Anyone take Propecia Long Term & Quit w/out Problems

[stan]

i think you shd ween off..... . you know reduce it to .25 daily, then twice a week, then constant doses below .2 mg and then intermittent and stop, over a period of 6 8 months maybe.

[Karlton]

It definitely seems like there is growing evidence that some people's endocrine systems are permanently messed up by finasteride. It is disconcerting to say the least. I personally have benefitted, and continue to benefit from this drug, which makes the decision whether to continue treatment extremely difficult, in light of the recent PFS evidence.
I have never had any issues, and I have my organs and hormones checked regularly. I planned on taking the drug forever, as crazy as that may sound to some people. I have shaved my head before, and I hate the way I look without hair. Finasteride has given me comfort over the years by keeping my recession at bay.
Personally, I feel like the best thing I can do is to stay on the medication until more is known about the withdrawal and weaning off process. If this problem becomes more prevalent in the coming years, there are going to be hundreds of thousands of men affected, and the drug companies are going to have a serious sh*t -storm to deal with. If there are studies being conducted, then more information will begin to surface in the coming years, and we will eventually all know more about how to safely quit the medication if we choose, and what course of treatments may be necessary in conjunction with weaning off.
I have thought about quitting, but I am just not ready to be bald first of all, and if it is likely that quitting will cause complications, I would like to see more of these scientific studies reach some kind of consensus
on the best course of action before I simply stop the treatment on my own.

[blakes33]

Hello Blakes33,
Do I understand correctly that you quit fin in 2011 and have been having problems ever since? I have been on for about 13 years myself, with the exception of one short break at the 10 year mark. I have had no issues beyond the occasional testicular pain/low libido. What sort of problems are you having, and what specifically has brought you back to the forum today? How has your hair held up? Forgive me if I've missed something.
Best,
Karlton

Karlton,

Thanks for your response. Sorry it took awhile to get back.

Yes, that is correct - I quit in Nov 2011 for just a "break" and to prove that all the fuss about the drug that it could cause permanent damage was not true. I had seen the George Washington University study and it made me a little nervous, although I had taken the drug for so long without any real side-effects (until the very end of usage), I thought it was surely bogus or biased. So I just thought, I've quit before for several weeks to give my body a break and been just fine - I'll do it again and then feel better that this information and fuss about Post-finasteride syndrome isn't true or real.

Symptoms are sort of difficult to explain, because this is not a problem in which you develop a few symptoms, it is truly a whole-body or hormonal system shutdown. I don’t want to list everything here, as it is personal (look in your PM Inbox for details). Overall, metabolism has slowed to almost a shut-down with all symptoms of a hypogonadal condition, even though my testosterone, estrogen, free T, etc.. levels all "show" to be in perfect normal range! So, my body responds as if my hormones are not there at all.

The two studies being done right now, one at Baylor College of Medicine headed by world-renowned Dr. Mohit Khera and the other at Harvard University are both looking at the two most prevalent theories to describe what happens in PFS - that there is brain-damage (neurosteroid levels altered) and that the androgen receptors have become sensitized so that testosterone and DHT cannot be absorbed by the body anymore. They are beginning to think it is NOT only happening to men that have some sort of genetic pre-disposition - how do I know this? *Because Dr. Khera did genetic testing on me, testing my number of CAG repeats and mine were completely normal showing I was a "good responder" to propecia (which of course I was for a long time).

The two studies by the way, are investigating and looking into almost EXACTLY what this comprehensive article (The 5ARI Withdrawal Syndrome) reports on. --> http://www.protocol-online.org/forum...1282061244.ipb

One more side-note: I ran across this article yesterday and it made me really feel for the loss of this family. This good-looking bright young man took propecia and his damage from the drug led him to a place of desperation and hopelessness. His family has asked that in lieu of flowers/cards, donations be sent to the Post-Finasteride Syndrome Foundation. He was a Doctor (PhD) and Professor of Criminal Justice, where he taught at University of North Texas. His story here --> http://www.pfsfoundation.org/news/da...art-1976-2014/

[Andrew Vernon]

Blakes33

For me initially taking Propecia made me ' Cloud headed ' and my inhibition to have sexual urge was slightly diminishing . However after switching to Proscar and lowering the dosages . I found that I have regained all my faculties again .

