Fantastic post, X! I hope everyone here reads it and, more importantly, acts on it.
Xhorndog,
While I commend you for the amount of thought you invest into your posts, I believe you (and J89 earlier) are coming at this from an emotional perspective. Here is where our thought processes differ:
First of all, this forum has been online since 2006, long before many here had joined.
During that time many posters have come and gone, each with their own motives for joining and posting on this forum. Some may be true sufferers of this syndrome. Others may simply want to stir the pot, due to their hatred for what this site stands for. Others may not even be suffering from Finasteride-related issues, but believe they are. Unfortunately, joining this site is very easy, and this will soon be changing.
There have been users who have joined only to spam various ridiculous theories and red herrings, or make outrageous claims which led NOWHERE, wasting many peopleâs time, money and potentially putting their health at risk. No wonder people are disillusioned, and questioning othersâ credibility. Hopefully, future changes which will be put in place once ready, will help address these issues of credibility and membership.
Itâs not that vast, actually: propeciahelp.com/symptoms
The symptoms of hypogonadism and side effects of androgen deprivation are well-documented in many medical journals.
Finasteride is a 5ARI and anti-androgen medication. The hallmark of Post-Finasteride Syndrome is a post-drug drop in endogeneous Testosterone to near or actual hypogonadal levels, which remains resistant to treatments designed to restore androgenic function in many of these men going forward. WHY? THAT is the mystery. Hence why threads such as THIS exist: viewtopic.php?f=27&t=2216&start=20
This, coupled with the manifested physical (genital shrinkage, complete loss of libido, impotence, loss of noctural/morning/spontaneous erections, muscle atrophy, decreased androgenicity, feminine fat redistribution patterns over months/years and other symptoms noted in link above) and neurological impairments (muscle fasciculations, cognitive decline, loss of drive, emotional blunting etc) all factor into a syndrome which is first and foremost mediated by ANDROGENS and 5AR-derived pathways/inhibition.
PFS is NOT some nebulous concept which extends to every symptom on the planet, or can be correlated with every malady on the planet. PFS is quite clear in the shared common symptoms as noted above, timeline of their effect, and consistent hormonal pathology as evidenced in men suffering from the problem (for example, hypogonadal/low Total/Free T, below range 3a-diol G, low LH/FSH, often elevated estradiol, SHBG, TSH).
Regarding 3a-Adiol G, this is interesting: viewtopic.php?t=2763
And so is this: mypropeciasideeffects.com/images/5ar2-deficiency-diagnosis2.jpg
Recently, medical and media awareness has grown, but we need much more â we need scientific research into this problem. This will only ever occur in a lab, if we are able to get scientists interested enough in this problem. For them to investigate this condition, they have to first:
- Believe it exists
- Take it seriously.
- Start from the ground up to understand it
That means: look at what Finasteride does, and review the mechanisms of action behind how or why Finasteride could cause persistent side effects (ie due to androgen deprivation, interference with neurosteroid metabolism, GABAergic system effects, effects on Nitric Oxide Synthase/NO release, prostate involution and apoptosis, shifting androgen/estrogen ratios, collagenous deposits/penile fibrosis due to DHT depletion, and the MANY OTHER DOCUMENTED EFFECTS OF THE DRUG AS ALREADY PUBLISHED ON THIS SITE: viewtopic.php?p=36590#p36590 ) and probably many more papers which are out there.
In order to investigate this problem, we need to, and scientists will, start from the MOST LIKELY causes for the problem, NOT the least likely â and that is BASING THEORIES, IDEAS AND DISCUSSION ON WHAT HAS BEEN PUBLISHED ABOUT FINASTERIDE AND WHAT IT IS KNOWN TO DO â INHIBIT 5AR2 PATHWAYS, REDUCE ANDROGENS (DHT) SYSTEMICALLY, ALTERING HORMONAL RATIOS, AND OTHER DOCUMENTED ACTIONS OF THE DRUG AS NOTED ABOVE AND BELOW.
