How many people got pfs after stopping and starting Propecia

General Discussion
#1

I ask because I feel like, in order for us to bring more attention to our cause, it may be necessary (though incredibly cruel) to bring about the condition under laboratory conditions. It seems like a lot of us went on and off the drug numerous times before our crash.

How many times had you been on and off Propecia (let’s say, in line with the usual half-life, stopped for 14 days or more) before you crashed? I know not everyone experienced side effects straight away, but seems like those who experienced it earlier had a number of goes with the drug?

Happy to be proven wrong. I myself went on and off the drug three times due to side effects before crashing.

#2

i started and didn’t miss more than a random day here and there for fifteen months. starting getting sides. quit. sides were put on steroids.

#3

i came off fin a handful of times for around a month or more in the four years I was taking it,noticing my hair shedding again always made me go back on it,each time I came off it I suffered no side effects,i actually crashed hard while on the drug…

#4

That was exactly my experience. Had mental side effects while on the drug, but once I got off the side effects got much worse, and new side effects emerged.

#5

My theory would be that the rush of neurosteroids (or whatever method) back (or out) into the brain is what does the damage. This would explain the recovery of some people and subsequent crash. It would also explain why side effects got much worse upon quitting and having a period of recovery.

It would also explain why some people get it after a few pills, and others get it after a number of years on the drug. There’s no reason that anyone would encounter an almost complete cessation of 5ar activity otherwise. Maybe, like diabetes type 2 patients with insulin receptors, the sudden spurts of activity are the culprit rather than the drug itself. My understanding of that mechanism is the receptors are persistently altered by the abrupt change in activity.

I’m not sure what receptor is causing this (better left to the scientists) but this theory seems to fit.

#6

Yeah…I should mentioned that when I came off Propecia I did a 3 month ween…and my recovery (which was 100% complete) lasted almost 2 months, but I still crashed, and crashed hard.

#7

i didn’t really have a recovery period like a lot of people talk about around here. again, it was just a straight fifteen months, sexual dysfunction started, stopped the pills, everything else immediately started. it may have gotten worse over time, but there was no said recovery. i think you might be on the right track but i think everyones different. i only started the pills once and quit once.

#8

I think your case is in the minority - one of the hallmarks of PFS seems to be the recovery/crash combo. I agree though, I think its not the drug itself that damages the body, but the burst of hormones upon quitting. Hopefully we can find out soon.

#9

I had previously been on and off Fin twice before with no issues when discontinuing - although they were very short time frames on. My PFS symptoms emerged while restarting the drug for a third time, after about 5-6 weeks of use at 0.5mg.

I had no recovery at all after the last period. I crashed while on it, which caused me to stop. More symptoms developed after cessation.

I personally do not think that a surge of returning hormones/metabolites is the major tipping point for the development of PFS; It wasn’t my experience, neither was it the experience of many others on this forum.

#10

It also explains why so many of these targeted treatment methods don’t work - they just cause further flows back and forth of the particular neurosteroids. This exacerbates the changes which have already arised. it makes sense that time, and a steady flow of the relevant neurosteroid through the receptor, would be the best treatment as it would lead to no further damage.

This idea is further bolstered by finasteride’s all or nothing application - it drops dht substantially even at low dosages. This characteristic of the drug would explain why the changes hit so hard.

Even if some of you didn’t recover, the increase in symptoms a period after cessation supports my theory. The sudden surge in different neurosteroids as they come back online can have very different effects. As your body was slowly getting back online the surge caused a crash and persistent damage.

It is also possible that a number of the receptors are effected in this way. If thy all come back online at different rates, this could lead to different crash/recovery combos.

With theI talian studies saying neurosteroids were reduced, it seems logical that we aren’t all suffering from down and upregulation in the same chemical receptors.

We also must remember that not everyone who gets sides develops pfs. Perhaps pfs is a separate issue altogether from the regular on drug sides, caused by this secondary mechanism.

This would make sense given the sides developed only after cessation, with none while the drug was being taken.

Of course, this is all useless speculation, but I think it seems to fit the model pretty well.

#11

Wow…that’s crazy. You might want to contact the PFS Foundation because they mention in the description of PFS a brief recovery followed by a crash. Most guys I’ve talked have had the crash…but maybe most guys don’t have a crash. I think you should make the Foundation aware of this so they can guide research in the proper direction…

#12

Sarcasm? Either way, given the rarity of this condition this forum is necessarily the centre of all information regarding the symptoms of this illness - it therefore makes sense to chuck around how some of the symptoms fit together. Perhaps some interested scientists might check this out when brainstorming hypotheses.

It’s hard because everybody reports different things, but seems like “an increase in symptoms when coming off the drug” is pretty universal.

#13

I have confidence in the Foundation and their research initiatives. I’m sure they will cover all relevant possibilities. Hence I will continue to support their efforts.