About half of men who are 50 or older suffer from male-pattern baldness. Some men may even start losing their hair in their 20s.
Merck introduced Propecia (finasteride) to treat hair loss in 1997. It was an instant hit. Nearly half a million men filled prescriptions for it within a year if its release.
Mo, a Propecia victim from California, is my guest on this Drugwatch Podcast.
He contacted me after reading Drugwatch’s coverage on Propecia.
His goal is to spread awareness and warn others about the drug.
He started taking it in 2009 at age 26.
“I remember I was so conservative about the side effects, and several times I asked the doctor if there [were] any side effects with this drug,” Mo said. “But they said no, it’s totally fine.”
In fact, they said it would protect him from having an enlarged prostate that could lead to cancer.
Mo took the drug for seven years. When he stopped, the side effects began. He suffered severe insomnia, panic attacks and muscle problems.
“I was like a zombie,” he said. He lost a relationship and his job.
After he did some research, he found the Post-Finasteride Syndrome (PFS) Foundation. The support group helped him understand his condition.
Mo begs other men, “Don’t take this horrible drug.”
The U.S. Food and Drug Administration updated Propecia’s label in 2011. It warned about male breast cancer and erectile dysfunction.
In 2012, the FDA added more sexual disorders to the warning.
Hi. Welcome to another episode of Drugwatch Podcast. I'm your host, Michelle Llamas, and today I have a guest with us who is going to talk about his experience with the hair-loss drug Propecia. His name is Mo and he's calling in from California and he's got a lot of stuff to share with us that could possibly help people that are thinking about taking this drug, or that have already taken the drug in the past. So, welcome to the show, Mo.
Thanks, Michelle, for having me on your podcast. I really appreciate all the work that you guys [are] doing in Drugwatch.
Well, thank you very much for agreeing to speak with me because these kinds of things are not easy to talk about. So thanks for sharing your knowledge about this and I'm sure you're going help a lot of people. So let's start in the beginning of all this. When did you first hear about Propecia?
So actually I heard about Propecia, maybe, long before even I started, so I had this friend of mine that was talking about it, but he never took it. But he told me that there is this drug that recently came out. But when I started it was, I guess, 2009. I was just starting my PhD and just noticing I'm losing some hair. It wasn't that much but was bothering me. I didn't want to lose hair. I talked to a doctor and they said we can prescribe you Propecia. I remember I was so conservative about the side effects and … and several times I asked doctor if there is any side effects with this drug. But they said no, totally fine, even you benefit from controlling the prostate size because when you age and the man's prostate is going to go bigger, and you don't lose your hair and even you don't get any prostate size issue. So I start taking it back in 2009.
Wow, so you saw, "Hey, this is great, I'm gonna get my hair back and I'm gonna be protected against prostate cancer," right? So this is good, what a good drug. And so how old were you, when you started taking it?
I was 26.
Wow, so you were pretty young when you first started, right? You found out later that that wasn't the case, that the drug actually did give you some problems. Can you talk about what kind of symptoms you started to have from it?
So that's the horrible thing about this drug, it has different ... after I had this post finasteride syndrome, they call it PFS, I started to search on the internet right-
Hold on, before you continue, let me say for people listening that the generic name for Propecia is finasteride, and like Mo says, some of the doctors and people that suffer from the symptoms call it post finasteride syndrome because it happens after you take Propecia. Go ahead and continue, Mo.
So most of the men that have this issue, maybe it starts after you stop taking the drug, after you quit the drug. So for me I was on it for 6, 7 years. So I didn't notice any side effects. But this is not true about all men. I've heard even after several days of using it. For me, I was in it for 6, 7 years, I haven't noticed anything. For me, it started after I quit the drug.
So why did you decide to stop taking it? 'Cause if you were okay for 6 or 7 years, did you just say, "You know what, I think I'm done taking this drug?"