Otherwise, anyone could just make up any âtheoryâ they want, based on absolutely NOTHING but their own thoughts, not backed up by any evidence or science whatsoever, and propose that as a âhypothesisâ. Trying to get this condition taken seriously under those circumstances only makes us look like a bunch of crazy hypochondriacs, and get you laughed out of a researcherâs office.
Since we already have plenty of published research on what Finasteride does (and if you HAVENâT read through the Finasteride Studies section â viewforum.php?f=8 â, spend some time educating yourself so you understand what the drug does when you take it, and why some of these changes can cause problems in humans and animals), THAT is the basis from which people should be working to figure things out.
Because, a qualified expertâs opinion (ie Traish, Irwig etc â ie, those who are actively interested in solving this problem, and have far more knowledge than we do about how the body works) deserves to be listened to. Or you can choose to ignore it and go off and believe whatever you want, simply because you donât want to hear or accept the truth.
We now have medical professionals (who are FAR MORE QUALIFIED THAN ANY OF US TO COMMENT ON THE PROBLEM) like Dr. Irwig, who has openly stated:
aolhealth.com/2011/03/18/men-report-sexual-impairment-after-using-common-hair-loss-drug/
"Itâs obviously having some effect on the brain," Irwig told AOL Health. âItâs messing up different hormonal pathways. Some of these pathways are important for things like libido and sexual function.â"
Dr. Traish himself notes:
men.webmd.com/news/20110309/sexual-side-effects-of-hair-loss-drugs-persist
"âWe donât really understand why, but the symptoms remain persistent or irreversible and even if they get off the drug,â says study researcher Abdulmaged M. Traish, PhD, a professor of biochemistry at the Boston University School of Medicine. âThey no longer regain what they had before. [Size=4]Biologically, something gets shut off and gets shut off once and for all.[/size]â"
âTraish thinks that may be because nerves that are maintained by dihydrotestosterone become permanently degraded and canât be repaired even after men come off the medication.â
So rather than trust the above, or review these expertsâ papers in detail (excerpts attached to this post), there are always a few who will disagree, and go off theorizing that the problem is âall about candida! Or maybe itâs parasites? maybe itâs âleaky gutâ? maybe itâs this⌠maybe itâs thatâŚâ, none of which is documented to be remotely connected to this medication or its mechanisms of action in over 20 years of use, and certainly not a candidate for consideration by those FAR MORE QUALIFIED to investigate and understand what Finasteride does than any of us.
Such disillusioned talk only reinforces to the outside world and those who have not encountered this issue, that men suffering from this âproblemâ are nuts, the problem is psychosomatic, or worse, that the problem is simply non-existant and made up.
Uh yea, actually it does.
Iâd sure as hell trust the opinion of someone like Dr. Irwig or Traish than an anonymous Internet poster who randomly signs up on a message board, spams that he got cured by âtaking Vitamin XYZâ, and claims the problem isnât so complicated after all.
But hey, if youâd rather believe in dubious diagnoses such as âleaky gutâ and âcandidaâ, when experts have already shared their opinion on possible areas of investigation for persistent Finasteride side effects, then thatâs your perogative.
Once again, please review the FINASTERIDE STUDIES section.
â⌠future trials such as the PCPT and treatment protocols using 5-reductase inhibitors[b] should consider genotyping men for SRD5A2 variants.â[/b]
There are now companies offering hair response screening tests based on androgen receptor CAG repeats (genetic basis for Finasteride response), so you can weigh the side effects risk:
hairdx.com
Yes, we were never told this by Merck/FDA during our usage of the drug. There are no tests to predict who will get side effects from 5AR inhibitors. Perhaps such a test will be developed in teh future â in the meantime, who you going to blame? Take out your anger with litigation instead.
Who you going to blame, your doctor for not being informed, or the FDA/Merck for not informing them or making pre-Finasteride bloodwork mandatory? Again, focus your efforts on holding those accountable, accountable.
