My miserable experience with propecia - numb to life

Member Stories
#1

I’ve been to the site many times to research solutions but haven’t engaged because I don’t have the energy. So here’s my story…

I was about 23 when i noticed i was losing my hair. I tried Rogaine one day but with my hair it was very noticeable and disgusting. I’d heard about Propecia and decided to try it when I could finally afford it. I didn’t notice the sides immediately but reflecting back I began to feel fatigued during this time. I started when I graduated and had a real job when I was 25/26. I was working a lot and didn’t notice a lot of sides at first. I began to feel more and more tired and it was taking more effort to complete simple tasks.

During this first solid year I started resting more, gradually getting more and more tired. But it would come in waves, sometimes I would be exhausted and others my energy would seem normal.

During the second year things went to hell. My concentration, memory, energy, my entire body became weaker. The biggest key was that I was so lethargic and depressed I didn’t realize how bad it was, kind of like a person who is succumbing to carbon monoxide poisoning. I was dating a girl at the time who liked giving blow jobs and we kept doing this instead of sex. I started not to like sex as much, I’d become desensitized slowly. And I realize now that the blowjobs were great because I was too tired to fuck anyway. But oddly enough I didn’t care that much at the time…

Enter into the third year, I dropped out of grad school, had to quit my job, and the girl didn’t want me anymore because I was “acting like a woman” (the first of a few girlfriends who would tell me this). I was so emotional and all I could do was go to my new job and come home and watch a movie until I fell asleep. And I slept for at least 10 hours a day for this last year on the drug. 12 on the weekends.

During this time I started seeing doctors to figure out what was wrong with me. The standard panel blood tests all came back fine. “Propecia doesn’t do that” I heard.

So after numerous years and some months of solid propecia use I quit (mid 2008), not knowing what else it could be. Long time, I know. Shows me for trusting doctors. But my hair did grow back to a full head even in the frontal areas.

I quit because I realized I wasn’t able to to get an erection at all. I had a brief period of recovery I think then it fell off again. Months later a girl I met before was coming to visit and I knew we would be having sex. But I started to panic because I couldn’t get a serious hard on. Previously I didn’t notice because I wasn’t out looking for sex or even masturbating, all I did when not working was sleep. So she arrived and couldn’t believe how I looked, she said she noticed the change in my pictures over the last 3 years, that I didn’t look like myself anymore. I had stopped looking at myself because I didn’t recognize the person staring back. My face was totally puffy and androgynous.

So after a week with her I started to rebound (I think it was from being close to a woman for a period of time) and had a weeklong hard on that never fully went down and total change in appearance and body chemistry (scent), a temporary recovery. Then I went back to sleeping alone again and totally lapsed. Since then it’s been up and down, mostly down. 11 months later and my reflection is still a stranger.

A list of my sides:

  1. I feel old, OLD, like I’m 60 and I’m only 30

  2. After a year off only minor hair loss (I keep hoping it will fall out)

  3. fewer and weaker erections, less ejaculate, low to no libido, no “sex” scent. The frank and beans have fluctuated, mostly they have shrunken with the penis becoming shriveled and fibrotic. Morning and Nocturnal erections are basically non-existent. Random erections don’t exist. Exercise seems to help but sometimes it makes it worse. Sometimes I can get an erection but it’s a soft-on, penetration is difficult if not impossible. I don’t get the erections that have to be dealt with before going into public anymore. The balls are awful. They used to “suck in” and get so tight and wrinkled when I was aroused or cold they would hurt. Now they seem to just hang, sometimes lower than the penis itself. And I get erections where they don’t tighten at all.

  4. physical changes including puffy face, sunken dark eyes, & fluctuating weight loss/gain

  5. brain fog & depression

  6. panic attacks (lessened but have led me to thinking I was having a heart attack).

  7. muscle atrophy, stiffness & fatigue: my muscles have weakened and my joints pop horribly like the tendons and ligaments are too weak to hold them in place. I can’t get my heart rate up too high because it exhausts me. I seem to have energy when I rest enough and then get exhausted quickly when I try to work out.

