Predisposition May Be A Non-Factor

General Discussion
#1

I don’t think predisposition matters all that much when it comes to side effects. Maybe some people’s bodies are weaker and more susceptible to changes in the body in general, anything’s possible, let’s not rule it out. But let’s say someone who’s been taking finasteride for years without any problems had tried starting with a different method. How do you think that person would’ve fared if instead of taking a dose each day, they took it randomly? Sometimes once a week, once a month… how long do you think it’d be before they get side effects?

I think if you start and stop finasteride enough times you’re going to get side effects no matter what. So this may not be a predisposition thing, but dependent on chance, because playing around with androgen receptors enough times probably always leads to different results.

#2

How I know it’s a predisposing factor is because we have two brothers notna and pvdl, who developed pfs at the same time with the same symptoms

#3

Are theirs completely exact? I haven’t looked into their specific situations but we pretty much all have the same side effects. Every one I have I’ve read about others having. I don’t think it’s as big a factor as theorized.

#4

There’s also been cag repeat lengths correlated with symptoms in a study, and a father and son getting it. But pvdl and notna took it at the same time and got PFS in what they called “lock step”, with identical symptoms.

There’s undoubtedly a predisposition and within that it’s obvious it’s variable as to what’s going to be needed, but I’m as severe as it gets after one 0.25mg dose (had 2 pills six years before). There’s also many instances of people doing strange dosing documented on hair loss forums.

Something I believe our community needs to accept to properly address and consider the problem is how incredibly rare this is. France alone 128000 people took finasteride last year, 30000 of those being prescribed Propecia. m.leparisien.fr/societe/propecia … 379583.php

Many manufacturers manufacture generic versions. Propeciahelp has under 5000 members from across the entire world after a decade.

Merck’s studies are not the only ones on the incidences of adverse events from 5aris. Here is one with a review of nearly 10000 men compared to those who did not take a 5ari, looking at depression and suicidality incidences:
jamanetwork.com/journals/jamain … le/2610105

Here is an analysis of a cohort of 4274 health men prescribed Fin between 2001 and 2013 with a detailed criteria. The total incidence of sexual dysfunction was 6.3%, with 1.1% being persistent pfsfoundation.org/wp-content … m-2015.pdf

The vast use of this drug and tiny cohort of PFS sufferers is a clear pointer to disposition in the genetic level. I believe there’s anecdotal evidence amongst PFS sufferers to conclude going off/on is often a way pfs occurs, but that’s still within our small community of victims who I believe are predisposed. I can’t see how you’re able to conclude otherwise based on any metrics.

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How many people suffer from PFS and do you think there will be a cure soon?
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#5

Thx Axolotl! Great work, I absolute agree with you.
I wonder how people look like re their symptoms.
I have red curly hair and blue eyes (the rarest combination worldwide) like Randy (RIP) and have symptoms in all of the categories. Maybe, I am next to say goodbye if no solution arrives in the next minutes… :open_mouth: :neutral_face:

#6

My reasoning was that if anyone took finasteride enough times by starting and stopping at various times then they would eventually end up with side effects no matter their genetic makeup.

Your data says otherwise it seems so I’m probably wrong but I’m skeptical of those studies that claim how rare PFS is, science isn’t an exact science after all. In any study you could just end up selecting 4,000 lucky people. And some doctor’s who believe in PFS have thrown out numbers like finasteride side effects having a 25% chance of occurring.

I agree it’s unlikely, but there are so many variables to consider that I still wouldn’t rule it out. PropeciaHelp having less than 5,000 members still isn’t that good of an indicator. Plenty of people just read because they have nothing to add. This drug and disease is still in its infancy having only been invented in the 90s, a lot of people still aren’t aware. We’re living in a world where the U.S. President, who has unlimited resources, still doesn’t realize finasteride is the cause of his insomnia. That’s huge when you think about it.

I read posts of new people posting about trying out finasteride on hair forums all the time and I keep seeing those same people post about getting side effects. It happens often.

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#7

i don’t like that lbv is so aggressive but i think he is true with that. i had no problems with finasteride before i took it every month 3 on 1 off ( 3 week on 1 week off). Thats what messed my hormones up and crashed me. I think if every fin user would take fin 3 on 1 off he would develop pfs.

