there is no doubt that this forum contributes alot to PFS community and no one can deny the positive effects that propeciahelp has on finestride victims, my experience with propecia and it’s crash is kind of settled down, and i think for most of pfsers its like that, meaning that after some one crashes he starts to do what ever it takes to reverse PFS but after a while (1-2 years) if he makes it that far, some symptoms improves and some remains intact and the person will realize slowly that the only option is to put up with remaining symptoms(of course he tries to improve them but PFS kinda become part of his everyday life) after this point which i believe is the scenario for majority of pfsers(since recoveries are rare) only $$$ can ease the pain and suffering of PFS(to some degree). i think if our community puts the effort on getting the money for our ruined lives from Merck rather than a magic pill that will fix zillions of strange and unknown issues it would be much better for pfs victims. at least it would be helpful to get off financial pressures… i dont know who should i turn ? i think PFSers in the US should unite and do something about it(turn to a law office or write multiple letters to merck…)
Merck is so above the law you can’t really touch these people financially in law suits. Best we can do is warn people of the dangers continue to complain to the FDA and get our word out of this condition. I believe they will be forced to pull off propecia but finasteride will still be used since it’s for BPH but I think eventually 5ARI will be banned for cosmetic reasons such as hairloss.
They got away with a killing 60,000 people with vioxx and paid a small amount of $4.85 billion which is chump change for a company like them.
These scum need to help us out and put money into research for what they caused. The CEOs and lawyers for Merck are well aware of what Fin is doing and they will defend there company as much as possible since they have the financial capability.
That being said suing won’t do anything but having them pay for research into this condition will. We still need to prove scientifically what this is doing.
i have nothing against paying for research, but the priority should be victims and their lives…
other than that if they see us in numbers they might agree to a settlement( you never know…)
I understand money isn’t what I want personally I just want my health and well being back, money means nothing to me now.
bruh i want my health back too, but id rather rest/worry in my paid off home than worry about my rent,…
i think IF there is a recovery its only reachable in financial rich-fullness
having money would allow me to focus on recovery, I am close to being broke now and am unable to sustain a job still, money compensation would be a big relief.
EDIT: actually I am broke, I am living off credit cards
thats exactly what im saying…im sure getting a lump sum of 7 figure money would get me to a SEMI recovery… i wish we could organize a group to do sth…as time passes by i am coming to realization that this thing has no quick fix… the only thing that can help a pfser get going and get by is money
I don’t want money, I want my life. But I think it’s wrong that the longer we go without a cure, the more money Merck makes. It should be the other way around.
There’s no way anyone’s getting any compensation of any note without research proving the existence of PFS, the mechanism of acquisition and the existence of the problems it causes.
There’s already been a court case where people got, I believe, $8k. Not even a 5 figure sum.
Everyone’s best chance is the scientific effort.
im pretty sure everyone here will choose health over money but as i said in the title money seems more realistic and TANGIBLE.
yes ive heard of that one…i think there is an organized and low-key effort to silence pfs cases and downplay pfsers. considering the case u mentioned doesnt mean that we should remain silent and do nothing.
ps: ur argument is valid, a scientific breakthrough in pfs MIGHT lead to judicial victory too.
It sounds like you are a new PFS patient based on your perspective. Please correct me if I’m wrong. A lot has changed over the 20 years that Propecia has been approved.
We all want some kind of justice for what Merck has done by fraudulently selling a harmful drug but as things currently stand, that is very difficult. 400 cases were settled about a year ago and there are a few remaining, maybe a dozen, for people who were excluded or did not agree to settle. It will be very challenging to find any lawyer willing to take your case, maybe almost impossible, as things stand. If you started taking the drug after 2012, the case has another hurdle because the FDA changed the warning label to include the reports about persistent side effects. This is all very frustrating but I say that to be realistic.
Depending on your symptoms, I think the best thing to do is try to get treatment. Go get a urological and endocrinological work up. Maybe you’re lucky and you don’t have PFS but your problems are caused by some unconnected neurological problem. Some doctors may be dismissive but they will initially treat you the way they know how to. They may not have answers. You might want to try hormone supplementation which has risks but you might decide they are worth it. You can try PDE5 inhibitors like Cialis or Viagra. Maybe even get a work up by a sexual therapist in the lucky chance that you have psychogenic ED, although you will most likely know whether or not that’s true already.
