Propeciahelp members, both new and old are more often than not crying out in desperation for anything they could try to take to improve their symptoms.
While the oft-cited standard response reads something along the lines of ‘xxx had crashed/been made worse by taking that substance’ is judicious, it does not ameliorate the drive the person has to do something to make themselves better.
This forum generally excels at providing caution, and while it appears to be an ethical approach upon first-order examination, I’m starting to feel that it rarely convinces the said individual to simply wait for an indefinite amount of time for a possible cure or treatment to be found. Thus it’s often ineffective at dissuading the person from simply reading a thread with no scientific understanding of any theory behind PFS and the risk factors, and deciding instead to take a substance an abundant and impassioned poster vouches for.
Often they take a substance which makes them worse, in spite of prior warnings by the admins and other well-informed members.
I am not here to preach, however I feel the forum could do a better job of providing members a ‘best practice’ guide to the track record of various substances, untainted by subjective and anecdotal biases. The survey has allowed this data to get meaningfully recorded. In addition we have reels upon reels of previous posts over the past decade which document people’s experiences with various substances.
I know the forum admins did at one point mention that this was ‘in the works’, and there was an effort to attempt to categorise different forms of PFS based on symptoms, whether a crash occurred and reactions to various substances, I feel this is a pressing priority as I see quite a number of forum members willing to dabble with substances of a very risky nature.
I am aware that many substances do fit this category, especially amongst sufferers with severe symptoms, but even still, as a forum who’s mission and purpose is to aid sufferers, we need to provide the hard numbers to users.
For instance, recently I have noticed a bit of discussion swirling around about Bupropion (Wellbutrin). Many are strongly attempting to dissuade members from trying out the drug whilst instead pushing them towards riskier hormonal interventions such as TRT and Clomid. They cite a few examples of people who got worse on Bupropion while overlooking the abundance of accounts of it dramatically improving sufferers like few other treatments. If one investigates the abundance of accounts of it improving patients compared to making patients significantly worse it seems to easily outperform any form of hormonal treatment or essentially any other substance people have taken, perhaps with the exception of Tribulus (which still appears to have a higher number of people who have reported deterioration).
I feel this is long overdue and has the potential to save lives.
I think there is near universal consensus amongst the admins that a bespoke genetic treatment/cure for PFS is several years away at the very best, in light of the glacial pace at which the research is moving to even uncover the fundamental mechanisms behind our condition. Not to mention that it’s likely that the treatment will have it’s own set of risks given the diversity of PFS affected sites and levels of severity, and the potential for genetic treatments to inflict off-target ‘collateral damage’.
I suppose its a case of ‘picking our poison’. At least we should be able to do so in a clear and informed manner.