I'm gradually waking up...

Member Stories
#1

Mew I just have to say that I am very grateful for you posting on hairlosstalk.com or I would have never figured out what the hell was going on… On that note.

I just need to tell someone since everyone else [doctors] think I’m crazy. I’m trying as hard as I possibly can to think positive. At the moment every ten minutes or so I try to intentionally think positive and meditate. It’s absolutely exhausting.

As for my story…
I spend about 1 year 3 months on Propecia. I experienced “mental fog”, nothing was real, it was like being in a numb/in a completely socially isolated box. I started taking this “drug” at the age of 20 and took it for 1 1/2 years. I thought I was developing schizophrenia but didn’t make the connection (better to be schizophrenic with your hair than without your hair). I switched to Dutasteride for about three months afterwards during which the mental fog turned into full blown pyschosis, like everything I’ve experienced the past two years was a horrible dream. During this time I experienced intense/constant pain in penile skin (to the point it was difficult to walk), hardening of the penis, scrotal pain/contraction, decrease in prostatic fluid, vericose veins on the penis, ED/inability to get an erection, blurry vision, confusion, extreme fatigue, etc. I didn’t do anything because I was so “out of it” that I didn’t know what the hell was going on.

I stopped taking Dutasteride on 6/21 and restarted Finasteride. Once the side effects from Dutasteride didn’t disappear I stopped taking Finasteride. It has been about five weeks. I started getting a tingling sensation on a daily basis in my scrotum (although not nearly as intense as the aching pain I got while on the drug). My penis is basically completely numb and my scrotum is very “tight”. I hardly have any semen when masturbating, if I can masturbate at all. The mental effects are starting to go away and I’ve started to get panic attacks whenever I think about it which makes the mental side effects much worse.

There is nothing that I can do except wait. I’m waiting, and waiting, one day at a time… Some days my scrotum is less painful/tight and some days it is worse. I desperately want to know if this will go away in three months, six months, somewhat or not at all.

Perhaps the worst part is having everyone think you are crazy… It is hard to get sympathy when your “problem is psychiatric”.

I’m sorry for dumping all this on the forum but I feel like the course of my life has completely changed for the rest of my life because of this stupid mistake.

I’ve developed a major alcohol/drug problem, and any amount of encouragement, advice or insight would be greatly appreciated. I’m in a very scared, depressed and in a lonely place right now…

:) Not my BEST days. 3 pills dutasteride
#2

You are not alone…all the forum has the same problems…the same!

Just need to find the right doctor and try to recover by his help… some people did,than it is possible to do and… I want it for me,than me and all this forum together will write each other how and what to do to recover … we will need more time,but we 'll do it. I believe it also when I’m scared and when I feel depressed .

Believe it .

#3

Paxim most of us here in this forum have been depressed and scared
before. One thing for sure, time is our greatest ally, if you have not
read the Frequently asked Questions (FAQs) i suggest you do.

The FAQS contain many valuable information regarding various subject including what homonal tests that need to be done. If you can not
do exercise due to your fatique condition consider walking, take
a long walk this has helped me alot. Walking has been describe by many
as the best exercise, it improves blood circulation. Also after a long
walk i ussually fell a lot better (reduce my stress and depression)

Regarding your alcohol and drug probem (what drugs ?) just becareful
hopefully they do not create further hormonal imbalances in your body.

#4

How many people would describe themselves as moderate/heavy drinkers? I developed Beriberi Syndrome from alcohol use while these symptoms occurred. Once I started getting Thiamin injections the effects got slightly better-- hard to ferret it all out though.

#5

I started taking Propecia in 1/2007 and experienced very strange mental side-effects almost immediately. I thought “maybe it’s the Propecia” but then I read over the FDA documents and convinced myself that maybe I had brain damage from one of the illegal drugs I used. I knew something was wrong, but as time went on I just figured maybe I was just a weird kid (in retrospect it was a very stupid assumption as I was a completely different person). In 4/2008 I started taking Dutasteride and developed severe psychotic symptoms, complete lack of emotion, massive alcohol intake (which I suspect I was using to attempt to counter-act the effects of the medication). I grew extremely ill and slept almost 24 hours a day for two months, I grew breasts, had skin texture changes to a feminine style, my penis started bleeding/became sore and numb, I developed penile fibrosis, lost night-time erections, my scrotum tightened up to the size of an 8 year olds, my face became fatty and wrinkly, prostatic fluid disappeared, developed extreme testicular pain. In my psychotic state I figured I would switch back to the Finasteride as I didn’t have the most devastating side-effects from the Dutasteride. I still wasn’t “with it” think that maybe I should go see a doctor-- I thought the excruciating bleeding pain from the penis was from the type of soap I was using. The symptoms persisted and two months later I stopped the Finasteride. I was behaving extremely strangely and my parents thought I was going schizophrenic.