This drug is for prostate cancer and you're taking it for a long time. I knew that prostate cancer dosage is 5 milligrams compared to 1 milligram for the hair loss, better stop taking it because become concerned about your health, and so I said, "let's quit this drug" I took it for so many years.
So you were 26 when you started, so you were about 33, when you stopped?
33 ... yes, 32.
So, still again, still young. So then that was when you started noticing things sort of going wrong there. What was the first thing you noticed?
So I guess for me it started maybe several months after I quit. So the first instance I even didn't notice this is from finasteride. I started to become desperate ... I remember I was one day in my office and out of nowhere I just started crying. Out of nowhere. I didn't know why. And I called my girlfriend and told her, "I'm not the same Mo as before." I don't know what's happening to me. But I said maybe ... I don't know because of work or I don't know anything. The worst symptom hadn't come yet at that time.
Then I was feeling weird on my body and telling my girlfriend, "Something happening to me but I don't know what's that." So this had past and maybe one or two months after that I start a feeling muscle twitching all over my body, everywhere. My face, my thighs, everywhere in my body started twitching. Then I searched a little on the internet and I said, "Maybe I have no magnesium." Then I start taking magnesium but the muscle twitching still, after several years, is there. The worst nightmare started. I lost my sleep, 100 percent.
So you got insomnia. Is that what happened?
Yes, complete insomnia. I couldn't sleep even one second. No one believed but even one second I couldn't sleep. Then I went to urgent care after several nights of [sleeplessness]. I couldn't do anything. And then went to the emergency room and they prescribed me some benzodiazepine. And I took it for one night and I slept and the next night I said, "Okay, I'm fine. I guess it was just one night." Then, until now, I think some nights, I take it even after several years of quitting.
Wow. So you became almost a permanent insomniac? And we gotta tell people too that, they might say, "Oh, big deal you can't sleep." But if you can't sleep that affects a lot of other things in your body, right, your mental functioning, your ... everything, your physical functioning so sleeping is important. So, that probably caused a lot of issues other than that.
Yes, that's right. So when I start losing my sleep, maybe after several weeks, I had a horrible panic attack. I didn't know what… I hadn't experienced panic attack, so I called my friend, I want to go to emergency room. I don't feel good. And on the way to the emergency room, on the highway, I pull over on the highway shoulder and I was shouting at my friend that I'm dying, right, I'm dying, and it was a horrible panic attack, it was my worst experience. After ... even at that time I didn't know this is from Propecia.
No, of course not, I mean, a doctor told you there's no side effects so this can't be.
So to summarize it, I totally lost my sleep. I had several horrible panic attacks. Every other week I was on the emergency room.
Wow, that's scary. For so long you just kept going back, I guess you didn't know what was happening.
I didn't know what's happening and then I totally lost my hope ... even I was telling myself maybe I should get rid of this life, because [it] was just torture, all day and night was getting tortured. I didn't know what's wrong but now imagine you couldn't sleep at all. I was waking up constantly. Maybe til morning I was waking up 15, 20 times, and I couldn't get enough sleep. I had panic attacks. I mean, it was crazy. I was crying over the phone with my family and I was telling them, "I don't know what's happened to me." I couldn't understand it anymore.
And you said, you were doing your PhD. You were doing a lot of things. You were pretty successful working, doing, and going to school, doing all of that, so, this is definitely out of character for you, right, because you had everything together?
Some people say that PFS is a hoax. Believe me, it's not a hoax. I … read many stories of men like me online or in the internet… [on the] Post-Finasteride [Syndrome] Foundation … that supported people like me. There are horrible stories of people that even committed suicide.
And you said you thought about it, right, so it's definitely something that's not rare amongst men that are suffering this 'cause I know that I've talked to other people that have had the mental issues, too, the mood problems, the depression, and they were fine, before they started or stopped taking it.
I was totally healthy and I couldn't believe this happened to me. I didn't know what is happening. I was crying. I was depressed. I had panic attacks. I lost my sleep 100 percent. And I was the best version of myself before this. I could conquer the world because, you know, I came to the U.S. I landed a good job in California. But out of nowhere, this happened to me and I couldn't believe what is happening. And all this torture, I was ready to take my life even.
