Success/failure metric for different treatment options

#1

Propeciahelp members, both new and old are more often than not crying out in desperation for anything they could try to take to improve their symptoms.

While the oft-cited standard response reads something along the lines of ‘xxx had crashed/been made worse by taking that substance’ is judicious, it does not ameliorate the drive the person has to do something to make themselves better.

This forum generally excels at providing caution, and while it appears to be an ethical approach upon first-order examination, I’m starting to feel that it rarely convinces the said individual to simply wait for an indefinite amount of time for a possible cure or treatment to be found. Thus it’s often ineffective at dissuading the person from simply reading a thread with no scientific understanding of any theory behind PFS and the risk factors, and deciding instead to take a substance an abundant and impassioned poster vouches for.

Often they take a substance which makes them worse, in spite of prior warnings by the admins and other well-informed members.

I am not here to preach, however I feel the forum could do a better job of providing members a ‘best practice’ guide to the track record of various substances, untainted by subjective and anecdotal biases. The survey has allowed this data to get meaningfully recorded. In addition we have reels upon reels of previous posts over the past decade which document people’s experiences with various substances.

I know the forum admins did at one point mention that this was ‘in the works’, and there was an effort to attempt to categorise different forms of PFS based on symptoms, whether a crash occurred and reactions to various substances, I feel this is a pressing priority as I see quite a number of forum members willing to dabble with substances of a very risky nature.

I am aware that many substances do fit this category, especially amongst sufferers with severe symptoms, but even still, as a forum who’s mission and purpose is to aid sufferers, we need to provide the hard numbers to users.

For instance, recently I have noticed a bit of discussion swirling around about Bupropion (Wellbutrin). Many are strongly attempting to dissuade members from trying out the drug whilst instead pushing them towards riskier hormonal interventions such as TRT and Clomid. They cite a few examples of people who got worse on Bupropion while overlooking the abundance of accounts of it dramatically improving sufferers like few other treatments. If one investigates the abundance of accounts of it improving patients compared to making patients significantly worse it seems to easily outperform any form of hormonal treatment or essentially any other substance people have taken, perhaps with the exception of Tribulus (which still appears to have a higher number of people who have reported deterioration).

I feel this is long overdue and has the potential to save lives.
I think there is near universal consensus amongst the admins that a bespoke genetic treatment/cure for PFS is several years away at the very best, in light of the glacial pace at which the research is moving to even uncover the fundamental mechanisms behind our condition. Not to mention that it’s likely that the treatment will have it’s own set of risks given the diversity of PFS affected sites and levels of severity, and the potential for genetic treatments to inflict off-target ‘collateral damage’.

I suppose its a case of ‘picking our poison’. At least we should be able to do so in a clear and informed manner.

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#2

To be fair, I think using wellbutrin over TRT is a far better option.
If you see a lot of recoveries, the first sides to get better are the mental sides, and I think this is because if you have a heavy neurotransmiter malfunction you are really not likely to give your adrenal function a rest along with the perception you have around the world with that such said imbalance.
I can state for a fact that, dopamine is SO fucking related with androgens and actual sexual function than, let’s say, serotonin - to be honest, in most cases of depression, I really doubt serotonin is the main culprit to begin with.

Wellbutrin, for what I’ve seen, and other dopamine agonists like mucuna pruriens, have the ability to actually make your more “active” in problems solving and subside a lot of mental symptoms that are directly with a dopaminergic imbalance like ADHD, Anhedonia and Memory. If you even wanna go a step further, it’s well noted that prolactin actually causes anorgasmia and erectyle disfunction along males who have high prolacting adopting femenine traits, what is prolactin known to be? A dopaminergic antagonist. I could go for a bigger rant on how cortisol and a dopamine insufficiency is the underlying cause of a lot of PFS and a LOT of other mental issues not even regarding this pathology, but on the psychiatric field.