It has been two months and mental clarity is much better. I am completely conscious and “with it” but all my emotions are completely absent, memory is shot (I don’t remember ANYTHING from the past including my childhood-- photos and old keep-sakes don’t elicit any response from me what-so-ever), my sleep is completely fucked up (I will sometimes stay up for two days straight with no apparent reason or effects), and perhaps the worst part is I CANNOT LOVE OR FEEL LOVED. It is not psychological or situational, but chemical. I look at my mom and dad and feel nothing. I don’t get happy, sad, angry, hungry, scared, frustrated, motivated… nothing. I have no passions for anything, my affect is completely blank. I used to be a social butterfly-- my friends LOVED to hang around me, I was everyone’s best friend, and now I have difficulty hanging out in even comfortable social situations. I have extreme fatigue and peripheral neuropathy (I can’t feel my body properly).

I used to be terrified of dying, care about the world and it’s ills, I was amazing at work-- I now don’t care if I live or die (not depressed, I just don’t care), I don’t “recognize” my parents or loved ones, I don’t care to bathe myself or even watch TV (TV is all about the emotional responses-- drama, or comedy for example). I don’t care about politics because I have no opinions (another emotional response). Without emotions nothing elicits pleasure or pain. NOTHING. The whole world of people runs around doing things like hugging and kissing and laughing and crying which I can no longer relate to. I used to be the EXACT opposite of what I am now-- a over-sensitive loving person.

Dutasteride erased my “soul”. The ONLY positive side of this is that I also don’t feel any negative emotions otherwise I would have already killed myself. I will give it more time but I have no reason to exist if this persists.

LIVING AND LOVING IS ALL ABOUT EMOTION. Without it you have nothing…

1 Like
#6

I and others can relate to a lot of what you are experiencing and have experienced as a result of these medications.

Dutasteride has a much longer half life than Finasteride and as such the effects can last longer… regardless, as it’s only been 2 months off both drugs, you must give yourself MORE TIME.

  1. Besides that, you must take action to see where the problem might lie – you need BLOOD TESTS per the list on this site: propeciahelp.com/forum/viewtopic.php?t=92

  2. You could also consider filing a class action in the USA so that others could jump on board, to get answers and compensation from Merck or GlaxoSithKlein about the damages caused from their drug.

  3. You could see Dr Shippen or Dr Crisler, 2 doctors who both recognize the dangerous effects of 5AR inhibitors and as such, are open to trying treatments that may help with recovery from their effects.

I will be brief when I say this, but taking your life is not the answer. Generating awareness, taking action, and working with knowledgeable doctors and researchers who can actually help and eventually, hopefully solve the situation is far more important.

It is really early days yet for you, but I can relate because it literally took me at least 8 months before things even began to start clearing up in the mental department. 3 yrs on, mental clarity is much better compared to when on the drug… the emotional flatness, while still present, is of a much lesser degree… and feelings, while not as strong, do slowly return, and continue to return.

Keep in mind this is coming from a guy who hasn’t tried any drug treatments yet to boost Testosterone or Dopamine so I have no idea if trying such things would in fact reverse these issues… but it seems plausible in my mind since they are both interconnected, and like others most of these mental problems really started to get bad after quitting and Testosterone levels crashed.

The first step is to assess where your body is at hormonally and thus I would make that a top priority, so you can evaluate next steps.

#7

I experienced the same sides as you after taking Dutasteride (scrotum shriveled up, penile fibrosis, numb penile skin, lack of nighttime erections)? Do you think any of these things have gone away with time? How bad was it to begin with and how long did things take to go back to normal? The Dutasteride seriously fucked up my genitals to the point they were bleeding/sore, and caused major psychiatric symptoms. I couldn’t even wear underwear without excruciating pain.

#8

While I’m not Mew, I can offer you some advice… and at the very least… hope.

I experienced some genital pain, mainly in the testicles. This occurred after ejaculation (particularly worse for masturbation than sexual intercourse) and sometimes at random times. I went to a doc about it, who declared it a mild form of epidydimitis, I took an antibiotic, and the pain went away. I mean–it went away completely. now, it could be that it was just a time issue (took about 2 months after quitting propecia for it to quell) or actually the epidydimitis, but it indeed go away. Some important questions to ask are–Have you been to a doctor to make sure it’s not some sort of inflammation or bacterial infection causing this? How long has it been going on? Are you on or have taken any medications that exacerbate this? Do you drink alcohol in excessive amounts and/or frequently?