There is no test to determine this yet, and there may never be â unless this problem gets researched in THE LAB so they can FIGURE OUT WHY A SUBSET OF MENâS BODIES SHUT DOWN TESTOSTERONE PRODUCTION/ANDROGENIC ACTION WITHIN WEEKS OF QUITTING A 5AR INHIBITOR, WHEN DHT CAME BACK AFTER QUITTING.
And thatâs the whole point of this thread â by posting nonsense which is so far removed and unconnected to Finasteride use, it only hinders, rather than helps this cause.
Not until recently. Labeling changes have been made in Europe and now the USA mentioning persistent ED.
Because rather than theorizing online for hours upon hours with nothing to show for it, through our collective efforts a small portion of the medical community and media is starting to wake up to what this problem is, from taking a 5ARI for what was simply a cosmetic condition at the time of use.
And through that awareness, papers are getting published. And by reviewing, better understanding and studying how Finasteride works and what 5AR inhibition can do to an organism hormonally, epigenetically and at the gene expression level, insights will be gleaned. And through this process, hopefully answers will be uncovered for future testing protocols/risk profiles and treatment.
In the meantime, Iâm not really interested in arguing over opinions. Iâm interested in getting this problem of persistent hypogonadism/loss of androgenic action post-drug taken seriously by researchers, based on scientific facts as already presented.
If you canât understand this and would rather argue about âleaky gutâ and âtoxinsâ as the source of everyoneâs problems, despite statements from experts investigating/publishing on where the issues might lie, then you are no longer arguing with me, you are arguing with them.
Back to your original question about credibility â Iâll take such qualified expertsâ opinions, everytime.
I agree with Mew. We need the research done. And we need to listen to doctors that are interested in our problem. If we want results we all need to get on the same page and push together as a cohesive group. I have seen many theories over the last 4 years and progress has been made. Some people are turning first to the literature to find answers. There have been recoveries - most likely natural ones. This gives us hope. But most of us need a jolt in our system to get there. I have systematically ruled many theories out by treating for them - xyrem - didnât work for me, T3 and prednisolone - nothing, anitbiotics - have helped (i thought on bacterial line for a while here but it didnât add up - most likely an epigenetic effect- also why nystatin many help you), tribulus (to see what would happen with a raised testosterone - the androgen pathways still functional got boosted, the ones that didnât had no change - if anything felt worse. The symptoms of hypogonadism or androgen deprivation syndrome explain ours.
We have a real condition. I was a perfectly functional 19yr old before this. Lets work together to figure it out. This may be in future in terms of funding or getting the information to the wider public.
Youâre just not getting itâŚ
Itâs clear that you have your own set of agendas for this forum and that is not to openly discuss possible cures for PFS. Rather your agenda is to attract researchers and credible doctors to this website. Perhaps you should be a little more upfront about this and maybe put it on the homepage in large letters so thereâs no confusion.
The sooner I realise and acknowledge this fact the sooner I will stop getting my back up every time I read your posts.
So what then is the answer for all of those on this forum who would like to openly discuss topics that are NOT mainstream medicine and not backed by a âpeer group studyâ? (and how far have peer group studies got us in 10 years). Do we need to start another forum?
Iâm not trying to be a smart*ss here, Iâm just trying to find an answer to this constant source of frustration for those who want to think outside of mainstream medicine and research papers.
Mew,
-
I think PFS is vast. That page you link to contains many symptoms, just as the member story section has a long checklist. While there are identifiable patterns and commonalities, there are also those of us that suffer from just a couple of ailments, and those who are bed-ridden. Some of us have gone from one end of the suffering spectrum to the other.
-
Researchers and doctors donât really care what theories online posters discuss. The issue is legitimized when enough sufferers make noise, when clinical studies get published, and this is all thanks to your organization and work, so tip of the hat to you here, in all seriousness. The known actions of the drug are known, docs and researchers can hypothesize from there.
