What the PFS foundation should have done

General Discussion Media & Awareness
#21

I agree: direct awareness to doctors is important.

And here’s an idea to get their attention:

Solicit the full, real names of the doctors who prescribed Propecia the PFS victims on this forum. Ask all forum members to scan in one prescription record (with the patient’s name blacked out) along with the full name and location of the doctor in text form.

Once you have, say, 50 names/prescription records, publish them on a blog, along with a warning to steer clear of those doctors.

If you keep growing the list – and tweeting about it – eventually some member of the media is going to write about the blog, and perhaps even call some of those doctors for comment.

That will put the fear of god into those doctors, knowing they have been outed for prescribing a drug that in certain cases causes irreparable harm.

It’s a simple project. But do any of you have the wherewithal to take it on and keep it going?

#22

I know the names of two who have prescribed it in the UK, one current and one who has now retired. I wasn’t prescribed the drug by them but I know they’re selling it online to “customers” who they don’t even see in person! Further, there’s a “middle man” drug pusher who promotes those docs on his website and in his emails.

#23

My guess is that 99% of GPs would prescribe it.

#24

You can’t get it in the UK through the NHS. That’s why private docs and their pimps are cashing in.

#25

General theories is nice, but we need substance.

Like with this petition:

petitions.moveon.org/sign/merck- … rce=search

At some point, it was just one person. Now it’s closing in on 700.

The point is, someone needs to get the ball rolling – with specific names of doctors backed up by your prescription records and testimony (or better yet, additional medical records) that you have PFS.

Even if such a list stopped one doctor from prescribing Propecia, that’s potentially one life the can be saved.

#26

Although you can’t get it through the NHS, NHS GPs can still give you a private prescription - that’s how I latterly got mine. I don’t blame my GP for this as I hadn’t correlated propecia with side effects at that time and she was just supporting me in my own naive decisions. She says now that she feels bad that she was in any way contributory to my own negative experiences with the drug, although I can’t blame her as she was only supporting a prescribing choice of a patient with an approved medication. At least it has helped to raise awareness with her. There will be many doctors like her who will be hearing individual horror stories and hopefully impacting on their future prescribing decisions. I appreciate however that for many their doctor’s have been anything from negligent to criminal in their actions.

#27

Can any studies show
1- why while on Fin or right after stopping for some people their testosterone is higher than normal but despite this they feel awful, a lot of fatigue and numbness. I have read many forums like these on many forums.

2-Why people keep getting worse and worse months and years after stopping it.

3- why DHT does not work. Why some people complained negative sides for DHT like more shrinkage and numbness from DHT

4-why our nipples burn like a peeled wound. I have got up many times from pain in my nipples. I felt like somebody scratched my nipple and then sprinkled pepper on it.
5- why our body is rejecting testosterone. why some people who were already on TRT and used Fin not they can not take the same amount of T injections because they feel awful. They have to take less quantity of T injections now.
6-Why some of us are getting water retention from TRT or even without TRT (from natural T production)

There are many more whys as well.

#28

pfsf is our hope but this sick is very serious and we must increase our hope with much research much doctors pfsf research are good but we need much to find something the problem how to make much research imo we must mail our government or healt foundation to make something for us pfsf is good but this ill bad we need more help we are near death this research take too much time and hope is …

#29

Speaking of the foundation, I just noticed that they posted a lot of new peripheral research abstracts on their website.

Here: pfsfoundation.org/

And here: pfsfoundation.org/published-research/

The abstracts on the home page alone would seem enough to convince any reasonable human being that there is in fact a causative link between finasteride use and PFS.

#30

Especially Dr. Thraishs study a bit scary… he says fin may cause irreversible damage on CNS.