New PFS study publication

General Discussion
#1

Int J Biol Markers. 2014 May 17:0. doi: 10.5301/jbm.5000095. [Epub ahead of print]

A pharmacogenetic survey of androgen receptor (CAG)n and (GGN)n polymorphisms in patients experiencing long term side effects after finasteride discontinuation.

Cecchin E1, De Mattia E, Mazzon G, Cauci S, Trombetta C, Toffoli G.
Author information

Abstract
Finasteride is a steroid 5-alpha-reductase inhibitor, approved for the treatment of androgenetic alopecia (AGA) and benign prostate hyperplasia. In some patients the treatment is associated with adverse side effects that could become persistent after therapy discontinuation, resulting in the so-called post-finasteride syndrome (PFS). A pharmacogenetic component in the response to finasteride treatment was previously demonstrated. Two polymorphisms (CAG) rs4045402 and (GGN) rs3138869 in the gene encoding for the androgen receptor (AR) have been hypothesized to play a role in finasteride sensitivity. We aimed to compare the rs4045402 and rs3138869 polymorphisms prevalence in a group of 69 selected subjects (AGA+PFS) that used finasteride to treat alopecia and developed persistent side effects, with that in a group of 91 untreated subjects with AGA (AGA), and a group of 76 untreated subjects without AGA (NO-AGA). The rs4045402 and rs3138869 polymorphisms extreme-lengths alleles were more frequent among AGA+PFS (odds ratio, 5.88; 95% CI, 1.87-18.52) and AGA subjects (odds ratio, 3.55; 95% CI, 1.13-11.21) than among NO-AGA subjects, probably reflecting the genetic predisposing factors for AGA development. In conclusion, we described a predictive effect of the less common repeats’ length CAG-rs4045402 and GGN-rs3138869 on AGA development. Prospective trials are required to confirm our findings also in other ethnicities, and to highlight possible further pharmacogenetic predictive markers of susceptibility to adverse effects.

#2

So ive just searched my genome on 23andme and i couldnt find those snps…i guess they aren’t tested?

#3

So what does it mean simply?

#4

It means you should participate in the studies and donate if you can.

The scientists are working on figuring out the problem, thats the only way we’ll understand what is going on. Already they have found indications of our disorder. But still, so many guys here think they are smarter than MDs and PhD that are using multimillion dollars resources to conduct studies to figure out our problem. The sad thing is that they studies are on-going and the problem we are having is getting people to participate - which is slowing us down a lot. Awor is right that people have this stupid “save your own buns” mentality and that they think some stupid supplement will cure them. Look at the progesterone forum that light-at-the-end started. A bunch of you just jumped on that and for all you know you could be making yourselves worse (progesterone is a 5ar inhibitor). Light-at-the-end started going to the gym days after he crashed, and in the end he recovered within a year. To me, it seems like light-at-the-end did not have such a severe case of PFS and thus was able to recover, and he likely recovered without the help of progesterone. I was in such a bad shape I couldn’t get to the gym or do anything for at least a month after my crash. Nevertheless, I have yet to see one person replicate light-at-the-end’s success. I’m not trying to crush your hope, but realize some people may have just been able to recover and their protocol will not work for you.

For the sake of all of us, if you are eligible, get to BWH or Baylor and participate in one of the studies and do it as soon as you can. The scientists are waiting to finish the two studies so they can get together and consult on the big picture of PFS, which will mean further research and possible treatment. You are getting reimbursed for traveling expenses, so you can’t use the excuse that you cannot afford it, and it will only take one day of your time. Don’t assume another person will go, go your self.

#5

I can’t reiterate DGreene’s point enough. To think of it another way - the only way we can prove in a court of law that Fin caused all of these problems is if we get these studies (and others that will follow) published. And THAT only happens if we get enough guys involved in the study. If you can’t afford the trip - perhaps the Foundation will fund it, or PM me and I will pay for your flight and lodging. Please - this is our best chance - likely our only chance - of getting this fucked up syndrome cured - and no one is participating in the research.

#6

I’m in Ireland.i am currently studying for exams and have been for the last couple of months.i can’t travel at the moment.i will contact the studies when my exams are finished at the start of June.