[Karlton]

Hi Everyone . I took Propecia in 2006 and noticed that it certainly helped . Propecia is expensive and I was told by a Doctor that taking Proscar would be far cheaper option. I was told do divide the tablet into four equal segments . Throughout the years I have decreased the dosage . I divide a Proscar tablet into four equal segments . Take each proscar segment on a Monday , Tuesday and Wednesday .... I then proceed the same
scedule the week after . This certainly worked for me .

And how does this pertain to this topic, or the situation that Blakes33 is going through?

[Andrew Vernon]

Hi Everyone . I took Propecia in 2006 and noticed that it certainly helped . Propecia is expensive and I was told by a Doctor that taking Proscar would be far cheaper option. I was told do divide the tablet into four equal segments . Throughout the years I have decreased the dosage . I divided a Proscar tablet into four equal segments . Took each proscar segment on a Monday , Tuesday and Wednesday .... I then proceeded the same
schedule the week after . This certainly worked for me .

[Karlton]

Over the 13 years I took the drug, I would occasionally quit for several weeks (even as long a 3 months around year 10) just to give my body a break. It wasn't until quitting this last time, around end of 2011 that the symptoms struck me and the nightmare began... I was a great responder all those years with no side-effects, until the end of my usage of the drug, and in particular after I stopped it.

Hello Blakes33,
Do I understand correctly that you quit fin in 2011 and have been having problems ever since? I have been on for about 13 years myself, with the exception of one short break at the 10 year mark. I have had no issues beyond the occasional testicular pain/low libido. What sort of problems are you having, and what specifically has brought you back to the forum today? How has your hair held up? Forgive me if I've missed something.
Best,
Karlton

[blakes33]

Over the 13 years I took the drug, I would occasionally quit for several weeks (even as long a 3 months around year 10) just to give my body a break. It wasn't until quitting this last time, around end of 2011 that the symptoms struck me and the nightmare began... I was a great responder all those years with no side-effects, until the end of my usage of the drug, and in particular after I stopped it.

[blakes33]

I'm even MORE interested to know (and there seems to be NO answer to this) if someone who had no problems on the drug but developed major problems after quitting, RESTARTED the drug and if it restored them back to health again!!!!

[blakes33]

Anyone else multi-year user of propeica and ended up OK after quitting????

Or like me, did problems emerge months after quitting?

[blakes33]

Yeah - not many worries until I found out the new information on propecia side-effects that have been recently released that are permanent.

I do realize that at 65 sex may not be that important anymore. But, at 35 my friend, loss of sexual ability is akin to losing the ability to walk!!!

[bob13]

Blake what happened to you.

Why ask now after taking it for 14 years . sounds really strange.
Just quit for 6 months and find out.
Your asking questions nobody can answer.
Everybody body is different.

But you'll lose a lot pretty soon.
Just take the pill and forget it.
Im old couldn't care less about sex.
I've had plenty.

[blakes33]

I have never heard of anyone developing side effects after stopping when they had no side effects on the drug. I suppose anything is possible, but it is certainly not "many" men who experience this. I stopped almost 2 years ago after being on the drug for 12 years. All my hormone levels went back to where they are supposed to be as soon as I quit. A few days after I stopped the drug, I noticed slightly improved sexual performance and the return of morning erections. I guess I lost these while taking the pill and never even realized it.

As far as hair loss goes, I noticed some increased shedding starting a couple of months after I stopped and lasting several months. Nearly two years later, my hairline has thinned some, but I am certainly not bald as I thought I would be.

How aggresive was your hairloss when you started propecia? Was it frontal hair-loss?