Talking more on the treatment options thing, I kinda see most mods in here adopting a purely scientific or academic approach to PFS instead of actually seeing what actually works on the battleground - which would be this forum, swolesource, hacktasis and others. I really can’t understand how a lot of intelligent people on this forum put all their cards on waiting for “studies” or an antidepressant that tackles neurosteroids to come into the market. It’s like having a fire caused by a pyromaniac and wait for the pyromaniacs to actually become firefighters and undo their fuckup.
Having said this, I still think on the first months “coping” instead of trying a lot of psychiatric, endocrinological and supplemental options is better so you see how you actually evolve - but literally being afraid of eating an avocado because it “might be” a 5 alpha reductase inhibitor, not really trying any herbs or supplements and just waiting for one day while you are making your morning coffee to see how on the news it has appeared a “cure” for PFS seems really far fetched.
I trully think PFS, PSSD and PAS are horrible fucking conditions, but this goes far beyond three meds-It’s the fact that pharmaceutical industries have a lot of patients under constant medication that professionals don’t know the full mechanisms of under long, and sometimes indefinite, amounts of time by just using the scape goat of saying they are chronic conditions which, under their analytic eyes, they’re incurable. This is mostly seen under the psychiatric sector more than anything.

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#3

What do you mean by tribulus causing deterioration???

#4

There are a number of instances where sufferers who took tribulus worsened their condition.

#5

Oh I see, I used tribulus and got benefits the first cycle but did nothing for me the last 2 cycles. It’s very hit or miss especially when some have say they have been “cured”. People also need to be carful because certain brands are using saw palmetto in the ingredients as well.

#6

Hey @orthogs,

I agree that a catalogue of easy to read experiences with substances would be helpful.

The problem is one of manpower. If you (or anyone else) has the inclination to record the experiences people have had with particular substances and then present them as an easily digestible reference, more power to you.

It should be easy to search the forum, record and reference the reactions that people have had and then post it in it’s own topic which can be added to later on. It will take time but if 2/3 people want to contribute then the workload should be shared well enough. If you’re prepared to take the work on, I’m sure everyone would be happy to see the results.

Feel free (please do) message me if you plan on doing this and we’ll discuss how to get the most out of this. Thanks!

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#7

Is there a way the data from the surveys could be made available?

#8

I think so, I don’t know which data you want though?

#9

I’ve just spoken to Axolotl about this, it seems I’ve not kept up with the news.

A second survey is on the way, and it is this which will provide the data you’re looking for.

Hang tight!

You can see what @axolotl said here:

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#10

As I was reading this post, I thought that finally you understood that the fact that someone claims to be recovered with one drug doesn’t make it the cure for all patients, but you have used againt this post to encourage people to try wellbutrin again.

You have recommended several times the antidepressant wellbutrin without offering any basis for it to help. It feels as if you want people to experiment with it before you start using it. If you want to know if Wellbutrin helps, then go to the doctor ask for a prescription and start using it. Then come back to the forum and tell us your experience. But it makes no sense to recommend everyone wellbutrin when you haven’t even tried it.

I am very interested in knowing who is this person/people who is dissuading people from taking wellbutrin while pushing people towards TRT or Clomid. Do you have any quote of this person? Both TRT and Wellbutrin have caused big problems in some PFS sufferers, so I am interested in knowing who is this guy recommending TRT or Clomid and at the same time tellling people to not try wellbutrin.

I strongly agree that we need to measure and compare how people react to drugs, and I am sure this is something that will be done sooner than later, but at the same time I strongly disagree with the last part of your message, showing a big enthusiasm for a drug you haven’t even tried. This kind of behaviour reminds me a lot of old users, some of which were obsessed with TRT being the cure, Tribulus being the cure, a trip to a Greek urologist being the cure or Candida being the root cause of all our problems. One thing was common in all of them: the more some people told them that the drug their recommended wasn’t working in their case, the more they insisted on it.

#11

I never claimed anything to the contrary.

The basis is the numerous accounts of it dramatically turning around PFS sufferers lives for the better.

I have not exhibited any ‘big enthusiasm’ for any one particular drug/treatment, but was merely shining light on the biases people tend to have based on their personal bad experience or their revulsion towards ‘big pharma’.

I was merely pointing out that all options should be examined on an even playing field, taking into account prior experience. This should be done in an entirely objective fashion.