Participation in the BWH research!!

Science PFS Research
#1

Guys -
I just got back from Boston. I have a gaping hole in my shoulder, and a smaller one near my crotch. I spent the whole day at BWH undergoing different types of tests. The best thing I can report is the researchers I talked to all seemed hopeful. They won’t, or can’t make any promises, but they are hopeful.

They do have a shortage of men signed up for the study however. ESPECIALLY men that took Propecia, stopped, and had NO side effects. They have enough PFS guys, and guys that never took Propecia, but if you know anyone that has taken Propecia and stopped, and not gotten PFS…they need them for the study.

#2

Wow…what does that say…must be tons of men affected, others still taking propecia without sides…yet, and so where are all the success stories such as “I took propecia for a few years, stopped and feel great”

#3

And aren’t they forgetting one group? Guys that took and still take finasteride?

#4

The question now is what are we able to do about this quickly, easily and cheaply. Ideas:

  • Any local members could seriously help by printing and posting the flyers in relevant places. Colleges, shops that have public notice boards, libraries, sports grounds, etc.
  • Go onto websites relating to men’s health and register an account, make a post with the details from the flyer. Be sure that you don’t write your post in a way that makes it look like spam.
  • Find local news websites and post up in their forums with the details from the flyer.
  • Contact the local news websites and see if they will run a story on their site.
  • See if any local news website will allow a (cheap) advert to be taken out in their online site or print publication.
#5

Thanks for the update, Jorbie. Glad to hear Harvard is living up to it’s reputation as one of the world’s leading medical institutions. (Though I wouldn’t expect anything less.)

I also have newfound respect for the Post-Finasteride Syndrome Foundation. They’re living up to their word by helping the medical community get to the root of the finasteride nightmare. Later today, I am going to make a large donation.

Meanwhile, my fingers are crossed that by the end of 2014, there IS scientific evidence that finasteride is the cause of PFS.

#6

Jorbie, thanks to you and everyone who has participated in either study. I called BWH last week and was told that any participant would need to complete 2 visits to Boston by the end of the year. Unfortunately, given my work and family situation, I can make one trip, at most. I plan to call Baylor tomorrow.

#7

I spoke with some people about possibly taking part, but unfortunately due to short-term anti-depressant use, I was ineligible. It sounds like they believe the study will be peer-reviewed and published within about 12 months (from what they told me). Also, the Baylor study is one day, as opposed to multiple days (with the third day being optional) at BWH.

Glad to hear people are participating. We have made exponential progress in the last 18 months. There wasn’t even a foundation prior to 18 months ago… now this. So… things are definitely looking up. :slight_smile:

#8

I wonder will they find the root cause of the problem ?

#9

Just a thought, and maybe not a great one, but if we are looking for people that took propecia, stopped and had no sides, what about asking people on hairloss sites? There seem to be a number of “propecia doesn’t cause sides” apologists on those things. Whether they would be willing to participate may be an issue.

#10

Cause they’re all the doctors selling it.

#11

I would imagine that the issues with getting former propecia users who are “healthy” are as follows:

(a) If they really did have no side effects, why did the stop taking it? In other words, maybe they’re in denial about having PFS.

(b) If they really did have no side effects and did stop taking it for whatever reason, what’s their motivation for enduring three days of testing that probably includes biopsies and MRIs? Remember: this is no high-school project; this Harvard Medical School, so we can assume they’re being very thorough.

But it is ironic that BWH is apparently short on former propecia users with clean bills of health. That seems to run contrary to Merck’s claims.

#12

Well for (b) you could argue the same for healthy subjects who haven’t taken the drug, however since they have decent supply of those there must be some remuneration.

Honestly think there will be a huge influx of problems once a new hairloss treatment is released and propecia users try to switch. Those still on the drug may just have their problems masked for the time being. Side-Effects such as reduced libido/watery ejaculation are fairly common and frequently discussed on hairloss forums, but it’s not enough while you’re on the drug for it to be an issue.

#13

Agreed: Propecia is a time bomb that is certain to blow up in Merck’s face within the next few years.

#14

the worst part is that there will be more innocent people hurt before any appropriate action or justice is served, all for profits … sickening

#15

If all of the propecia users in the world stop taking propecia, I guarantee that the number
of sufferers will quickly go from the thousands to the hundreds
of thousands and possibly into the millions.

#16

Let’s be reasonable. This is a huge overestimate.

#17

Although they’ve been pegged as the mortal enemy by folks on here, hairloss forums would be a good place to look for recruits of those who have taken Propecia and stopped.

#18

Do you know the projected sample size for each group? At Baylor, they’re wanting 25 in the PFS group and 25 in the control group (men coming in for circumcision).

#19

A couple things about the BWH research:

  1. They don’t take penile tissue, they take pubic tissue. They took mine right from the top of the pubic hair line. Very painless.
  2. You get paid $800 dollars for participating in the research. Something to mention in the hairloss forums as BWH is still looking for men that took Propecia, stopped, and now have no side effects.
#20

Thank you for your updates Jorbie.

Interesting that they have chosen to take tissue from the lower abdomen instead of the genitals. Given that penile anesthesia is such a prevalent symptom, surely tissue from the affected area would be of greater value to study?

Perhaps they have found the pubic region to be an adequate sample area in preliminary tests. It may well have been chosen to facilitate a broader range of control volunteers - few men would agree to any sort of penile biopsy without good reason.

Did they say anything further on the matter?