erection if I relax and concentrate.

 

In November 2013, I met my current girlfriend and would not have been able to get through that without Cialis. For the first 2 weeks I dodged the issue of sex, but as I got used to being around her and appreciate how easygoing and nonjudgmental she was, and especially how sexy she was, I finally just went for it. The first few times, I wasn’t 100% hard and would occasionally stop/start (although this had been true when I was younger occasionally, too). For the last 8 weeks, we’ve been all over each other, having sex sometimes 3x/daily. The more I’ve tried not to focus on “am I still hard??” constantly during sex and just enjoy it, the more sustained the erections have been. The sex is fun and intense. We really like each other. While I’m with her, I feel turned on.

 

Which is all great. But when I’m not with her and I’m not in Cialis, things fall apart.

 

When my girlfriend went out of town last week, I stopped taking it for 4 days to see what would happen, and also to save money because it’s expensive! Sure enough toward the end, I tried to masturbate and my penis was rubbery. I was watching a really intense porn, but it didn’t matter. Later when I went to pee, I noticed my penis was covered in a million tiny wrinkles, which had never ever been there prior to quitting Propecia last Spring. In my past experience, 4 months off Propecia is usually when I feel a blip of improvement. But my last doses were in May.

 

For the record, I don’t obsess about my wife anymore. I’m at peace with how things ended. I don’t feel outwardly stressed about anything except this issue. I’m thrilled to be in a new relationship and the sex is great. Cialis seems to give me confidence--

 

So why do I still have this problem? Should I go back on Propecia or stay quit forever? Am I now doomed to be on Cialis every day?

 

I was also 35 when the problem started. I will be 39 in March. I no longer know what a “normal” libido is even supposed to feel like at this age. Should it still be “raging” like it had seemed just a few short years ago?

 

I’m also happy that, with a few exceptions, when I’ve been with a woman who really turns me on, my penis has responded mostly pretty well. Yet I often can’t masturbate to porn these days when alone. It’s a strange problem to have.

 

Since experimenting with Cialis, I have gone back and read all the “Recoveries” posts at PropeciaHelp. To me, many of them sounded like they might have had a psychological component. A lot of the healing seemed to involve sleeping more, calming and exercising. But I have learned after reading forums for things like acne, sometimes the passing of time is all that helps and the other healthy stuff isn’t such a strong factor. But I don’t really know what to make of it.

 

 

I wrote the above in early 2014 and am no longer seeing the girlfriend I described.

 

Since then, I've continued to take 1/4 a Proscar every day. I took a doppler test with one of NYC's top urologists and was declared normal. I can get erections if I watch porn but there is a delay in getting an erection and some numbness and occasional difficulty finishing. I don't get morning erections or spontaneous erections throughout the day like I did prior to 2011. I am lucky to not be "totally impotent" as some have described it. When I'm with someone and with Cialis, I can perform, at least eventually. But undeniably, due to depression/anxiety or due to Propecia, my libido is weaker and sustaining the erection seems more difficult.

 

Sorry for the length. I think it just helps to talk about it and try to figure it out.

[MAGNUMpi]

A few years ago I switched to a new generic brand of Fin and got severely depressed out of the blue for about 3-4 days. It was weird. That was the first time I remember wondering if the Fin had something to do with it.

[LondonHTseeker]

Your words were:

 

 

 

I gathered from this that you were rejecting the link, and used the word "casually" because you didn't attempt a counter argument. I apologise if that's an incorrect interpretation (as you say), but I simply read what you wrote and responded accordingly. Your latest post in this topic clarifies that you don't entirely reject that there may be a link, just that you expect it to be proven beyond "doubt". The problem with that is we all have a different standard, as it's totally subjective. My own experience with the drug and my research since speaks to me more than enough to be convinced that there is a link, and I'm certain that studies will eventually confirm it. Who knows, maybe even the studies will still not be enough for you? There are, after all, people who think vaccines cause autism. That said, personal experiences inform our opinions greatly, and I realise that others haven't had the same negative experience with finasteride as me, nor three years of (almost) daily research into the causes of PFS and potential means to recover.

 

 

 

I'm simply trying to warn you. If warning you (especially as you seem to be pre-disposed to side effects), makes me "evangelical", that's fine - if a little unfair, but are you being entirely honest?

 

You wrote:

 

 

 

But in contradiction to this you wrote earlier:

 

 

 

I'm not sure if your participation in this debate is to argue semantics with me or to rationalise taking finasteride to yourself. I've discharged my duty in warning you, so I'll just wish you well whatever you decide to do.

 

The last thing I want is to bicker semantics with you but I'd appreciate it if you'd stop misrepresenting what I say. The word I initially used as a brief qualifier was "definitively" i.e. "definitively attributed" = proved. You seemed to miss that detail in your haste to view me as a denier. I'm not a denier of PFS; it seems to be a genuine and serious illness for some. For how many I don't know; hence this is where rigorous evidence becomes important.

 

You suggest I'm being unfair and dishonest. I'm trying to evaluate Avodart's side effects on me and my opinion on them is fluctuating as the side effects change day to day. So I'm being uncertain, not dishonest. As for being unfair, I think the "somewhat evangelical" term is warranted in the context of you recommending people avoid taking Propecia until more studies on its safety are published. Well, as you currently have a full and stable head of hair that's a luxury you can afford. At age 39, my choice is between steadily losing my hair (with a fake island of hair at the front) or waiting out what are currently some relatively minor side effects. I'll go for the latter.

 

I'm interested to hear you response to Spanker's question, as the same one occurred to me.