#8

Exactly, I have always said that what is really ba for our bodies is to change the hormone profile, and by taking and then stopping finasteride you are playing too much and your body cannot manage it. That is the reason why just one dose can such an adverse effects.

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#9

I took it once and got fired hair but not pfs…Then went back normal…Then the second time I got pfs…So I would imagine a lot of people who would get have not…Sometimes it takes stopping and starting so I would think I was not susceptible to pfs based on my first experience so that might be the case for a lot of others…If you prone why not the first time?

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#10

There’s definitely genetic disposition: even among PFS sufferers some people get PFS from a couple weeks of fin like me, some only get it after years. Lots of people who posts on here never crash and recover once they come off fin like they are suppose to. It’s definitely genetic.

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#11

I dont think so. I would be the guy you talk about. Quitting without any problem. But i was stupid enough to believe a forum. they told me to take it 3 weeks and every 3 weeks one week break. like a cycle. to reverse tolerance lol. I have done this on/off 3 Months and after that i crashed. So i guess everybody would get PFS when he would take it like that. So it depends on your luck.

#12

I do not think everybdoy who follow that pattern will have PFS, it is a matter of luck. BUT I do agree that “play” with dosis and days is worse because you are unbalancing your hormonal profile. That is why the doctors do recomend to take the poison every day, in order not to create that unbalance. If you do so and play with dosis or days, then you are buying more tickets to get PFS.
I did also play with dosis and days, thincking that the sides will be less agressive. But while I was on uit, I could feel how my body and feelings, suexual desire, etc changed depending on if I took the pill that day or the day before, etc.

Regards.

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#13

There is a genetic predisposition as two twins developed the same pfs symptoms at the same time after withdrawal at the same time (pvdl and his brother).

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#14

The question is if this is really suppossed to be identified and a treatment desired. I doubt. I am very sure it is not toodifficult to find the root on a genetic level. You dont need thousands of patients. Dozenzs with similar symptoms would be sufficient in number. And the control group. If M. says, some symptoms can be permanent, then mutation is very possible. Not in all cases, of course. M.makes money with that fin. Okay. They didnt say the whole truth 20 years ago. Okay. What if people would start not telling the truth or the truth about fin and nobody would ever touch fin? Would that be okay for M.? HM, I doubt.

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#15

I highly doubt our issues are from genetic mutations as finasteride, accutane, SSRI’s etc are not mutagenics, they may be toxic but not mutagenic. Gene expression is most likely, gene expression is like a volume knob, we where at 50%, now the volume has been changed, we need it back to its orginal rate, it’s just a matter of how.

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#16

My biological father has been taking finasteride for prostate issues the past two weeks. So far he’s functioning fine whereas I had side effects the next day. He could get side effects any day now or might never get them. Although he did get mild IBD from accutane so chances are he’ll get messed up from finasteride eventually. And my brother took accutane and didn’t have any problems at all.

Again I think these types of drugs are chance dependent, not predisposition related, studies and “facts” about these drugs aren’t set in stone.

Edit - He now has sleep and memory issues. He can’t sleep past the light sleep phase. lol

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#17

im totally with you on this topic

#18

is pvdl not the one that claims bpa plastics causing pfs? wouldnt believe everything he says so …

#19

I don’t know what to think. I got PSSD after 18 years on and off those pills because I couldn’t stand the side effects. I usually went back to “normal” but after about 15 years of this I noticed PE, low libido, and lack of morning erections. Some of this may have been going on longer and I didn’t really notice. My concerns were dismissed by doctors and after a couple more short bouts with these meds I said no more. I fully “crashed” 4 months after stopping Prozac the last time and now am a complete lobotomized and castrated zombie. I have to think the on/off action hurt me bad.
But my mom was explaining to my cousin that I had a bad reaction to a drug and he said that he had a bad reaction to a drug too-Propecia. He said he had low libido, sexual dysfunction, brain fog, etc. He said he is maybe back to 80%. So I don’t know it could be genetic too. The on/off may just be more likely to change those genes in some while others it takes just 4 pills total. Either way it’s rare. No doctor I’ve met besides Goldstein knows about it.

#20

@jrums01, Have you taken part in our 23&me project? Can you get your cousin to do so as well?