Discussion thread regarding improvement of Propeciahelp.com

General Discussion
#32

I think the homebrewers react so aggressively because the protocols are having limited success and any critique collapses the whole “we will recover/its only a matter of will” construct, as it is obviously built on quick sand. When you question the effectiveness and success rate of homebrew while suggesting a very long term orientated more complicated and unknown solution like scientific research, you take away hope. And since hope for a near term homebrew solution seems to be essential for many, they react viciously. At least thats my take. Its the classic shooting of the messenger phenomenon.

If the protocols would actually work, they wouldnt feel the need to react so aggressively. They would try to convince us or leave it but not be aggressive since they would be progressing along nicely and thats all that matters at the end.

I think the solution would be to let go of this claim, that homebrew has cured or will cure a substantial number of PFS victims. It hasnt happened and wont happen unless we make progress via the foundation. If that solution is to tough of a pill to swallow we could agree to disagree for the time being; let the homebrewers do their thing and we can discuss other issues together in a civilized manner. But the attitude, that homebrew is the solution for all is destructive, since it implies that anyone not recovered is responsible for his condition. In that regard I believe many in the homebrew community will have to make at least a partial concession, just like we are making one by reinviting them to propeciahelp.com.

I have no problem with homebrewing (even though I am not believer), as long as the universality claim, i.e. the claim that it will fix everyone who isnt lazy, is let go off.

#33

Hello everyone, thank you for your feedback and comments… I’ve reviewed this thread and there are many valid points, which is much appreciated.

This forum was started at 2006 as a lifeline for PFS sufferers and it continues to be that to this day, and I’d like it to be for the foreseeable future. I spoke with Awor on the weekend and we had a good discussion about the future of PH.com, including a site revamp and updated forum software. We are still hashing out the details and this will not be an overnight process, as there are many things to be accounted for and sorted out. We ask for your patience on this as it is a very large task, considering the amount of history on this site and data to be migrated and configurations required once we have a finalized plan in place.

On my end, for various reasons I have not been able to put the same amount of time into the site and participate in conversations as I have in the past 11 years, especially compared to when it first started (including moderation). Hopefully, the forum software Awor is considering will allow for more community based moderation options to help spread the workload.

In addition, looking back regarding closing of the Theories section, I can see now that this had a negative impact in driving membership to a more experimental treatment forum, which is completely understandable. Awor and I are reviewing ways to incorporate more experimental treatment areas for the next iteration of the forum, in order to unify both groups for a stronger community overall.

There are many other valid points you have all made which we will assess, and we appreciate your contributions. If you have further input please continue to share it in this thread.

Thanks again for your continued support, as we work towards a brighter future for the site and each other. While things may have slowed down more recently, we are confident that with a proper revamp the community will become stronger than before and make even more of a difference in generating awareness and research interest in our cause.

#34

Thanks Mew, that’s great - can’t tell you how much I appreciate all your ongoing support to PFS sufferers.

#35

Thank you, Mew.

#36

Great discussion, you guys, and thank you sincerely to Mew and Awor for creating and maintaining this space… it truly is a lifeline for so many, as we all know.

I agree that supporting theories and being liberal with the ideas (however strongly one many disagree) is a good thing. Yes, I don’t think that eating a bit of tofu is going to cure this (personally) 6-year-and-counting plight, but if someone wants to make an argument and has put in their time and research, hey - I’ll entertain it. :wink:

And I have long-since thought that a modernized, updated software revamp is long overdue. The only thing I would hope is that nothing is lost in the process. As we all know, sometimes searching through old and new posts is incredibly helpful for so many reasons… It is essential to have this place as a PFS encyclopedia.

Thanks again to Mew, Awor, and all those who contribute.

#37

I think the site is fine even if it hasn’t been updated. It saved me personally a lot of headaches reading about others’ experiences with finasteride. I knew what to expect and that’s a big relief. I didn’t need to have my blood levels checked to know that even if they were normal I would still have lasting side effects.

I do think that some of the attitudes around here to change though. Hair loss isn’t just a cosmetic disease, a lot of people who go bald early when they’re young also get enlarged prostate issues, I’m in my 20’s with an enlarged prostate and every prostate drug out there is an androgen inhibitor. The only safe treatment for it seems to be Cialis, it has its own side effects which puts some people off using it but I’m not aware of it having permanent side effects. But if Cialis doesn’t work for you what are you supposed to do then? When I see posts here of people having kids and saying “We shouldn’t have taken this drug when we already had girlfriends” or that guy who said his kids were healthy when he had them post PFS. It makes me realize the attitude is no better than the pro-fin people who disregard people who have side effects. You’re passing on this disease when you have children that are male. It’s as bad as the parents who let their kids take accutane. Yeah finasteride ruined your life but you keep ruining your children’s lives too. My father doesn’t have hair loss or prostate issues, but my maternal grandfather did and here I am decades later down the family the tree suffering because of their negligence.

