In my opinion, we are taking the wrong approach

#1

If we continue to blame the drugs, research will always be hampered. It is evident that most of the subjects who take Finasteride, SSRIs, Accutane, etc … do not have irreversible symptoms. It must necessarily be a certain predisposition or a triggering factor that is independent of the drug alone. The names PFS, PSSD, PAS are wrong. Perhaps even the name of the forum should be reviewed. We have to make sure that the pharmaceutical companies do not see us as a threat. This is my thought.

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#2

Interesting…
Even it sounds strange, I’m 100% agree with you. I’m those who suffering after quiting this drug ( anxiety) but I know that I represent a little number of users.
Unfortunatelly , I’m not sure that even the pharmaceutical companies do see us as a threat it changes anything… Too few users suffer from Side effect.

#3

irregular use is a big trigger in finasteride. taking breaks and so on

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#4

This site was revamped and relaunched last year with consideration that PFS, PSSD, PAS, and other similar post-drug conditions are essentially the same thing. We are approaching this as if this condition is independent of which substance and only occurs in a rare and unlucky subset of people.

The recently unveiled survey system is meant to identify the true overlap in symptom profile being that we already know of many shared symptoms among our patient groups after years of anecdotal reporting.

I’ve also shared your view that we would encounter much less resistance if our condition was not linked to use of pharmaceuticals. If it was some spontaneous illness that suddenly manifested, we would not need to worry about the research community denying us the investigation we deserve for fear of biting the hand that feeds. In any case, the cat is already out of the bag.

I think if the PFS research finds a potential trigger mechanism, we can come together to focus on that, rather than the particular drugs themselves.

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#5

In the discussion of the research of the Beylor University, users discussed the fact that Khera worked with Merck and therefore they are all afraid that it may have been corrupted by Big Pharma. Merck would not be afraid if the research finds the problem in us, without accusing his drug, because he should not pay compensation.

#6

Yes, that’s exactly what I meant to say.

#7

i see your point but in fact it was the Drug that triggered our condition. without the use of the drug we would have NEVER get that. but yes could be a possibility that merck does not have to corrupt our studies… what a sad world. im glad that i will never ever bring children into a world like this.

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#8

i know its rare. but you see that 5000 + people suffer from this conditions. and none of these drugs are life saving.

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#9

Yes, there is no excuse for it. Informed consent prior to taking one of these drugs is a joke when this condition is whitewashed or totally denied.

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#10

In the course of something i’m writing on I came across a statement in a scientific paper that a certain drug in development would be likely to extend the lives of boys affected by a deadly genetic condition, but before consideration for its use it must provide clear evidence of both perfect safety and specificity of tissue due to the potential for negative effects on genitalia. I would think the bar would be enormously higher for cosmetics than life saving treatments, but apparently it’s remarkably lower. Both Finasteride and Accutane have demonstrated neither.

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