#7

There seems to be mass psychosis going on here. People have been wasting their time jumping from progesterone, to fasting, to weight lifting, to herbal supplements, back and forth. For years this has been going on, and these people think its not worth their time to go to some of the best medical research institutions in the world to participate in studies that will benefit them. I just don’t see why they won’t go. Its entirely confidential, if thats what you’re worried about.

To me it says that these people are willing to accept to live like this for the rest of their lives if they’re not participating in the research. We only needed 25 people. Just 25 out of the hundreds on here. How would you guys like it if the researchers said “Well, if people aren’t participating in the research, I guess PFS isn’t that bad or its not that big of a problem. Looks like there’s no point in researching it.”

#8

jorbie and dgreene, I completely agree with both of you. I applied for the study a few months ago, but the response which said that some costs must be financed by the patient deterred me, as I can’t afford it I’m afraid. I’m aware now that the foundation may be able to help with any costs, so I’m going to contact them this week to ask about that and see if I’m eligible. I live in the UK, so travel will not be cheap, but I’m going to put myself forward anyway.

Please guys, contact the foundation and at least find out if you’re eligible.

Do it for Dr Daniel.
Do it for Randy Santmann.
Do it for John Pfaff.
Do it for the unquantifiable number of men in pain every day; their lives shattered and families broken.
Do it for yourself.

#9

If you need traveling expenses paid or help scheduling to participate contact Philip Roberts:

Philip Roberts
(856) 425-6046
Media@PFSFoundation.org

#10

I talked to him yesterday and he helped to persuade me :slight_smile:. I will keep this thread updated about developments.

#11

Also if anyone else wants to participate, let’s do it! Why not get a group of us go together and we can make a trip of it haha

#12

People, if you are eligible for these studies and have trouble funding the travel, accommodation etc., please apply anyway. In the end, when push comes to shove I am sure the foundation and members of Propeciahelp will help to pay for this. I am willing to make extra donations to make trips possible to complete these studies and I am sure others would do the same. These studies are extremely important. If we fail to show up, we will never know.

#13

Haha, I like your attitude! And I am glad you have decided to participate. Thank you!

#14

:sunglasses:

Who knows, maybe they only need a few more and we can get this thing done before 2015.

#15

Not only will the Foundation help pay for travel expenses…but you also GET paid to participate in the studies. I got a check for $800. If money is your only reason for not doing - contact Philip Roberts and sign up for a study so we can get this cured!

#16

Great information guys! Remember - we are all on the same team. I don’t see why we can’t support the foundation, and if we wish, try different protocols ourselves; they’re not mutually exclusive.

Thanks for all your hard work!

#17

I contacted BWH in November 2013 and found out I was an eligible candidate based on my pre-screening answers. However, I was told I would need to complete 2 trips to Boston by the end of that year in order to participate. Based on my schedule at the time, I could only make 1 trip in that 2 month window so I never followed through. Now people on this site are saying more participants are needed. Anyone able to explain?

#18

I don’t think anyone here knows anything. It’s probably best to call them or the Foundation again. Awor - who is involved in the research - mentioned a couple of weeks ago that they still needed more people to participate. So maybe recruiting did not turn out as expected, they changed the schedule accordingly and you could participate now.

#19

I agree with what Northern Star said, please re-contact them and see if you can now be involved.

It could be a similar case for other patients - I wonder if there are others where they have applied and were advised that they had to get there within a certain time frame. But they were not able to make it, so they didn’t attend.

It would be great if someone at the PFS Foundation could check into this with the people dealing with the recruitment for the studies. I.e. they would query on their database/records for (1) the candidates who were deemed eligible (2) who were then issued the timeframes (3) who then did not attend.

#20

I agree with this. If I didn’t check the forums I wouldn’t know that I could get help with costs. Maybe it’s not just PFS sufferers at fault here then? Surely it’s in everyone’s interest to actively pursue those who have shown interest, and reassure them about any concerns.

This is what put me off from the email I received when I enquired:

One important question that many potential study participants ask concerns costs. Please be aware that the bulk of the costs associated with this study (i.e. clinic visit, majority of blood work, penile ultrasound, and biothesiometry) will be billed to your insurance or will be your responsibility in the event you do not have insurance.