#38

Don’t worry, we’ll certainly migrate all of the content (i.e. topics, posts, attachments, pictures, private messages, etc.). There might be a few infos in the user profiles that we can’t move. The whole migration process is fairly complex, that is why it will take us some time to complete this project.

#39

I would suggest that you two (ie mew and awor) get in contact with eden from solvepfs as well. If he can contribute to the new theories section and the overall website he might agree to closing down solvepfs.com.

#40

I am available to have a Skype call with Eden to discuss this. His participation on the future Propeciahelp.com would be more than welcome. Among other things, we need someone to head the whole user developed theories/therapies section (whatever the name for this will be). Neither Mew nor myself will be in a position to take on that role. Maybe someone can help to put us in touch. If you are that person (or if you are Eden), please pm me.

#41

There’s nothing wrong or significantly deficient with phpbb.com. Hundreds if not thousands of high adoption sites still use it. Merely update to the latest stable version, IMO. The site structure is fine. Don’t over think this. You need some actively engaged new moderators. That’s about it.

#42

I wanted to add that I think bringing the theories forum back is the right move.

I agree that it’s dangerous, most people should probably do nothing after getting PFS because they’re most likely going to make their symptoms worse. But I think one way to combat this is to just have a disclaimer stating exactly that. Drugs like progesterone are probably going give you more side effects than you had. Same with using drugs like melatonin and goat weed to improve sleep and ED problems. Melatonin can give you insomnia and goat weed can make you actually blind and giving you hearing loss along with all other PDE4 inhibitors, including Cialis which I mentioned earlier in this topic that I wasn’t aware of it having permanent side effects when it definitely does. But there are some genuine cases where a specific treatment can help make someone’s life more bearable, maybe PDE4 inhibitors can save your penile tissue from being damaged while you wait for it to heal and you’re comfortable taking the risks associated with it, so you can’t just dismiss potential treatments altogether. Solution is put a strong disclaimer at the top and let people make their own decisions.

#43

What I have seen so far as possible solutions is(after having read hundreds of posts):

Methylprednisolone for recovering erection (possible)
Cortef for sleep, mood, Energie
Antifungals helping recovering lots of symptoms

By the way, I have found studies from 1985 re 3Alpha-d-G reduction in “men” = pseudohermaphrodite

I am quite sure, M. knew that studies…

#44

My biggest complaint with this site and the PFS Foundation is the secrecy involved behind the scenes in trying to figure out what is going on with our bodies and how to fix us. After over ten years with PFS I still have very little idea what the leading theories on the causes of our illness are. The Italian study seemed to provide the most insight with changes in neurosteroid levels and pudental nerve damage. Yes we need hard scientific data but it only helps if the cure comes in my lifetime.

The studies do not provide theories on why/what mechanism caused the neurosteroid levels to change or how to correct them or how to correct pudental nerve damage. It is probably beyond the scope of this site and maybe even the foundation, but in a perfect world we should like to see a world class expert hired to review all of the studies and give an opinion on root cause and possible path to fix said root causes.

We are all impatient we the slow progress on the scientific front. To get research done, papers written, peer reviewed, and published takes years, and we are just now scratching the surface. It’s like trying to cure cancer on a shoestring budget. The Italians seem to be the only ones making any headway for us. I’m glad the foundation is focusing funding on them now. I think the research and its objectives should be more open so that can all understand what theories are being investigated, what the roadmap to finding a cure is. If people knew more of what was going on they would be more motivated to donate,

We have all tried to make the best of our lives with pfs which is why this site has fallen into disuse. People have had to accept that life moves on with or without a cure. If the foundation or an independent expert were to make recommendations on things to try to cure us people would be lining up around the block to try it. People have been experimenting for years with everything under the stars to cure themselves based on little more than Google searches and charletans like CDnuts for advice.

Yes we need hard science but we also need to be informed. Awor used to speculate on what he thought was the cause of our problems, he no longer does that which is ok. But how about if he or someone else we hire examine the studies and break the data down to a level a non medical person like myself can understand. To this day I have seen very little discussion on this site about the Italian study or what our next steps will or should be.

