Thanks, I think I’m less aware of the sea change as a result of my shorter tenure here. I know we’ve covered the psychology of why people do pipe up to defend the drugs they use but it is still very disappointing to see, even if the numbers are shifting.
The death of the written word.
Again, if this article can help sensible guys to consider not taking this pill it is victory.
I am waiting for Ryan 's feedback on the final version of this article. I’m sure he has been honest. We have been in contact for a month and this guy is AN ABSOLUTE GENT. As you know I can be quite negative about my new condition ( cf this week end’s post) and I strive… Ryan will always be here for support as he himself is having a hard time.
A very careful person. Ryan if you ( and I know you will) read this I send you a warm man’s hug :D.
Keep in mind that when you are interviewed for a newspaper, a lot of “editing” goes in he process. In France it is the same. I hear people who say how little is kept when the complete interview was more detailed.
I am going to translate this article for our French association this morning so that we can add more evidence of the terrible consequences of this medication.
As for the comments, it is classic. It is a never ending story… The people who take it and are fine will never understand what we go through. I was there a year ago on considering staring fin.
The medical advice in the article makes it pretty clear that people should be careful.
Cheers for the comments guys unfortunately the article is very diluted and doesn’t touch the true horrors of what the majority of us are suffering. Some exposure at least 
Yeah great to see awareness about our condition but yet again they only focus on the sexual stuff. The neurological stuff like the complete feeling of isolation, racing thoughts, brain fog, depression, low stress tolerance, anxiety are the real devastating effects that can wreck someones life.
IMO the fact sexual sides can strike ANY TIME even after stopping the treatment should be enough to deter anyone fro taking the drug. When looking online, the semantics is vague and most sites will say it will stop after taking the drug.
I was super cautious when taking it on three things : breast growth, libido, erections… I constant checked anything that might go wrong. Most of the time, you take a drug, you get sides quickly after intake. We can see so many dues who get hit after a week or a couple of days… The ones who are at danger are the ones like me who go perfect for months and who “out of the blue” get fucked… When my dick went limp all of a sudden after eleven months I did not know what was going on… This article makes it clear that you should stay off this drug. The medical advice is clear from the docs who advocate the risk / benefit aspect. There should be more videos on youtube about negative experiences of Propecia… When I looked a year ago the results show the happy stories ( I remember this guys who tells his story from the NHS) but more difficult to get the dark side of the drug, except for Paul Innes. It is pretty obvious Ryan insists on : sexual sides, depression, anxiety that lead him to lose his job and marriage. He mentions neuropathy, that is freaky. The ex tacher is quite clear as to what extent his life has been trashed by Fin. The devastating consequences such as losing your partner and job to this should make things pretty clear. Because of this drug I for the first time did not go to a music festival I had attended for years… If I look back on what happened in the meantime: A year ago I started fin and a month ago I stopped it… I may be depressed but the underlying factor is the drug.
Well done for speaking out @LazarusRy. Without a doubt human stories make the issue harder to ignore. The huge stigma attached to sexual and mental illness in men has historically hamstrung pursuing this angle effectively as so many want to remain anonymous. However, anonymity goes barely anywhere when it comes to telling human stories. Without bravery like this getting the word out is much harder. We are working on ways to establish our youtube channel and hopefully inviting members to tell their stories of how PFS has affected their lives as people. It’s important that people know everyone affected is a human being who had a valuable life.
The article is could be more hard hitting, as you say, in the sense that it is commenting on a few of the more well known symptoms. I don’t feel like this - or much - commentary appreciates the context of PFS as a novel disease state with it’s very peculiar behaviours. However it still functions to draw attention to lasting and indeed developing consequences. It does note things that are more out of the ordinary, including the progressive development of symptoms. It also provides a link to this site which can provide contextual information regarding the broad health effects. I’m not personally a great believer any media coverage is going to make a practical difference for those already with PFS at this stage, but that’s my own opinion. I tend to think of everything in terms of translational benefit. As such I see anything that is broadly supportive as a simple benefit in drawing some attention.
While the Mail comments section is not renowned for its empathetic content, this is a somewhat natural reaction and it’s not just those who are fine on the drug. This condition is not well imaginable and can vary enormously in affected sites and severities. We even have many cases in the patient community who do not appreciate the breadth of this condition, say they dont “believe” the extent of what some members are suffering with, and often attempt to explain away symptoms of others even in the presence of published or diagnostic findings. I do not remotely expect most members here to understand what I go through. A small amount of the patients I’ve had to deal with in the past who believed strongly in alternative health ideas have been frankly extreme, aggressive and bizarre. My personal guess based on a close reading of the history of the forum is that it stems from either feeling it’s somehow too outlandish and could threaten people taking them seriously with their own symptoms, or wanting to think certain things are not possible due to a propensity to reflect the experiences of others onto their own prognosis. Either way it’s self-defeating for everyone and quite unfair. I believe the latter rejection is no different to the denial of the entire situation by asymptomatic finasteride users. Sadly, for many considering this issue - (for now) satisfied consumers, physicians, scientists, and even many patients - it’s easier to make like an ostrich. Wishing it away hasn’t helped yet, and certainly doesn’t help me with the pain i’m in nor the amount I have to do day in day out. The solid data from our survey is going to be such a great help in the future I feel, within the community and beyond, at portraying the true situation. Please keep up the efforts to getting your fellow members (and hopefully accutane patients where you find them) to take the survey so everybody is represented.