  8. eye problems: my eyes have become dry, old, weak, and sensitive to sun, wind, and somewhat night blind.

  9. skin problems: my complexion changed and I stopped tanning and started avoiding the sun - total opposite from before. I also developed acne on my forehead and back, something I’ve never had, it’s gotten worse since I stopped

  10. depression & numbness in my entire body. This is to the point that when I do have sex often I can’t feel anything. Have lost approx 50% of feeling of touch in my entire body. And I don’t care much for human interaction anymore. Impaired taste, smell, hearing

  11. drug sensitivity: I am very sensitive to all drugs now including ibuprofin, caffeine, alcohol, most induce panic attacks if not immediately then after.

  12. digestion problems: I used to be lactose intolerant before starting propecia. I began to be able to digest milk products about 3 months after starting propecia continuously. But it feels like my digestion slowed greatly and I have lots of air in my stomach. Ties in with next point

  13. metabolism slowed: My body temp has dropped by at least a degree and I can’t tolerate temperature extremes anymore. They make me tired quickly and I don’t adjust. I had to shut all air flow to my office. And food stays in me much longer than it used to pre-propecia. One interesting thing I’ve noticed to go along with the stomach noises: quality protein and green vegetables cause food to pass through my intestines. When I eat grains, fruits, sweets, oatmeal, and other similar foods I just get thirsty and urinate a lot and gain water weight. I don’t have diabetes, I’ve been tested every time I see a new doctor, at least 5 times since coming off fin.

  14. Sleep problems: I sleep but I don’t rest and rarely do I dream, like I don’t get into deep sleep

Some of the sides have subsided since their peak and there seems to be slow improvement. However I still have days when I feel awful like I’m still on the drug. I’ve tried a number of supplements but they seem to overload my system or I become tolerant to every one in a short period of time:

melatonin
GABA
vitamins
zinc w/copper
quercetin & bromelain
etc.

After reading many user stories and spending $ thousands $ on tests that come back normal (blood, intestines, hormones, chiropractor, physical therapy) I’ve given up thinking that medicine can solve this, especially from an ignorant medical community who is pushing this poison in the first place. I used to be an extremely horny and adventurous mid 20s guy who started losing his hair. Now I am a 30 year old (wo?)man with hair feeling like I’m 70. I don’t care much about life and I think about driving off a cliff at 100 MPH.

This being said I have had a few rays of hope.

I became very ill 5 months after stopping the drug, I ate a contaminated salad made by a latino in a DC restauant. So I think the bug/virus came from Latin America. This was in my liver and anything I ate for 10 days went straight through me, we’re talking 15 minutes. I’m not sure what it was but think it was in my liver as well as intestines because bile was coming straight out of me at times. After the worst part stopped I traveled to Russia to visit the girl who came to visit me before and I drank a lot of Kefir, a yoghurt type drink made with a bacteria & yeast for a week. During this week I started to feel much better and by the end got regular hard ons again. (Mew, you seem to have had a similar experience)

Then on the way back I stopped by amsterdam for 3 hours, ate 2 space cakes, and smoked 3 joints (not very strong stuff). Over the next 2 days I started to feel great and look young again. Then I felt amazing, 100% back to normal, bright eyes, full energy, normal sleep patterns and hard ons. It was amazing. Then I started to taper after about a week and in 3 weeks was back to where I started before getting sick.

Diet and exercise has shown promise and some improvement. By diet I mean atkins oriented, especially no refined sugar, bread, caffeine. Lots of meat, dairy, vegetables, fruits, and plain kefir (no sugar).

When I first started exercising I was exhausted before beginning. I started very slow. Now after 4 months I focus on some sort of low intensity cardio (heart rate averages about 100 and sometimes gets to 130) and wieght training. Weight training is one of the few things that we can do to naturally change the hormone structure in our bodies. I’ve read from other users on this site that it can over a 2 year period increase the testosterone level. What I’ve found so far is that it seems to be helping me in a consistent, positive way more than anything else. So I do light cardio 1 day, weight training the next, and then take a 1-2 day break. But I don’t overdo it for any reason…and I still don’t care much about anything :frowning:

I’m curious if any other users are still having success with weight training, diet, and exercise.