In regards to erections, they seem to get better with time and with supplementation. I’m a big supporter of Zinc, L-Arginine and Yohimbine (all natural supplements), so if you aren’t using or haven’t already tried them, I’d check’em out.

I wish you the best… and hope this helps (I know I’m not Mew).

#9

Overall I’d have to say no, but they have lessened a bit in severity since quitting. That’s not to say things have gone back to the way I used to be before the drug, however.

  • scrotum shriveled up: still present
  • penile fibrosis: still present, though not as bad as when I first quit
  • numb penile skin: still present
  • lack of nighttime erections: improved however they are infrequent and not as strong as before drug

Really bad. It took at least a year for things to even begin to start improving at all “down there”, even if it was only 10-20%.

As I mentioned in my previous post, I would concentrate on getting bloodwork and perhaps seeing Dr Goldstein (Urologist) in San Diego if you are concerned about genital tissue changes. He has seen guys like us before as a result of the drugs and is at least supportive in his approach.

#10

I’ve been losing weight like crazy and have completely lost my thirst and hunger. The skin on my hands is dry and heals very slowly. I’ve been getting anxiety so bad that I’ve been pacing back and forth (initially for three weeks straight for 24 hours per day with only an hour or two of sleep per day) and currently pacing all day until I pass out. I have completely lost all sexual function after nearly two months of feeling like death with intense burning and stinging sensation in my genitals, testicular pain, scrotal retraction, and perianal bleeding, skin changes, numbness, complete fatigue, you name it. I look at my parents and I don’t even recognize them. It’s like I’m living another persons life. I’ve completely lost all emotions, I can barely see without constantly looking around the room, I cannot interact with people on even the most basic level, my memory and cognitive abilities are shot. I can’t even sit and watch TV (I just can’t even understand it). My family doesn’t believe what is going on and thinks I’ve got Dissociative Anxiety Disorder (anxiety my ass-- but I can understand how he wouldn’t want to believe it, even if he really believes it). I can barely speak in sentences and my IQ has got to be 90 points lower than it was. I’m no longer producing tears, mucus, or saliva. I’ve got gynocomastia and central weight gain. I make spelling mistakes all the time and can barely put sentences together. I’ve lost my livelihood (programming). I’m just taking up space-- the person I was would never want me to live like this.

It makes me feel better that I can just stop eating (hopefully without too much pain) and die. I refuse to live like this. Perhaps I’m luckier than some because I don’t have a choice.

I ignored the symptoms for too long in my drastically altered state of mind with completely idiotic delusions for why I was experiencing so much pain. I so much wish that things could have been different but enough is enough.

I’m no longer human-- I don’t belong here. I’m really hoping this drug kills me so I don’t have to do it myself. I don’t think my family and friends would ever understand a suicide but if they really knew the meaningless ghostly hell I’ve decended into then they would understand.

FUCK DUTASTERIDE!

Dutasteride, as bad as it is, may be quite a bit safer than finasteride in the long-term
Italian story on PFS featuring Professor Melcangi: Finasteride: the risks of the drug against hair loss
#11

While I sympathize with your situation, suicide is not the answer. Taking action is. To that end, I provided my thoughts on 3 different actions you can take in my initial post above, in this thread. I would recommend you see Dr Shippen or Crisler, get the necessary bloodwork, and figure things out from there. But to just sit in your room and do nothing, you will go stir crazy.

We all know Dut has a longer half-life than Fin, so I ask you to be patient. Improvements will come in time, it just may take you a bit longer than it did for us. Irregardless, seeking medical help from docs who recognize the dangers of these drugs is probably your best course of action at this stage.

Good luck to you.

#12

Wow sadly this guy did commit suicide. What a sad shame.

#13

Murderers of this guy are still free…

#14

Those Murderers have names, Kenneth C. Frazier thank you for killing our brothers!

merck.com/about/leadership/b … /home.html

#15

Yes…

Patrick Ortiz

Randy Santmann (OP)

Daniel Stewart

John Pfaff

Plus many more not linked to the drug that have taken their own lives

#16

The OP captures the experience of this condition so well. The way everything feels so empty and disconnected, there are no feelings for anything or anyone, everything is just hollowed out. This isn’t depression, it is just nothing. There is just nothing there, it’s like the feelings have been entirely switched off.

#17

Exactly gelhead, and with an unthinkful non supportive family is even worse.

#18

This is PFS. Not a simple hormonal fix. We are in hell.