The science is progressing slowly but the condition is slowly getting more wide acceptance. It will take years and has taken years to get to this point. It just is how the world works.
Lastly, there is some hope that Sage 217 will be approved in the next year or two and may be helpful to PFS patients. There is some theoretical reason to believe it could help but definitely not a guarantee.
There are reasons to be hopeful and to remain positive. But if none of these work, maybe go see a therapist and/or psychiatrist to get assistance with learning to live with the hand we’ve been dealt. You don’t have to like it but accepting it and managing it sure beats wallowing in misery. Many guys on this forum get stuck and have difficulty managing their lives but this is the best unsolicited advice I can offer a newcomer here after having been living with this many years.
Good luck and reach out by PM anytime if you feel like you are spinning your wheels or get overwhelmed.
thanks for ur supporting words, i dont know im considered a new pfser or a veteran but i crashed 3 years ago, ive done many things and i can tell u PFS treatment is BULLSHIT, i guess drs doing trial and error on pfsers doesnt count as “TREATMENT”, treatment definition is for disease that causes and roots are known or somewhat known, DR’s dont know jackshit about PFS… i think camping out infront of MERCK HQ would be a great idea . the only way that MERCK can make it up to us is MONEY. false and unreachable hope is something that merck is feeding to pfsers to get away from punishment.
EDIT: i am much better than my early days, this words are not from my frustration its about justice being served and we get what we deserve.
Personally I haven’t really found any treatments worth writing home about, and I have tried a lot, but I wouldn’t want to tell a new guy here to not even bother trying stuff. There are some things that can boost my function a few % here or there so I definitely think its worth each patient trying to see if anything works for them even partially if they care about their sexual health.
If you’ve tried all the treatments you are going to then maybe consider seeing somebody to help you accept and cope with what you’ve got for now. It is hard as fuck to deal with this but it is important to do your best because you can make it better. Even if PFS gives you a chemical imbalance that makes you depressed, there are ways to make that less painful and it makes sense to do what you can be improve things even if its not a total fix.
I’m glad to hear you are better than your early days. I am not sure about how to go about pursuing justice at this point.
man i didnt try EVERY option lol(its impossible to try out every combination), the thing im saying is i wish there was a forum that unite pfsers in a way that they would go after MERCK LEGAL-WISE. final thoughts: this forum is double edged sword it both serves pfsers and also hurts them in a way that they give-up going after MERCK legally.i m not saying itd have been better not to have this forum. i mean PFS foundation is a joke. i wouldnt be surprised if sometime later people find out that PFS foundations officials are well-connected to MERCK.(giving some false hope to patients and also preying on vulnerable to fill their never ending pockets)
The PFS foundation is definitely not linked to Merck we would have figured that out by now and the founder John Santmann lost his son after he took propecia they are good people I can assure you.
If that’s the case then why isn’t someone getting their hands on some to test it or trying a course of the IV version that’s already available. Sitting around moaning and hoping that something that’s two years away might work seems a little pathetic doesn’t it.
Do you think it’s as easy as walking down to the supermarket and buying some? Please stop being so naive.
The IV version costs $34k, I’m not sure that it was be covered by insurance off-label for PFS, and for post partum depression it is administered for 60 hours continuously. It isn’t clear at all how the IV version would work for PFS. If you want to solve this challenge, you are free to see if a doctor will prescribe you brexanolone therapy and see if you can get insured for it.
Otherwise we will have to wait for Sage 217 which is the pill version. The pill is being tested for major depression which will be much easier to get prescribed and insured than Brexanolone which is only approved now for post partum depression. Harder to demonstrate you have PPD as a male.
I strongly can’t support you accusing the PFS Foundation of being well-connected to Merck. It’s completely wrong and there’s no reason to even remotely suspect that. A lot of guys on here are paranoid and don’t know what to do so they start accusing all these people of being Merck agents and it really harms the credibility of PFS patients as a whole because it makes them all seem crazy.
Like I’ve said, the legal option has already been pursued en masse. You can search the forum for the thread that talks about this. You can try on your own to do this but you took Propecia after 2012 which makes your case even harder.