Being around a woman seems to help dramatically also. The reaction is much slower than it used to be, sometimes it can take a week before I start to respond. It is a catalyst for me though.

So, now my theory on what happened. I obviously created a hormone imbalance in my body. If it was only due to a lack of DHT I don’t know. It seems that given the number of problems I have finasteride may have fucked other areas of my liver. Before I found that the sides were due to propecia I thought I had a fat/nutrient absorption problem because my skin and eyes were so dry, I literally felt like I was dying. Maybe this stuff affects other enzymes too. Like all of the digestive enzymes, if one is missing or impaired all of the sudden you can’t digest a protein. Look what happened to Steve Jobs with his pancreatic cancer. He is literally starving to death because of this.

I’ll keep posting as things change.

:frowning:

#2

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#3

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#4

Thanks for the post solonjk, it makes sense to me.

Update on my status: I have been fluctuating. I am eating healthy still, no caffeine, mb a glass of red wine once a month. It seems to shake up my system if I’m feeling down or stuck or depressed. I am still working out a lot although I seem to have plateaued. I’m changing up my workout to try and keep from plateauing but am finding it harder now to tear down the muscle and get the positive response in the frank and beans. So my body is stronger and I have more energy (might be an effect of summer). I have been able to masturbate some, sexual activity has been somewhat interesting to me. Although I don’t get erections like pre-propecia ever, it’s always kinda soft. I would have a week or two of lots of activity to a week of less. Moreso interesting was an attraction to females and want to conquer them.

I took a trip to visit my gf (russia) in the end of august. 1 week. I spent a lot of time walking around the city and not sleeping much. we had sex some over the 8 days. She doesn’t like to go long, never more than 5 or 10 min with minimal foreplay. First go was great. The second I started to lose feeling and had only 80% erection. By the last day I felt spent and not really interested at all and lost the erection. Since then (it’s been 10 days) I haven’t been able to get a decent one even with video and turned down advances from another girl I used to think was attractive but quite honestly I couldn’t care less. The interesting thing though is the quantity of ejac seems to be quite a bit when I don’t do anything sexual for a week, it’s the regeneration time that’s so slow. And I am getting pretty normal and large erections while sleeping but as soon as I wake up they disappear. Quick like. I start to feel stressed immediately after waking and this kills them.

Now the frank has shriveled and is causing me some discomfort. I’m just taking some time and trying to rest and work out to recover but this is frustrating. :frowning:

I go through periods of being ok to periods of difficulty getting through the daily tasks. Panic attacks are awful, like my body floods with poison when I think about the wrong thing.

I’m keeping to eating and living healthy now but am seriously concerned about moving to live with this girl now because I don’t know what will happen. I was planning to move in august but keep pushing it back and she’s getting impatient.

Work and working out is all I can do now. I am much improved from when I stopped and I think my body looks much better. But there’s a long way to go…

I haven’t been checking this often because I get obsessed with it but will try every few weeks and will post at least every 3 months.

Oh yeah, no hair loss to speak of yet.

#5

Interesting. I might suggest that you actually let the girl know what is going on with you. I explained it to the two serious girlfriends I have had in this time. I don’t think it necessarily hurts anything and women understand hormones and their importance moreso than men in most cases. I also wonder if the hormonal changes aren’t somehow promoting my two serious relationships. I used to be a serial dater, constantly going out with new girls, never dating the same one for more than a month. Now I don’t have that drive, the exhiliration. I have been in two serious relationships, back to back. I think my hormones have turned me into an older man (like a 50 year old)… more sincere, less likely to pursue random women for the thrill, because the thrill has been removed. I also agree with your sexual patterns. It goes up and down. Frequency of sex definitely hurts impetus.