I am kinda glad to be off now for 11 weeks but very worried I will have "catch-up" hairloss soon if I don't start back? I don't know if it's true that happens (Merck claims it does) but will I really go bald within a year?

[blakes33]

Yes, I had all my hormones checked before I stopped, one week after and one month after because I was paranoid after reading all the hysteria online. My testosterone went from about 700 while taking the finasteride, up to over 1,000 a week later, and then finally back down to about 650 afterward due to the decrease in free testosterone caused by the conversion of DHT. I had read that finasteride actually increases your testosterone levels a little bit so this was an expected outcome. I also saw my DHT level creep up from about 15 before to 25 at one week off and about 70 after a month (a normal level).



Are you having side effects other than the pain after sex? It sounds like you're doing just fine. Trust me, if you were having some kind of hypogonadism or some of the other awful symptoms people talk about having, you would know it for sure. And you are not going to start having bad symptoms at 7 weeks off if you don't already have them.

Ryan,

I had my hormone levels checked also - at 5 weeks out and everything looked good according to my Urologist. Testosterone was 564.

Yes, I am having some side effects like some difficulty with libido, getting good erection, etc. but I have been worried A LOT (from reading forums and hysteria as you mentioned) so I do believe (and hope) that this is psychological. The ONLY possibility it seems for anything to have gone wrong would have to have been after 5 weeks - and from what I have read of the horror stories most people know they have issues by 5 weeks out (most seem to know in the first couple to 3 weeks...).

I am actually considering going back on propecia and weening off VERY slowly. After all, I wasn't having ANY issues when I was taking.... IF my hormones are heading for a "crash" i would think the drug might offer some protection against it.... long enough then to figure out what to do/ ween off slowly to let my body adjust over longer period.

I would however like to have my levels checked again - What type of doctor checked your levels? How did you convince him/here to check three times like that in the course of only 1 month!!?? Lastly, did insurance pay or did you have to pay out of pocket to get that many in that short of time? (wish I knew of a lab i could walk up and tell them what to test for for couple hundred bucks...)

[ryan555]

Thanks Ryan - great to hear from someone who took this longterm like me. I have been on since it was approved (~13 years). I'm like you for the most part - no problems at all really with the drug over that long period (dry skin and few other things at the end). Just curious, since you weren't having problems, why DID you decide to stop taking it?

I stopped because I developed an unrelated health issue and my doctor wanted me off all medications while I am recovering.

Did you have ANY adjustment period at all when you quit? - after all, your body goes through a hormonal shift (good thing) when the DHT is no longer suppressed. For me, I have noticed some testicle pain (particularly after sex)that is troubling, but hopefully is just my body just re-adjusting.... Did you quit cold-turkey?

Yes, I stopped cold turkey. The only adjustment was that I think my testosterone spiked for about a week. My sex drive was off the charts as I recall and I felt a little "amped" up.

When you say your hormone levels went back to normal - did you check them or did you just know by the way you felt?

Yes, I had all my hormones checked before I stopped, one week after and one month after because I was paranoid after reading all the hysteria online. My testosterone went from about 700 while taking the finasteride, up to over 1,000 a week later, and then finally back down to about 650 afterward due to the decrease in free testosterone caused by the conversion of DHT. I had read that finasteride actually increases your testosterone levels a little bit so this was an expected outcome. I also saw my DHT level creep up from about 15 before to 25 at one week off and about 70 after a month (a normal level).

Thanks for your input. I am at week 7 now without and hoping I recovery well...

Are you having side effects other than the pain after sex? It sounds like you're doing just fine. Trust me, if you were having some kind of hypogonadism or some of the other awful symptoms people talk about having, you would know it for sure. And you are not going to start having bad symptoms at 7 weeks off if you don't already have them.

I thought of two other side effects from the drug that became apparent only after stopping and having them reverse. First, I have noticed a definite increase in body hair since I stopped. Second, I have a stronger urine flow now that I'm off. That one still seems strange to me because the drug is supposed to shrink your prostate and should therefore have the opposite effect but I can say with certainty than this was the case for me.