New here, also would be great to get some help and have some info that may help you understand more

Member Stories
#1

Long story short. 10 years of Propecia (1mg) then wanted to quit because of side effects (warm feeling, feeling fear and nerves, Depressed thoughts). Also good to know is that I had this over a very long period from time to time but we (doctor and I) just did not link it to Propecia.

About 10 days ago quit after thoughts became overwhelming (something broke in me). Could not reach doctor to ask how to quit so just quit. 2 days after that moment felt better and better. Next day I became overwhelmed with the opposite (colors were brighter, euphoria etc etc). Like an overdoses of something, hyperactive, and something broke in me again (was rdy to jump off a cliff). Also my penis was like rubber.

Thought that was the end (that was Sunday, 2 days ago).

Monday I first went to the doctor (that is yesterday), but I surprisingly had a great day (all things that first failed worked again) and got better as the day went by.

So my though was, I had the crash but I recovered, Also this morning again felt great, but then again that overdoses feeling kicked in ā€¦ (after going back and fort with my doctor about what happend) we decided to start again but with 25% of 1 Propecia pill (after being off it for 5 days) to take the edge of the "overdoses"of waves of hormones I am getting because I quit Propecia.
The strategy is now to keep doing that wile I see some specialists in hormones (endocrinology) to see how to ā€œlandā€ safely.

Not sure that helps. But I do believe that the wave of hormones quieting Propecia is maybe as dangerous as the pill itself. But I quit after 5 days so also have to find out if that still works now to gradualy go down on dosis ā€¦

From this I also have the questions did anyone with PFS ever start again with 1 mg or less Propecia to start things up again to later again land safely ?

The below text comes from this post https://www.hairlosstalk.com/interact/threads/do-not-stop-finasteride-cold-turkey-a-strong-argument-to-taper-to-very-low-doses.88299/

ā€œLogically speaking there are basically two broad possibilities for what causes this syndrome:

(1) Something the drug does to you while you are on it (affects neurosteroids, the androgen receptor, etc, etc, hypotheses abound)

(2) Something that happens upon stopping it

(or perhaps a combination of (1) and (2))

The reason why (2) seems to be plausible is the time line of events that most men report -

- experiencing side effects while on the drug

- a resolution of side effects a few days after stopping

- followed by a ā€˜crashā€™ a few days or weeks after this

- the symptoms following this ā€˜crashā€™ are variable in severity and variable in how long it takes to resolve. They also seem to be worse than the side effects experienced on the drug AND they seem to have a different hormonal signature (ie in post-finasteride syndrome men seem to have a hypogonadotrophic hypogonadism, while men on the drug have low DHT (of course) and a slightly higher than normal testosterone and basically normal LH and FSH)

This time line of symptoms seems to fit the shutdown of the axis cause by a surge in returning hormones.

I think (1) is important because it probably increases the sensitivity of the system to DHT and other hormones, thus creating a perfect storm - a rapid and large increase in hormone affecting an already overly sensitive system; making it more likely to be shut down."

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#2

Tappering is your best method to mitigate side-effects, people on SSRIā€™s who go off them cold turkey get the same side effects it must be tappered and is almost impossible on finasteride as it has a flat dose response. Iā€™d highly recommend that you buy a microgram scale, break up the pill and measure it out to 0.01% of finasteride and taper or get this done in a compounding pharmacy. You taking 0.25mg is the same as taking the whole pill, taper for the next month and then go off the drug.

#3

hey OP, welcome.

thanks for the intro. as for your question, i donā€™t know the best answer, maybe someone else can also input.

i request that you fill out the survey we have. itā€™s a part of the community project to help us advance towards a cure for this problem we are dealing with.

#4

Hi Papasmurf,

Thank you for your input. I will do that.

But, do you not believe I may be too late with the tampering off ? As I already quit 5 days, had a crash, recored from that a bit and again started taking 25% ?

#5

Hi Lakehouse, Sorry at this moment I am in 100% concentrated on what is going on, when I have time and things calm down a bit I will do that ā€¦

#6

So you crashed and went back on it again, did it help with your sides? If you have recovered then Iā€™d say youā€™re in a good position but only time will tell. Try not to think about it do as I said and stay off this forum stress wonā€™t help your system. All the best

#7

Thanks again, yes after that crash day (Sunday) i recovered (Monday en Tuesday morning was all good) but then later that day (Tuesday) again I was hyper, felt like building up to the next crash so took 25% (after 5 days of quieting) and crash did not really happen.

I have not so many sides at the moment, but I am again on propecia (on 25% yesterday and about 15% today) ā€¦ so that is not something I am happy about.

Thought perhaps after the first crash and recovery maybe I should have not taken the 25% again to prevent the next crash (felt a build up like when first crash happened). Scared I fucked-up a bit by doing that (it was in consensus with my doctor, but they are also just guessing).

Now asked my doctor to make microdosis as you mentioned and so I can quit over 3 months or so.

Please your thought on the above.

FYI looking back on couple years I had this sides before and even a crash when I quit about 2 months and had a crash (year back). We at that moment thought it was something totally different. Coincidental (not related to me knowing I had the crash, guz we did not make a link with propecia) then also I started propecia again 1 day after (I will spare you the why).

Actually this forum does not give me stress. I understand that I am not necessary the worst case scenario. Believe it is actually already very helpful and already am thankful for the info.