#6

gcac…i was a real playboy,7 different girls each week…now i m in relation ship,i m honest and i dn t need to go with others girls…so different life style from before…

#7

Haha, me too. I used to be addicted to that honeymoon feeling in the beginning of a relationship then when it subsided I’d move onto the next. Now I don’t get it at all so I too just have been uncharacteristically in long term and boring relationships acting like a 50 year old man. It’s so depressing and such an empty feeling and seemingly futile enterprise to try and find that hormonal feeling again.I’m getting to the point where I don’t care at all

#8

Same here fellas. I’m much more apt to stay with one then go after many.

#9

Exactly the same way for me. It used to be a necessity, now I just hope the feelings there when I really need it. I don’t think I was capable of being in a serious relationship without cheating before, now I also feel like a 50 YO man. It’s not an issue for me. Besides, if I were to cheat I wouldn’t have enough left for her.

This is the same girl that came to visit me after a few weeks off the poison. I couldn’t do much of anything for a week then had a total rebound with a week long erection at varying stages of hardness. I think this still sticks in her mind. I have a great picture with her after the frank finally started working looking at it measuring with her hands and jaw dropped. Definitely averaging less than 80% of that at max times now. I notice especially that even when I’m as hard as I get now the centimeter at the end is still soft, like the cartilage part doesn’t make it to the end. Anyone else have this?

I am going to have a chat with her before I commit to moving. I think it will be difficult but the hope is still there that this regulates back close to pre-fin levels in a couple years, I’ve only been off 15 mo. Worst problem is I need to sleep more than she does, she’s generally up until 1 and then wants sex. And I need to get to sleep by 11 or the process of wearing down really begins.

#10

inLimbo1,

I read your story and I think you summed up what we are all really missing perfectly. We are all at different stages of the recovery, but one thing I have seen in all of the men suffering from this poison is that incredible sensation that you feel when you are want to have sex with a woman is not the same. The inate desire that made you feel that created a sensation to spark the libedo is gone.

There is another sensation that is missing for me that is not sexual but more related to what makes us feel like men. I have always been gym going to the gym 5-6 days a week to lift weights religiously. I used to get a sensation like blood flowing through my body, that made me want to go and get some frustration out and lift weights; I felt like I needed to do it.
I now believe that sensation was free testosterone levels in my blood.

Now that my free T is lower, I don’t feel that need to workout like I used to. It’s a big struggle to motivate myself, but I do it anyway.

What I am hoping is both of these things are derived of the same source, free testosterone. If I can raise the free level, maybe everything gets better.

#11

physicality is definitely something else that this crap stole from us. Like that urge to lift weights I remember there was just a general urge to be physical whether through sports or through knocking around with your buddies. I was an athlete my whole life, varsity football for gods sake, and ever since this stuff I have barley done anything, nor had the urge to. when my friends get aggressive I just wilt like a pansy. i want to feel that testosterone through my veins again, the urge to tackle some body or the juice to power through a decent workout again.

#12

inLimbo1,

I absolutely agree about the sports thing as well. I get together with my friends from high school every year on the same date and we play several sports together. I’m a fraction of the athlete that I was.

However, I am determined to stay positive through this and beat this thing. You also try to stay positive. I do believe things will get better and I am determined to see to that.

I think this forum is a big help. Everyone here is trying something different to get back to who they once were. We are at least able share what works for us and what doesn’t.

#13

Yeah, no sh**. I used to be basically a sore loser in sports… It drove me absolutely nuts to lose in any sport I was competing. I really had to try very hard and pretend it didn’t bother me that much, I would even get into fights with my friends all the time until we cooled down a bit. Now, nothing… It’s mostly like my mind still wants to believe that it’s important to win or play well, but my body doesn’t feel that way at all.

#14

yeah, I miss the desire and good feelings from working out too. Same as I miss the desire for sex. I posted my bloodwork see the link in the signature. Ongoing work will be posted…

#15

martinM,

I remember reading a couple of your posts about having sensative eyes to light and wind and not being mentally sharp.

