2012 Scientific Research Initiatives into the Post-Finasteride Syndrome - DISCUSSION THREAD

Science PFS Research
#161

Thanks for the update, Awor. I agree about the importance of donating to the foundation.

I know you may not have time to respond, and if you do you may not want to commit to an answer, but at this point is there a rough timetable for the publication of any of the studies – particularly the penile skin biopsy study and the neurosteroid study, both of which from your updates looked to be the furthest along and were going to be first in line for publication? I realize you may not want to commit to dates since there are a lot of uncontrollable factors with getting the studies published, but with the roundtable discussion on finasteride side effects happening in February in Italy, it would of course be ideal if one or both of these studies could be published by then. Any chance of that happening?

All that said, while the delays are frustrating, I know you’re doing your best and that everyone here appreciates all the work you’re doing. Thanks very much for your continued efforts.

#162

I just had contact today with the one of the team members that did the penile tissue study. He reiterated that they are working on getting the data published. But they are also subject to factors beyond their control (peer review, journal acceptance). So no time frame on that one.

We can be pretty sure that the neurosteroid data will be made public in some form in time for the Feb. conference, because it will be presented there.

#163

In other words: donate to the PFS foundation and contribute to research as we are most likely going to be stuck like this for years if not indefinately… great how life turned out.

#164

There are other in-depth research initiatives going on outside of the PFS Foundation research world. So keep your head up :slight_smile:

#165

BP, def keep your head up. I think we are definitely at least narrowing down what’s going on and I think the neurosteroid publication is going to give some important clues. We are moving out of the dark ages and I for one am desperately trying to get more awareness. More and more doctors are hearing a out PFS such has NYC own Darius Paduch. I am desperately trying to get Deborah A Finn involved in this. Google her, she is an ENORMOUS contributor to neurological studies and effects of blocking Nuerosteroids. Check out her paper, “a new look at the 5alpha reductase inhibitor finasteride”. She is a major source of knowledge. Hang in there

#166

Awor,
As far as funding goes do you believe that there is anyway we could qualify for NHIS/government funding once a little more information is known about our problem and if so how soon can we apply? I would believe that we would especially if are problem still seems to work along the lines with cancer research.

#167

I work in the NHS and am very happy to help with funding applications etc. should we reach this point. I suspect that we need to build some momentum first, which can be helped by all members getting behind the Foundation website and giving money. I’ve not told many people about the problem, but some close friends know and I’m sure they will be happy to donate as well so I will speak to them - and urge others to raise awareness of the Foundation as well.

Awor (or others involved in the Foundation): do we know how much we need to raise? Funding is always easier if there’s a clear figure, whereas people may be reluctant to give unless they know where it’s going. It would be great if we could say how much each research project (ongoing or planned) costs, whether there is a funding gap and if so how much.

I’d also like to thank everyone who has been involved in setting up the Foundation, getting research organised and/or raising awareness with the general public/scientific community. Suffering from PFS is a terribly lonely and despairing condition, and I don’t think we can do much in isolation. However, the thing that does give hope is the knowledge that others in the same position are being positive and trying to help. It must feel like a thankless task, but I think everyone on this forum is incredibly grateful, and it’s good to know we’re not in this alone. So let’s all get busy fund-raising…

#168

[quote=“davey”]
Awor (or others involved in the Foundation): do we know how much we need to raise? Funding is always easier if there’s a clear figure,
quote]

EXACTLY.

We need a clear set of targets per study.I could aimlessly throw 50 into the overall pot and wait, or throw 1000 into a specific one if given a date, a deadline and an outline of what will be carried out in the study.

We need the people from the PFS Foundation to get involved on this forum and interact with the sufferers.

#169

If you look at Dr Crislers forum, he has a bar at the top that shows every month’s donation goal and the amount donated so far. Maybe the Foundation could implement something like that…

allthingsmale.com/forum/forum.php

#170

There are? Where are these taking place?

#171

What could possibly be taking so long to publish this data? There was supposedly some very significant finding regarding neurotransmitters, yet the study is no where to be found. Do we even know who supposedly preformed this study yet? I’m fed up with this. Why does it feel like nothing is happening? And if something is happening, why are we so completely in the dark about it? I struggle with suicidal thoughts every single day of my life from morning until night. I need to know progress is being made. It is cruel to sit on this information for no good reason.

#172

Dont loose hope, Well, why people in the forum are so completely in the dark, has nothing to do, that the scientists and the PFS foundation, don´t want to give the information. But, unpublished, that means in a peer review/ Journal, cant be published on a internet forum. Sadly it is like that, Awor tryes to give as much information than even possible and be sure the studies will be published. But the persons, who made a studys has no influence on the publisching date, when the stuy is written and out of his hands. Please, have a look in other forums, you will never find so deep informations, like here. It is sad and the publication is very very important for us. So be sure the PFS Foundation also wants to see the datas published as soon as possible. I feel the same like you and many others here. I struggle with suicidal thoughts every single day of my life, but i would not call it a life anymore. It is just a beening on this world. What keeps me alive is the knowledge, that we are on the right track. I also cant wait to hold the journal in my hands. This is very important for all of us. But, sitting and waiting is wrong, meanwhile we need to fight! We need to fight, to raise media and medical atention. We need to fight to stay on this world and call it life again. We need to fight to hold together and not even fight in the owen rows. One of the biggest promles with PFS is not the shrunken dick…its that we loose the motivation the drive and this feeling of being passiv. This stops many of us. So everyday is a fight! Do what ever you can do to support people in the forum, to support the foundation and to support yourself. I am 100% sure we can find a cure but not with beeing passiv. This is my motivation. Do whatever you can to help others and to help yourself. The suicidal thoughts are not you, it is that fucking drug! Fight, my fiends!