[chrisis]

I haven't read this who thread, but I'm wondering, what does Dr. F think about your stance on finasteride? Does he perscribe it? How do you feel personally representing a physician who does with your concerns?

 

I'm not being combative, I just find it very interesting and just noticed you were a rep.

 

Hi Spanker

 

I've discussed this with my doctor both prior to my surgery and prior to working with him. First, I was pleased that he didn't demand that I take the drug before having surgery, unlike other doctors. Second, he is aware of PFS and sympathetic. I've discussed PFS with other doctors who have entirely rejected it, so once again, I was satisfied with his response. I don't expect him to stop prescribing Propecia - this is an industry-wide issue, but I have recommended that patients are fully aware of the risks. I will continue to further this awareness where I can, e.g. here in this topic.

 

As for being unfair, I think the "somewhat evangelical" term is warranted in the context of you recommending people avoid taking Propecia until more studies on its safety are published. Well, as you currently have a full and stable head of hair that's a luxury you can afford. At age 39, my choice is between steadily losing my hair (with a fake island of hair at the front) or waiting out what are currently some relatively minor side effects. I'll go for the latter.

 

 

It's my understanding that the studies will be released imminently, i.e. within 6 months to a year. Most people can afford to wait, rather than hastily take a drug that may have life-changing consequences. I don't think that's "evangelical" in the slightest. It's good, sensible advice. If you feel you can't wait, then go ahead and roll the dice. It's up to you.

[chrisis]

A few years ago I switched to a new generic brand of Fin and got severely depressed out of the blue for about 3-4 days. It was weird. That was the first time I remember wondering if the Fin had something to do with it.

 

A Dutch guy contacted me who had this exact experience. He switched from the brand to generic and developed side effects. Bear in mind, he'd taken Propecia for many years without issue, so didn't anticipate that changing to generic finasteride would do anything other than save him some money. He contacted me to ask for advice and I helped him wean off the drug over a long period. Fortunately he had no lasting sides - a lucky escape.

 

I suspect the reason he developed sides is because he switched from 1mg Propecia to 1.25mg Proscar. If we consider that our hormones work in harmony, even a 0.25mg change in finasteride dosage can cause severe disruption to our bodies.

[irishsailor]

Just my 2pence worth,

 

Has anyone ever considered the over usage of propecia? I know lots of guys on forums and through work who have got to a stage where they thought the drug was no longer working and decided to take higher dosage ,without medical advice ,from a physician.

Could some of the problems ,come from patients taking increased dosages above what propecia was ever meant to be taken?

[chrisis]

Hi irishsailor,

 

Check the chart I posted earlier:

 

 

This shows that even 0.2mg only inhibits very slightly less DHT than 1mg. Since most men are taking 1mg or 1.25mg and above, it seems the difference would be infinitesimally small.

 

I thought I'd give everyone a glimpse of what it's like in my world right now. I received this message on Skype just today:

 

Hello, I found your skype on the propeciahelp site. I also started suffering from PFS crash, It would be good If i could talk to someone about it. Thank you, I just want some chat about my recovery regimen, Im in the beginning of my crash:( btw I am from Hungary.

 

I've also received a few messages privately on this site about this topic. I'd say I receive roughly about the same number of enquiries about PFS as I do about hair surgery. It's reassuring to see the tide slowly changing on this topic, and I appreciate the support shown here and that people are sharing their stories openly.

Edited August 8, 2015 by chrisis

[LondonHTseeker]

It's my understanding that the studies will be released imminently, i.e. within 6 months to a year. Most people can afford to wait, rather than hastily take a drug that may have life-changing consequences. I don't think that's "evangelical" in the slightest. It's good, sensible advice. If you feel you can't wait, then go ahead and roll the dice. It's up to you.

 

As if I wouldn't be rolling the dice by waiting for the "imminent" studies... :rolleyes:

[chrisis]

As if I wouldn't be rolling the dice by waiting for the "imminent" studies... :rolleyes:

 

Gambling with your health for the sake of your hair, when three studies will be released in the next year? My experience suggests that's the very definition of rolling the dice, especially since you've already exhibited signs that you're susceptible.

 

By the way, mixing up drugs and doses is also a risky business. I spoke to one guy who crashed because he went away on business and forgot to take his Propecia. He'd been taking it for over ten years prior to this without any problem.

 

No need for "" around the word imminent by the way, unless you know something that I don't about the PFS Foundation? They're a genuine organisation investing millions into understanding this drug, donated by sufferers and their families - especially of those who've died. You should spend some time on their site and learn about them.

 

We're going around in circles here so once again, I wish you well.

[LondonHTseeker]

At this point in my hair loss progression, 6 months isn't my idea of "imminent" let alone a year! By that time I'll have lost a lot more hair. My appearance, including my hair, is intrinsically linked to my health, that's just the way I'm hardwired and likely always will be - aesthetics matter to me. Actually, the sides seem to have mostly dissipated now, so I'm intending to stick with Avodart for 6 months then switch to Propecia long term.

 

I did look at PropeciaHelp briefly. There seemed to be some scaremongering going on, but I'm sure there's some measured material in there too among all the hype. I'll give it another look. No need for the repeated good wishes by the way, it's kind of passive aggressive.

[Matt27]

There is no fear mongering at propeciahelp. However, there are some hypochondriacs and emotionally unstable guys who make others like Chrisis and I look bad.

 

It was partly because of those users that I didn't completely take the risks of finasteride seriously. I'm sure that sentiment is common on the internet. It doesn't help that those users are some of the loudest. And that forum is moderated very poorly.