I also have had the same problems. I have been spending tons of time lately researching and trying to beat this crap. My eye problems had subsided recently then came back this past week. My brain fog was gone, but I was definitely not real mentally sharp.

After hundreds of hours of reading, countless articles I am confident I am getting closer. Maybe it’s only half of the problem. When I read about what high Prolactin level symptoms are I knew I found part of my problem.

I went a step further and found that higher prolactin levels mean your dopamine levels are also lowered. Raising one lowers the other in our bodies.

The Amino Acid L-Tyrosine can be converted in our bodies into Dopamine. I wasn’t sure if my body was too screwed up for it to even work. I went to Vitmain shoppe yesterday and bought a bottle of 500mg tablets. I took one after breakfast yesterday.

I felt I knew something was different. I felt mental clarity within a couple of hours. By noon time, I was sure I felt mentally sharp. The night prior my eyes were bothering me. I had no problems at all. I felt real good. I was going take the pills for a week, just to be sure the L-Tyrosine was what was helping me. Then I got up today took another pill about an hour after breakfast. I feel fantastic mental clarity. My eyes feel great too. I felt I should let you guys know about this.

Now my real hope is that this won’t be temporary. But, I’m very happy because now this proves to me that a large part of our problem is in the Pituitary Gland and Prolactin.

I don’t yet feel any difference in libido or desire, but read the article below and how dopamine effects

Whether it’s sex, eating, taking risks, achieving goals, or drinking water, all increase dopamine, and dopamine turns on your reward circuitry. You can think of dopamine as the “I’ve got to have it” neurochemical, whatever “it” is. It’s the “craving” signal.

The more dopamine you release and the more your reward circuit is activated, the more “reward” you experience. A good example is food. We get a much bigger blast of dopamine eating high-calorie foods than we do low-calorie foods. It’s why we choose chocolate cake over Brussels sprouts. Our reward circuit is programmed so that “calories equal survival.” You’re not actually craving ice cream, or a winning lotto ticket, or even a romp in the sack. You’re craving the dopamine that is released with these activities. Dopamine is your major motivation, not the item or activity.

reuniting.info/science/sex_in_the_brain

I think you should give it a try. Let me know how it works for you. Best 10.00 I ever spent!

#16

I think there is some L-Tyrosene in the Whey Protein mix I use. I tried it some time ago and had no improvement. Is it still working for you?

The only positive reaction I get is if I’m working out and take something immediately after so it gets absorbed into my body.

I just visited an endo yesterday and got new blood tests with very disappointing response from the Dr. I will post in the Blood Test section…

#17

MartinM,

Yes, the tyrosine has been working great. My expectation was not high when I began taking it, but I feel Very mentally sharp. I have had zero issues with my eyes.

I know tyrosine is in cetain products like whey protein and it is also found naturally in Meats as well. However, that source might not be abundent enough for what we need. You said you tried it, did you try it in a pill form? I have been taking 1 500mg tablet after each meal. This total is actually a little less than the max recommended dosage.

#18

Yes, tried in pill form at the max recommended dosage but on empty stomach because it was advised it would absorb better. I’ll check the levels in my protein drink (always mixed with milk) and post.

#19

Boston, my bad I haven’t posted the levels yet. How are things working for you now?

#20

I assume your referring to the tyrosine. I still have not had any of those symptoms come back since taking the tyrosine. I take 1000mg per day.

I just recently got back new blood results. Unfortunately, the results look like my T has gone back to where it was in June. The only positive thing I noticed on the test was my vit D when up a couple of points.
Still no libido at all to speak of. My energy level is still rather low.

I’m actually going to see a new endo dr tomorrow. I saw my primary care dr yesterday and he suggested that I go to see the guy. He’s a new dr, so I was able to get in right away. I wasn’t planning on going to see a new endo dr, but my dr said he is very thorough and open minded as well. I guess all I have to lose is 15$ for a copay and a little time.

I’ll post in my thread how it goes. How are things going for you any better?