#8

If you had a crash trust me youā€™d know it and would soon find out the main culprit. The crash I had was unimaginable, I thought I was going to die, my heart was racing so fast for for 2 weeks straight I thought it would explode. All Iā€™m saying is the crash I had is nothing compared to what others describe here, mine almost killed me and that isnā€™t even an exaggeration and I know itā€™s done huge damage to to my brain and CNS. Tapering is fundamental in medication, I believe if someone is set on taking finasteride it should be tapered on and tapered off to mitigate sides but finasteride is complex in that it is next to impossible to taper, itā€™s just the way the medication was designed and a poor design at that, I think thatā€™s itā€™s major flaw. Iā€™m not saying tapering will work but it has been discussed before and if I could reverse time Iā€™d do it in a heart beat. Try to get it down to 0.01% and even lower if you can ans I pray for that youā€™re not still here in a few months and can move on with your life.

Best of luck pal

#9

After quieting 2 months last year I had to go with ambulance to a hospital (heart racing, thought I had a heart attack). Stupid, but nobody saw a links between that and propeciaā€¦

So after that I started again, unfortunately ā€¦ Last Sunday was not like that, just broke down all systems and I got extremely flat (wanted to jump off a cliff) after 2 days of feeling euphoria and ā€œoverdosesā€.

#10

A lot of people says they feel like theyā€™re about to die in their crash, i had a complete autonomic shutdown, my organs didnā€™t work, i slept 30 minutes in one day after being awake for 40 hours, i couldnā€™t operate a fucking juicer, i had to manually take a piss by showering my bladder to let off the urine, i mean. Stop with the comparisons.

#11

Yeah I also had to call an ambulance after I collapsed itā€™s so scary to think about the suffering I went through over those months. Stick to the tapering

#12

In hindsight are you suffering with any nerve disorders? If not you canā€™t compare yourself to my circumstances. Iā€™m in severe agony from nerve pain, if you have ever had nerve pain in a tooth imagine it 10 fold all over your hands, arms, legs and feet thatā€™s what Iā€™m dealing with right now. Iā€™m on lyrica, co-codamol and they donā€™t even mildly work so yes I would absolutely say that Iā€™m probably the worst condition on this forum. If your organs werenā€™t working youā€™d be dead.

#14

Itā€™s obviously not a permanent, or to itā€™s full extinct shutdown. But yes, tooth pain, nerve pain, completely body disconnection, rubber dick, full impotence with 0% erections and all that good shit, woke up with a numb head, hands and feet, not to mention i couldnā€™t feel my skin because it was completely desensitized, i can keep listing my sides and we can go on until the day we die, but whatā€™s the point? Iā€™m much better now, but still not complete, but i thank the fuck out of god everyday for being able to function.

Go to swolesourc and check out pageidolā€™s post about CNS shutdown, thatā€™s what i had, many has had this, and we can say, wow, weā€™re the worst cases. I find people hyping themselves up by writing down the extremely unique and rare side-effects they have, none of them are, and none of them are permanent, obviously we donā€™t understand the mechanism of the drug and how it has affected us, but i can say that Iā€™ve experienced beyond metaphysical experiences that Iā€™d never thought was imaginable, and have recovered moderately, but not fully.

Iā€™ve mentioned previously in my posts that what we seem to experience, in less, or fuller extinct is a CNS shock, but fuck knows.

#15

These symptoms you and other guys mention, they all kicked in together or they gradually showed up? What about the sexual side efects?

#16

It happened to me during my first crash, started off with something that felt like a cardiac arrest, heart was pounding, anxiety, slowly body was tapering off, felt something fucked up inside my body dying, or being completely removed, a surge of some kind, followed by numbness in my prostate & anus, took a few months to resume back to normal activity, but iā€™m proud to say i can take a shit daily, i can eat properly and taste my food to nearly itā€™s full extinct, and i can pee properly now. So, whoever had this, donā€™t be scared.

Pageidol got it by taking some sort of gelatine collagen supplement, he was on his way recovering from fin, but apparently had some skin issues? I donā€™t remember all the details

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#17

Hmmm, I seeā€¦

The symptom that bothers me the most os Ed and It started off with delayed ejaculation like 3 years beforeā€¦

#18

I cried every day for hours straight with the pain, I can tell you right now most people would have thrown themselves in front of a bus to put themselves out of the pain- to give you an idea of how bad it was I couldnā€™t even rub my dogs belly because of the heat intolerance, if someone told me that Iā€™d say they were probably nuts or over exaggerating but I damn well wasnā€™t, it was the equivalent of a blow torch being on me every waking minute so I really havenā€™t seen anyone talk about the pain to that extent on here but youā€™re right weā€™re not here to measure dicks as such. I shouldnā€™t really say this but It got that bad that I picked up a kitchen knife and tried to stab myself with it to put myself out of the pain, itā€™s truly unbelievable what Iā€™ve been through because of a small dose of Finasteride and my family having to bare the brunt of seeing their son go through that. I also showed up at my neurologists office, as I was on a 3 month waiting list to see him, I was on my two knees begging for help crying uncontrollably on the floor just imagine how degrading that is but when youā€™re in that state you just want help and put out of your misery. Itā€™s apparently from DHT shutdown, the CNS and glial cells need it to function. Do you have buzzing sounds it your ears?

#19

Yeah i know, i donā€™t want to think back to my first few weeks, they were really inhumane. By the way, you really, really shouldnā€™t take Lyricaā€¦ Regardless, i do have a 24/7 static noise, or white noise, iā€™m not sure where to put it. But it gets filtered when iā€™m outside. Itā€™s 90% of the time in my right ear.

#20

Mine is in my left ear this is a new symptom almost several months later, Iā€™d imagine itā€™s some form of brain damage. Yeah Iā€™ve heard that about Lyrica it has a bad reputation but my pain levels need some management the pain is still there to a lesser extent it has also caused severe muscle weakness in my biceps, forearms and fingers.

#21

How many pills did you take and for how long