What advice would you give to people who are considering quitting Finasteride?

General Discussion
#1

I have people reach out to me multiple times a week on Reddit because of a post I made about PFS. Recently I had someone ask me about quitting because they’ve noticed some mild sides creeping in while on the drug.

I’m always conflicted by that question because for me, I got much worse when I quit Finasteride. I always say that my biggest life regret is starting the medication and that my second biggest life regret is quitting it. Obviously I have no crystal ball though, so I never know how to answer someone with that question.

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#2

To quit gradually by reducing the doses week after week, quitting cold turkey was like nuking my own body.

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#3

There’s little advice to give because there’s really little evidence for how any of this works.

The less someone takes finasteride the less chance there is they will develop PFS is the logical approach.
If there is a genetic predisposition involved of any kind then it’s possible that the people who have never had any issues taking finasteride would also not have issues quitting it.

I agree that tapering off would probably be a wiser thing to do than quitting cold turkey but because of the potency of the drug this is very hard to do and there have been cases where people tapered off and still got PFS.

Then there’s also the reports that some people get much worse when quitting the drug and then restarting it… if a person would more or less create that situation by taking the drug on-and-off as a means of ‘weaning off’ then they might actually be putting themselves in more danger.

I don’t know, some people (like myself) developed symptoms while still taking finasteride daily. I really don’t know whether quitting the drug or not would have changed anything.

Long story short, there’s so much diversity in patient stories and disease onset. Combined with the lack of scientific evidence for a clear etiology, it’s pretty much impossible to give any sound advice.

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#4

Ya this is very true. Since making that post on Reddit, I feel like I’m one of the first things that comes up when people are searching about PFS, so I’m always asked for advice and it’s a sad feeling not having anything for them. I just send them here and try to be positive.

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#5

I too was 100% fine while on Fin for 20 or more years

My troubles started 3 weeks after quitting.

I truly feel that had I not quit, that I’d still be fine.

I guess there’s no way of knowing what will happen after quitting, but if a person’s sides are mild and “creeping in”, maybe the sides aren’t even related to fin?

Based on my experience and yours, I’d be very hesitant about quitting, but having said that, then he’s probably stuck taking it for life.

A lot of unknowns.

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#6

I would say whatever method used, tapering or cold turkey, do it under close medical observation. Get a complete physical and bloodwork prior. Take measurements all over your body. Take detailed pictures. Have a doctor observe the condition of your skin, eyes, collagen, hands, feet, dick, balls, body hair, pubic hair. Gums, teeth, nose, jaw, cheeks, chin, forehead. Earwax production, sebum, eyebrows, size of fingers, toes, wrists, and ankles. Note thickness of hand and foot padding. Make them smell your pits and your feet. Note vein prominence, wrinkles and age spots or lack thereof everywhere. Get a full body CT scan or MRI if possible. Everything that goes haywire in PFS have a doctor note the condition of beforehand. Have multiple doctors note it. Go to an endocrinologist and a urologist. Go to an ophthalmologist, a dentist, and a dermatologist. Tell all of them what you’re about to do. Explain the known symptoms of PFS and that you want a recorded baseline to compare with any changes.

And for fuck’s sake don’t restart under any circumstance.

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#7

Don’t ! The only worse thing than starting this poison was stopping it. While I was on it (10 years) I could kind of function sexually (though I didn’t realize at the time how diminished I was). Viagra worked. Soon after stopping libido went from 30% normal to essentially ZERO. Viagra and the others do nothing now.

#8

I think that that is something that is not spoken of much on this forum, the fact that men may present with fewer symptoms if they continue to take finasteride, against the very real risk of far more life changing symptoms occuring if stopping. When I experienced further side effects on stopping I kind of wished that the forum had warned of these risks rather than the less nuanced anti-finasteride get off it asap approach. We are all on the same page that this is a horrendous drug and that the real risks aren’t conveyed to any prospective patient. These risks include whilst on the drug and further on stopping. At the time I called it a kind of double jeopardy that very few were aware of. Although now I would call it triple jeopardy as there are further risks attached to stopping and starting, which I also unwittingly did. I am painfully aware that if I had chosen to continue finasteride in order to prevent the development of further side effects I would also be aware that I was actively taking a poison which may be harming me in unknown other ways, and that on stopping, or not taking it continuously, these further side effects may very well be waiting in the wings.

As well as updating the prescribing leaflet to include the many symptoms not listed, and also to truly convey the severity of some of the side effects already on it, true consent to risk should also include advising that the patient should take the drug without any gaps to reduce risk of side effects, and that stopping the drug also has additional risks attached.

What a fucking drug.

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#9

you said what I want to say，there are so many unknown risk，crafty.

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#10

Good point and that is why we are stuck between a rock and a hard place when advice about quitting is requested here.

With the many post drug patients who say they took finasteride or antidepressants with either no noticeable side effects, or only mild side effects, only to go on to crash horribly within weeks of stopping; it makes one wonder if the better answer is to keep taking the drug. It seems it obviously would have been in your case.

The problem is that all drug classes here have been shown to have effects that can be easily interpreted as detrimental to health over time. (e.g.: rodent studies showing fin decreases neurosteroids regardless of PFS and negatively impacts sexual organs and function, and studies showing SSRIs reduce hormone levels and may exacerbate atherosclerosis.)

Should a person risk potential health problems by staying on the drug to avoid an unknown, but presumably small, chance of developing PFS? Will they be unable to have access to the drug at some point for some reason? (At least one story of a member here crashing from fin while traveling and unable to fill his prescription.) Others began developing symptoms, apparently out-of-the-blue, years into treatment. If they stopped sooner, would they still have developed PFS? Who knows.

There’s also no evidence suggesting less time on the drug = less chance of getting PFS.
Or that the odds increase as time goes on…

Only sure bet is to not take one of these drugs in the first place, but I personally would err on the side of stopping one way or another, given the choice. Because everything points to a much greater chance of a person not developing PFS if/when they quit.

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#11

It truly is hard to say one way or the other. I think you both raise really good points. I too wish I had just had both perspectives revealed to me. I may have still opted to get off the medication, but it’s hard to say.

#12

So I was poking around the reddit community and saw a few threads where folks were urging fin users to stop. To reiterate my earlier post in this thread, given the chance I think we should be strongly encouraging people to get baseline physicals from doctors prior to quitting and keep them in the loop. That could be the key to recognition while we’re waiting for research to pan out. If they tell doctors what symptoms to expect in advance…vein prominence, lizard skin, facial changes, genital deformation…and they actually see it in relation to fin stoppage I really think that would resonate.

#13

It’s a good idea if they are set on stopping, but also you have to keep in mind that many people’s labs don’t change from the condition. As the recent paper showed, it seems to be more of a receptor-level issue. If they could get some sort of assay of that, it would be great, but I don’t know how feasible that is. I certainly couldn’t get that in my country.

#14

That’s why I’m saying have the docs pay particular attention to areas where visible symptoms present since blood levels don’t tell the story.

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