#45

What frustrates me most is they almost never mention the physical effects…I did not even get sexual sides but devastating physical changes and fluid retention…Can’t live life normally now the physical and cosmetic damage is unreal I look like a different man now than before I took and stopped the drug…All they focus on is mental and sexual but imo the physical is the worst and the most life altering…IE…50lbs or more of weight gain, hair brittle dry and destroyed, dry skin, greying of facial, scalp and body hair and unreal fatigue with no capacity for exercise…Long distance runner who now can’t even run 1 mile with out stopping…Some of this occurs while taking the med such as the greying of facial and chest hair…Scalp hair also greys and drys…Then after stopping huge physical changes begin and they capacity to run ie exercise begins deminishing every week…

I am having problems with physical function and huge mobility issues…Just getting in and out of a car carrying all this water around your waist is such a handi cap and strain on the back and body…And this is some one who was a runner and would drive an hour or more one way to work at a construction site for 10hrs 4 or 5 days a week…No problems…now all I can do to get through the day like this doing next to nothing…

#46

holyhead I feel you. I have the same physical effects since 2010.

#47

I am pushing for the foundation to acknowledge bone loss in the jaw, chin and cheekbones. I also hope that they will acknowledge facial collagen loss (i.e. irreversible facial fat loss) which absurdly enough can go hand in hand with a fat increase in the midsection (i.e. you look gaunt despite gaining weight!). They have acknowledged weight gain, dry and thinning skin as well as chronic fatique on their website though:

pfsfoundation.org/post-finas … -symptoms/

Under Metabolism it lists increased fat deposition and obesity.

Under Skin it also acknowledges decreased oil and sebum production.

They also acknowledge chronic fatique.

So at least as far as your symptoms are concerned the foundation is aware of them. What the studies creators/ scientists know of I dont know but I guess they are aware of the symptom list linked to above (i.e. PFS foundations symptom list).

#48

You are barking up the wrong tree. The challenge at hand is to get the medical community to recognize the full symptom profile of PFS. The only way we are going to achieve this is by putting the facts out for everyone to see, in a structured way. I see this as a strategic priority for this community.

Our current challenge is that the full PFS symptom profile is buried in 100K+ posts on this site. I want to add a feature to our future platform that will allow us “patients” to characterize what we are dealing with in a structured way. By structured I mean database based, so we can the publish a statistical symptom profile of our over 5K members of this site. My hope further is, that even the SolvePFS guys will come back to at least fill out their profile (we need this data in one place, otherwise it’s not very powerful). Unfortunately, there is no off the shelf solution that will satisfy this requirement, at least not that I am aware of.

In the past 1 or so months I finally had some time to work on the relaunch of propeciahelp.com. I have an approach and some code to solve the characterization requirement. But I can’t do it all on my own. The core of the new platform is based on Rails (RoR). If you are a Rails developer and would like to give me a hand, I would VERY much appreciate your help. If you would like to join the effort, please pm me.

#49

Thanks for your efforts awor. I think those two efforts do not exclude each other. If the foundation receives enough reports on a symptom, i.e. confirmations by PFS-sufferers that they have experienced it, they will add the missing symptom to their list. A few symptoms are still missing on the foundations official list; it names almost all of them already though.

The ones that are missing are:

  1. facial collagen loss.
  2. bone loss in the jaw, cheekbones and chin.
  3. Altered hair texture.
  4. Shrinking of the adams apple
  5. slower beard growth.

Maybe more, but those are the ones I can think off at the top of my head.

#50

I would strongly advise the new forum to inspire itself in existing successfull solutions such as forums.phoenixrising.me

I will further elaborate on this small post but for a start, id just say we desperatly need rules in this forum and the very first one must be 1) No hate speech. Anyone breaching this rule can be banned.

This will also indirectly solve the problem of people dividing the community and instigating against ongoing research being done for the benefit of us all, since the people breaching 1) are also the most likely to have this sort of behaviour.

There is way too much abusive violent and divisive behaviour in these forums.

#51

I think that we do have enough platforms (ph, solvepfs…)
By creating a new platform you are forcing the community to divide.
Instead of that, a list of possible treatments so far, collected from lots of posts, would be more helpful.
Here is such a list ( supplements not mentioned):

People who are aggressively pronouncing how fast and well they are recovering and writing hundreds of lines every week, are not credible and should be banned. Those stories are fake. I guess what the reason is why they are acting like that. Just use your brain.

Several sleep drugs
L-Tryptophan, 5htp
Antifungals / Methylprednisolone
Cortef
GHB /Dhea
amphotericinB
Fluconazole
letrozole
Fexofenadin
Melatonan
dexamethasone
BCP-157
Galantamine