#173

The fact that we know absolutely nothing of the results of the data they have collected is disconcerting. It is not uncommon in the medical world to let slip out the basic results without revealing the whole information about the experiment. For example when putting together a journal entry it is not uncommon to reference unpublished work.

I wonder what the hold up is?

#174

you speak out of my mind that’s exactly what I was thinking about the whole process. I mean february is pretty near. And nothing has been published so far.

#175

This one is online so it should be allowed to paste it

Preliminary Evidence of a Peculiar Hormonal Profile in Men with
Adverse Effects After Use of Finasteride Against Androgenetic Alopecia
F. La Marra1, C. Di Loreto1, G. Mazzon2, G. Chiriacò2, C. Trombetta2, S. Cauci1
1Dipartimento di Scienze Mediche e Biologiche, Università di Udine, Udine, Italy;
2Clinica Urologica, Università di Trieste, Trieste, Italy
Background: Finasteride is a 5-alpha-reductase inhibitor that impairs the conversion
of testosterone (T) to dihydrotestosterone (DHT). At dosage of 1 mg/die finasteride is
succefully used against androgenetic alopecia. In young men finasteride used
against hair loss is reported to provoke reversible sexual side effects. However,
some very recent reports highlighted long-term persistence of sexual dysfunctions.
We aimed to hormonally characterize 9 patients with long-term post-finasteride
syndrome. Methods: Nine patients (36 ± 5 years old) with persistent (over 6
months) adverse effects including erectile dysfunction, infertility and depression, and
10 healthy matched controls were enrolled. Testosterone, lutenizing hormone (LH),
follicle stimulating hormone (FSH), estradiol (E2), progesterone and prolactin levels
were evaluated in morning serum of all subjects. Results: Testosterone
concentrations did not differ in cases and controls, P = 0.74. However, LH was 2-fold
lower in cases (P = 0.03), whereas FSH was not statistically different between
groups. Interestingly, the ratio of T/LH was 1.8-fold higher in cases than in healthy
controls (P = 0.04). Conclusions: A concerning evidence is accumulating on severe
long-term consequences of finasteride use in less than 50 years-old men. The
percentage of subjects having post-finasteride syndrome is still to be determined and
reasons of such persistent effects are unknown. We were the first to determine a
peculiar hormonal profile in these patients suggesting an impairment of the
endocrine interplay of hypothalamus, pituitary and the testis, which specifically
dampens only one of the gonadotrophins released from the pituitary gland, i. e. LH.
download.journals.elsevierhealth … 005664.pdf

#176

hopefully they are doing more complex tests in near future like the nervous system 'cause somehow I doubt it’s just a hormonic problem, we all tested years ago for lh, fsh etc. and there are still lots of men who have no issues with this.

#177

There’s a conference, in February, on the effect of Finasteride on the Nervous system. Some results on neurosteroids have already been investigated. Persistent reduction of allopreganolone, dht…

Anyway, low LH in respect of controls, doesn’t mean LH is out of range. It means only that it is lower than the mean despite the normal T values. Which might be of some interest in the characterization of our situation.

#178

Hello everyone

I write here because I want to encourage you if you haven’t already to donate to the PFS foundation. I have been suffering now for 5 years and I have personally tried every available resource from increasing testosterone, antibiotics, reducing estrogen, increasing progesterone, lidocaine infusions, niacin, thyroid, dexamethasone, heavy exercise etc and have only found mild benefit. Luckily I didn’t overdo anything and have (touch wood) done no damage by this.

The fact is things have progressed in these years and now there is a non profit organisation who wishes to help us! I get the feeling a lot of people are sticking it out themselves and will follow a similar path as myself hoping for the best. I believe our problem is solvable but a trial and error remedy has not proved fruitful for most of us. We do not have all the information we need to solve it. This can only come through research.

There are those who are skeptical of the research direction but I ask you to consider that these are real scientists who would only pursue a line of thinking if it was useful. Do you really believe your knowledge is better than a team of research scientists? As a doctor I know even mine isn’t.

If we delay then it will take longer before a cure becomes apparent. Together we can find solutions. If we pool resources I can see progress being made in a year or so. This isn’t an instant fix and these things do take time. I suppose it’s like the hare and tortoise.

Slowly and surely.

So please donate if you are able and raise money. The future is up to us now.

pfsfoundation.org/donate/

#179

what i don’t understand is why all these scientists that claim they’re studying pfs don’t give even a single advice, not an official one, just a suggestion about what to do or try. I just want to heal and if these scientists think they have found the root of the problem why don’t they suggest anything? Ok, they have to prove what they think, but even if they was wrong who cares, i mean i took finasteride, i can try whatever i want now that it will not damage me as finasteride did, i am willing to be a guinea pig for these scientists, but what i read about these scientists is that they just want to prove they’re right etc. i don’t give a shit about it, i have donated to have a cure for me, not to give doctors success, i want to heal, sincerely i don’t need to know what’s wrong with me now. And i think everyone feels like me, we are paying these scientists’ researches, if they are right they will have success with our money, we need something in return that is that they have to do the best they can to find a cure, that is the key point , a cure nothing else.

#180

They haven’t pinned down the exact cause yet… they feel they are on the right track in the direction they are currently looking but there is still much that needs to be uncovered. Most doctors will prescribe the most conservative treatments available, its not surprising they are reluctant to jump the gun on this one.