Yeah in keeping with the spirit of Paul Innes and Ben King.
I wonder how these guys are doing now since they no longer hang around anymore.
It seems Paul has gotten better over time No idea about Ben King though…
AmIBritishOrBosnian , London, United Kingdom, about 6 hours agoDon’t take it. Took me 4 years to return to normal… weight loss, ED, watery semen/low sperm, low libido, no morning erections, dull orgasms and so forth. It works but it’s not worth it.
I wonder what this guy’s story is.
Thank you so much to @Jaime and @axolotl for pushing to make this happen. Truly awesome work.
I understand people’s complaints about how the article doesn’t fully capture the horror of the condition and glosses over some details but I have to say I was actually impressed by it overall. As an overview of the condition I thought it covered quite a lot of ground. The inclusion of Ryan’s personal story along with supporting statements from sympathetic members of the medical community and a reference to the growing online community, all adds up to quite a compelling picture, I reckon.
I posted this article on the hair restoration network forum
If anyone here is on that forum please leave a comment.
I think the message isn’t getting through, these articles don’t address enough of the problems. You can see people replying saying how few people get problems so our issues are an irrelevance.
“Some people get erection problems” is significantly different to “some people have erecrion problems and their bodies essentially stop working and their ability to feel emotion and think clearly goes with it too.”
@Greek
People put the perspective they want on such articles. A guy who has zero sides on fin who reads it will probably rant and feels he is fine or has no clear idea sides can strike any time.
Hence people who laugh at PFS on hairloss forums… On the French forums things start to change as more people post their horrible fin story…
Now from our point of view we have been victims so the feeling of despair, how little we are understood hits hard.
Again let’s hope a more sensible dude who comes across this article can think twice before popping the pill.
I agree. I think we need to write a long and deep article that conveys the full picture. I wrote about this here:
I agree. I think somebody with a reasonably open mind reading about how the drug can cause persistent/permanent sexual dysfunction, mental illness and the other side effects described, and has led to a significant number of completed suicides, will be able to read between the lines and figure out that it’s seriously screwing up people’s lives. Of course there are things the article omits, but I don’t agree with this idea that any media coverage is essentially worthless unless it ticks every single little box. Also, as you say, despair is subjective. This is a science-informational sort of article, not a polemic, so the journalist keeps her personal feelings out of it. That doesn’t mean she’s not giving important factual information, and I think it’s also worth noting she gives a platform to Ryan and the other guy quoted anonymously to express their feelings.
I’m not saying it’s perfect. Yes, it’s worth continuing to push for more and different kinds of media coverage, obviously nothing will be enough until we have people seriously working on a cure for this condition, but I think we should still celebrate moments like this for the victories they are. It’s all part of the process…
I saw something on TV that said there wasn’t much investigative journalism in the main major US media networks. Also they were pro corporation and didn’t normally go out of their way to expose corporate wrong doings. Perhaps exposure would be easier in countries that had investigative journalism. Start small and build momentum. Maybe also look at the major countries outside the US who are big consumers of Fin. Theres a global patient map somewhere. I bet the UK is in the top 5.
Europe seems to be more vocal about SSRIs and Fin, the UK not so much. Off topic but UK NHS has power over doctors and what they can speak out on. It might help to get current stories translated into other languages like Italian or French. I came across an Italian guy with PFS, he had no idea. Perhaps there’s many guys who don’t speak English well in these two countries and can’t understand the forum.
Hairloss feels like a first world problem. We have so many positives in our lives that we take for granted. Then we find a small negative like hairloss and allow it to grow and become a mental concern. Then we get PFS and suddenly realise whats a real problem and going bald isn’t one of them.
If I’d have gone bald it wouldn’t have affected the important things in my life like career or sexual partner. So there’s also a point of getting through to men that hairloss is not a problem worth risking everything to treat. Some will still take the drug despite the warnings because the fear of hairloss overwhelms them or they simply can’t relate to the symptoms of PFS.
If we had the number of men who’ve reported symptoms of PFS that might make some realise it’s more than a handful of men and therefore they could be at risk.
If you read a number in the thousands you’d think this condition is more common than you thought and there’s a real risk of getting it. You then ask why haven’t I heard of something that affects thousands of men. Then you see someone thinking about this and not just heading to the next story.
There’s an investigative TV show here in the UK called Dispatches, pretty credible and well-regarded, which is currently putting together an exposé on Accutane, I believe.
Do you feel we need to do more to promote our translate function? (this forum can be read in just about any language that exists, even though it does require a mouse click per post)
I’m not sure we’re the translate function is on my phone. If non English speakers found the propeciahelp would they be able to understand what the forum is about? Maybe if they could translate the first page that appears in their search that might help.
Or what about a web page in Italian for example that promotes PH and the conditions it covers so folk understand etc. Maybe the participants from the French FB page could explain if they had any difficulties in finding PH.
It only appears when the forum detects posts in a language different to your own. Take a look in the foreign language folders and it will reveal itself.
It has been included in some articles in French. Of course, I found out after the disaster.
There was also a tv report earlier this year and the PFS founder was interviewed. Again, language barrier WILL be a problem I guess.