-
You assign more credibility to doctors that agree with your theory. I assure you, that there are other doctors who have different points of view. But you disqualify them because they donât agree with you. This is called confirmation bias. The whole point of my post was to express that I donât know the right path to cure this thing, and I keep going to the top docs on the matter (whose names I no longer publicly disclose) to chase down every lead, rule out none. If you want to mis-characterize my sentiments by claiming that I ever ever said that everyoneâs problems are a leaky gut, well thatâs just wrong.
-
But while weâre at it, to say that a steroid drug couldnât contribute to a leaky gut (and that it doesnât exist) is akin to saying that Celiac disease doesnât exist. You know, Celiac disease (autoimmune / leaky gut situation) which is now finally legitimately linked to infertility, rheumatoid arthritis, vitiligo, hypothyroidism among other things. How you can discount organs and sensitivities and body chemistries of the individual is beyond me. You make it sounds like 5AR2 exists in a bubble, all else is peripheral and insignificant.
-
Well, I know someone, an intelligent PFSer whoâs having regular sex right now. Same age as me. Same duration of taking and quitting the drug. Heâs not completely healed, doesnât claim to be. He regresses here and there. Still has brain fog. But he can get it up for multiple rounds. Still doesnât have his libido back. And heâs doing something that is based on a theory that implicates finasteride as a trigger, but not in a way that is publicly acceptable. Therefore, he has little incentive to post his storyâheâll get crucified; he did get attacked when he âshowed his faceâ. Tell me, if youâre turning things around, and happily fucking again, would you want to get into a daily internet pissing war with depressed, cynical, critical PFSers? Or would you want to stay positive and keep getting your dick stroked? And does it matter to him if some (but not all docs) donât believe him?
-
Yes, I know that the label has been updated years after I quit the drug. Yes, Iâm aware of the legal process. No, my DHT didnât come back online, thatâs an assumption on your part.
-
Yep, attracting awareness and research are crucial. But many of us are chasing treatments now, not 10 years from now. And Iâll keep chasing every lead. Once again, youâll note that I donât push any single theory on this board. And I follow and comment on various threads. Iâm on the phone with and in the office of doctors of every discipline regularly. I want the eyes and insight of as many specialists and integrative practitioners as possible. The health of any of my organs is not independent of my overall health or sexual health for that matter.
-
Finally, I think weâll just agree to disagree. Prostatits, auto-immune dysfunction, however caused, are worth looking into.
-
Ok, that wasnât the bottom line. Although my posts might irritate you, Iâve always appreciated that this forum exists, and all Iâm pushing for is some freedom to discuss w/in threads a personâs particular experience. Nobody will be hurt by pursuing diagnostics suggested in this thread. Messing with the black market drugs referenced in other threads is 100x riskier. Let us just talk, exchange ideas, weâre well aware of the links to 5AR and your position on the matter. I truly do not think that us theorizing (especially if itâs that far-fetched) will draw attention away from your research efforts. Furthermore, if, say 50 of us were selected to be thoroughly examined by a top investigative team of doctors for a week, Iâm pretty sure that in trying to crack the code, they would take a comprehensive medical history, Iâm talking super detailed, in order to screen for some commonality, find some clue as to why we were affected and not others. This canât accurately be done if one only looks at the leading theory of the moment and filters all facts through that screen.
Great summary Mew, thanks for all the efforts you have made on our behalf.
Mew is 100% correct.
People on this forum come and go. I believe most everyone gets as used to this state as humanly possible and accepts it for the time being. I really do not believe for a moment they donât post succesful treatments out of fear of being belittled. Sometimes Mew may seem strict in his posting guidelines, but its extremely important we are taken seriously and we donât give Merck the ammunition to call us a bunch of confused hypocondriacs.
[b]Again, the bigger picture here we should all be focused on -
- Press converage - awarness of ALL the physical and mental side effects of PFS.
- Attention of research community
- Funding - I believe we need to set up a nonprofit for PFS research. Sooner than later. I would personally pledge a 5k drop in that bucket.
[/b]
They changed the label.