You talked about what you were like before. How has this affected your life after? How did it change your life?
After, my life is ruined. I couldn't work. I remember I had several meetings with my HR. I couldn't do anything. I was just not functional. I was like a zombie.
What about your personal life you said you had a girlfriend at the time? Did that affect your relationship with her?
Yes, sure. I was losing everything. I was losing my life. I was losing my work. I was losing my relationship because it was crazy for her, as well, living with a person that every other week goes to the urgent care and was calling ambulance, and … coming to my place every other week and take me to the emergency room. Everything was crazy at the time. So, I'm saying, I was ready to take my life, but something in my mind didn't allow me to do that.
Well, thank goodness for that, that you were able to survive. So what did you do to try and cope? You talked about how you took some drugs to help you sleep. What do you do now to try and cope with the symptoms because you still have them, like you mentioned, right?
I know that something happened, I guess. For me, fortunately, it wasn't sexual. So many out there that they have sexual problem as well. But for me it was just the mood and the brain thing. The neurotransmitter in my brain got messed up. There is no cure or no remedy for it. So after a year, it just gets better. Even right now after several years I'm, like, two years off of Propecia. But still, for example, this morning, I couldn't sleep. Some nights are crazy. But I just hope … I talk to many men like me, [exactly] like me, that they have the exact same symptom like me. They are off Propecia for 6, 7 years, still they have issues. Hope the body adapts and ... it gets better, but I just hope.
Because there's really not a lot of studies either on this? I think you mentioned that some doctors don't even believe it exists.
I was telling my ... so I was seeing a psychiatrist every other week for a while, and he didn't believe in it. I told several doctors so I was in the hospital doing all kinds of test because they didn't know what's wrong with ... So they perform many test on me, but they couldn't find anything, and they thought it's just a ... I'm making up the story. But it was crazy, they couldn't find anything. I didn't know what's wrong then I went on the internet search. I said, "Maybe this is because of the Propecia."
Because you started thinking well, what else could it be at that point?
Because they couldn't find anything. I did sleep study with a doctor and I asked him, "What's wrong with me? This is just torture. Please help." And he said, "There is nothing wrong with you."
So they couldn't help you.
Your sleep study is fine. There is nothing been found. Maybe you snore a little bit but that's it. Maybe you have a little bit of the sleep apnea, but I didn't have it. Wasn't the root cause of the issue, I knew that. I knew that. But I started searching the internet and then I came to light. I found many men like me, horrible stories. On Propecia Help and the PFS Foundation, and I've been in contact with many people like me. They lost their sleep. They tried everything. I tried what they told me to get some hairball thing to get ... But nothing helped. Nothing helped. To this day, I don't know what kind of drug could ruin your life like this. I couldn't think of anything that could devastate your whole life.
And when you think about it it's not a life-saving drug, right, it's not ... it's supposed to be just for hair loss but then it ruins everything else.
All the men out there that may be listening to this podcast, please don't take it. Don't take this horrible drug. I was thinking even if someone was telling me at the time that this might happen to you, maybe I didn't believe them, but … out there if you listen, just don't take this horrible drug. Don't take it. It just ruined my life.
So now I bet after this drug I'm sure it changes the way that you think about all drugs, or going to the doctor or anything. Does it make you want to do more research before you take anything?
Yes, totally. I totally lost my trust on drug companies because this prescribed [to] me by the specialist… There are doctors and telling me, "It's good for you." But right now I just totally lost my trust on the drug companies, on every doctor. I go by my space, going forward, try to do a little bit of research and be more cautious about taking any drug.
Thank you so much for coming on the show and telling your story and again I'm sure that there are going be people that listen to this and that either learn something new from what you've said or decide, "You know what, I don't think I'll take Propecia," so I think you've done a good thing. So, again, thank you so much.
Thank you for having me again.
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