So this is more of a question to the administration here. If this website is for the victims of finestride, why are these people who never took finestride on here. Doesn’t that mess up the accuracy of the victims affected my finestride?
The only people on here who never took Fin are patients who suffer from similar persistent side effects caused by anti-depressants, Isotretinoin or anti-androgenic supplements. The forum staff strongly suspects that all these patients suffer from the same condition as all these substances share anti-androgenic properties.
However, we encourage all people to share what substance has brought them here to be able to separate between the patient groups if necessary.
See I understand that your giving these people a voice too. But SSRI have been already documented to sexual side effects. The nature of this website I believe should strictly be used for people that have used finasteride, with the intentions of producing more research material in hopes of a cure, or atleast a acknowledgement of this horrible disease. Having other people, with respect to, would take some of that attention away and possibly delay results.
It’s not only about giving them a voice. The strategic goal is to confirm and establish that all these side effects are caused by the same condition, which would make it a far more important problem affecting a far bigger population, which would make it easier to raise funds.
This strategic goal is not in the way of doing studies focusing exclusively on PFS patients, which is what we are currently doing as long as the link between the conditions is not yet established. The membership rules of this forum are irrelevant to this research as we only select Finasteride patients for the study.
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See that doesn’t make sense, if your goal is to shown that ALL of these medications produce the same effects, then why even call this place propeciahelp in the first place. Why not something that was inclusive of everyone to begin with? The website is called Propeciahelp, which by the very title showns the focus is on finestride
This forum is over 15 years old. 15 years ago, when this forum was named, the idea that all these substances cause the same condition did not exist in the minds of the founders of this forum. Since then our understanding of PFS and its connection to side effects caused by other substances has evolved.
We definitely expect that PFS will be called something else in the future, and that our organisation and this forum will be renamed. But since a new definitive name for this condition has not yet been established and since the name of this forum is well known, we will only change it once a new definitive name for this forum has been found.
I think that makes a lot of sense. It’s too bad if you disagree, but that is the point of view of the people who run this forum.
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You understand that both PFS and PSSD go way beyond persistent sexual sides right? So neither of those have been acknowledged to their full extent by any non-affected community. Warnings about persistent sexual effects are already documented by Merck, albeit negligently framed as a ‘postmarketing’ afterthought. Both communities have as much to gain from insight into the full scope of the condition as the other.
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Look I get all of what yall are saying. All I’m saying is I think this website is being used wrong. Like it has amazing potential for researcher to narrow down the persistent side effects finasteride and help advance a possible cure for us
I always consider PFS as PADS (Post androgen deprivation syndrome)
I have an appointment with an endocrinologist in 3 weeks and I will be discussing finasteride with him but also DIM which hurt me and is a DHT blocker and Tribulus which contains beta sitosterol found in Saw Palmetto which damaged me too.
We have considered this name as well, but the future name may be more specific. Anyway, it also depends what the research will show.
See that makes more sense. Like I just don’t understand If this place started from finestride why is everyone else here. Especially people who never even took finestride!
Because there is a common aggregate symptomatic profile among the post-drug patient groups featured on this site.
There was discussion of changing the site/forum name years ago to be more inclusive of patients brought here by other substances but that was abandoned, primarily, over the fact that the propeciahelp “brand” is long-established and has been featured in the media and in scientific articles.
It was also decided to be unacceptable to refer to this condition as post-androgen deprivation syndrome (PADS) without near-irrefutable evidence that the moniker accurately represents the nature of this condition. On the same token, it was decided that overwhelming evidence that we all suffer from the same tentatively-named syndrome wasn’t necessary for encouraging those who took something other than Propecia to join the forum discussion for the sake of supporting each other and working toward finding a common etiology
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can you explain how non fin victims are impeding our efforts?
are you saying that we are comingling the scientific studies and therefore compromising the results by collecting tissue samples from pssd/pas victims?
I’m saying that the this site was originally for men who took finestride and got sexual side effects. With respect to the other group why jot just stay on the group who took finestride so it’ll be easier to try to find the similarly between each person who took the same drug?
I’m sorry. I’m not getting it. The PFS studies only include those who used finasteride or dutasteride. Also, the aforementioned categorization of patients on this site according to what drug class they took prevents confusing people who took finasteride with those who used other substances.
For example some people here just have sexual side effects, some have a whole variety of side effects but both people took the same drug. I’m sure a researchers this can narrow down any other possible outside that could contribute to either person symptoms. But when you start adding other people that can get tricking cause now they have to look at every form in detail to see what drug each person took
I get what you’re saying but you are providing ZERO reasons as to why it’s better than what we’re doing as a collective group
Help me understand that part
How does collaborating hurt us, exactly?
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Okay so you’re saying that if we do studies with pssd and PFS victims, the results would be inaccurate, right?
FYI: The “A, D, F, G, I, S” badges beside each member’s name in forum posts represent the Antidepressant, Dutasteride, Finasteride, GnRHa, Isotretinon, and Saw Palmetto groups, respectively.
You can also open a member’s profile to view which substance inflicted them with persistent side effects.
Bottom line is that there is no intention of changing the membership base without a very compelling reason.