Honestly I cant agree with that at all. I cant believe for a second that most people just âaccept the state they are in.â That is total bullshit in my opinion. Now I havent been a poster boy for trying a bunch of treatments but I have tried some, and the idea that people just give up is preposterous to me. I have a much better time believing that they recover and simply never report back⌠Perhaps a lot of them recover in 4-5 months and just stop posting. IDK how many dormant posters there are on this site, but Mew probably knows, and Id imagine it is A LOT. I have always wondered where everyone is on this site, honestly i wouldnt be surprised if theres only 200 or so posters that post at least once a month⌠Thats not every much at allâŚItâs like Dr. Irwig said, we are a very very minute population as it isâŚ
Regardless, Mew I commend you on what youâve done for us and appreciate it very much.
I just canât beleive some of you guys are willing to forgo your right to say what you feel pertains to your own individual situation because one person who happens to be a mod on this forum dissagrees with your opinion.
If one thing keeps me going every day, itâs the fact that there might be a cure somewhere that we can find without placing, well lets face it, our LIVES in some researchers hands that might not even show up and if he did, might be just as confused about the situation as we are. Or even worse just tell us what we already know - that we are messed up. Broken.
And the other thing to consider, and somthing that I find completley baffling is that guys are claiming to recover via natural ânon westernâ methods, yet somehow because itâs not from a reseacher or a mainstream doctor, it is disrgarded or called bullshit.
What am I missing here. I think I know and that is that Mew has very little understanding of how natural medicine, detoxification and nutrition actually works, so he chooses to avoid it at any cost. Also he may not be in part of the world where such knowledge is readily available through doctors like it is in my country.
These are just guesses but saying we are to avoid talking about natural medicine due to the assumed opinion of some reasearcher is just a cop out. Thereâs gotta be more to it.
.
I have pretty much just accepted the state im in. Itâs been almost a year for me, no real changes at all. The only change has been my mental outlook, just accepting this is the way i now am i try to find other things to make me happy in life, rather than dwelling on my problem, and this has made me a happier person despite this post fin bullshit. And i have to accept the state im in because frankly itâs pretty obvious there is nothing that anyone has been able to do fix our situation. By accepting im not saying i dont want to try things and research to find a cure, but im no scientist so apart from eating healthily and trying suggestions which might pop up from time to time on here, thereâs not much else i can do to physically make myself any better.
I just keep some faith that either time, or a breakthrough in the future will bring me back to normal some day, or at least a decent bandaid solution which will bring back most of the normality to our lives, but i have accepted that thereâs a decent possibility this wont happen, and i have to make the most out of the life that i still have. We could be in wheelchairs or dead, at least we still have the ability to do a lot of things which others less fortunate than ourselves cant, and i think that is something that shouldnt be forgotten.
So how many guys from this forum are actually seeing this Prostate specialist in Greece?
Can we convince a few of the more local guys to try it out?
Iâm hoping there are some Europeans who are going to see him⌠What he said cant be ignoredâŚIF I lived in Europe I would⌠hopefully some are taking advantageâŚ
Is there even a single person seeing him?
Easy enough to test out his hypothesis here if your dead set on it. Keep knocking on urologistâs doors until you get one to order the transrectal ultrasound. If you go and they tell you its shruken or undersize for your age then I guess you could rule this out.
Yep, got an appointment setup for late July, by a Uro who was interviewed in one of the CBS new articles⌠He believes pfs exists, so he should be willing to helpâŚ
So is that the same guy or someone else? If itâs someone else who is he?
I specifically want to know who here is currently seeing this guy in Greece and who is planning to go in the near future?
Can we convince some of you guys over in Europe to give the prostatitis doctor a try? I know itâs a lot of time and money but itâs much less than it would be for guys who have to travel there from the other side of the world.
Are there any locals over that way willing to give this guy a try and see weâre onto something?
Go to a urologist and ask for a transrectal ultrasound. If they tell you its shrunken and not inflamed I guess you can rule this out and move on. I donât see why youâd have to fly to Greece for that.