New member, here is my story

Member Stories
#1

I just signed up for this forum and look forward to sharing what I know with everyone here to find a solution to our problems.

I first took propecia in my early 20s when i started to lose my hair. The doctor who prescribed it for me told me that only 2% of men have problems and those two percent went back to normal when they quit the drug. Thinking I had nothing to lose, I filled the prescription right away and began taking the medication.

Almost immediately I knew something was wrong. I lost interest in sex, no longer noticed attractive women and found it very difficult to get aroused. I stayed on the drug anyway because I really believed I would return to normal if I stopped.

Eventually the symptoms became too much to deal with after about a year and I stopped taking the drug for 2 years. In those 2 years I never recovered and I began to think it might be because of other things. I thought there was no way propecia could be causing the continued sexual dysfunction because I was no longer taking it. I spent years trying to get off drugs I was taking for seizures, hoping that would work and, having mistakenly ruled out the propecia as a problem I began taking it again until this summer.

Now I am off all medications and am continuing to suffer side effects and I am even learning about some new ones. So far here are all the things wrong:

I have very flat moods. I’m not depressed, not happy, not sad, just stuck in the middle
I am able to have orgasms but they are pleasure-free. I believe the term for this is sexual anhedonia
I have no dreams when I sleep
There is a complete absence of sexual fantasies for me
It is hard to feel or express love
I have a hard time laughing. When I am at comedy clubs I am the only one not laughing. I get the jokes, they just don’t strike me as being funny.
A lot of hobbies and things that used to be interesting to me are no longer interesting.

I am now 33 years old and have spent the best years of my life crippled by this drug. I don’t know if there are many people who have been crushed for a decade who have dug themselves out of this mess. I want to be able to feel alive again, I don’t even care about my hair anymore.

#2

I forgot to add that I also have severe memory issues. It’s hard for me to concentrate or think clearly and my memory is definitely impaired. I used to be an amazing writer and be able to infuse a tremendous amount of emotion into my writing. Now I just feel empty and cold and am often at a loss of words when I try to express myself.

#3

Yes many can relate to what you wrote, self included. Suggest you copy/paste Symptoms Template (at top of this subforum) into your post, review FAQ at top of site, and get bloodwork per list therein.

The mental issues/emotional dulling/memory impairment is quite common… considering the drug blocks neurosteroid production in the brain however, it all falls into place.

#4

Yeah… you indeed belong in our community. Pleased to be able to potentially help someone else.

If it is at all a consolation…I believe this matter has been explained significantly by this community, and that a restoration is not only possible but probable. I and a few others have regained plenty of the things we have lost from believing Propecia was safe through simmilar treatments, so this is very positive. Give our Studies section a comb-thru and take care of your body. You will also be interested in reading my recovery thread.

Good luck. You’ll get better; it just takes effort.

#5

COPY AND PASTE THE FOLLOWING INTO YOUR OWN POST, then answer the questions.

  1. Where are you from (country)?

USA

  1. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

Found this place on google

  1. What is your current age, height, weight?

I am 33 years old, 6’1", 160 lbs

  1. Do you excercise regularly? If so, what type of excercise?

Light cardio, some weights, and also plenty of walking.

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

The biggest story of my “illness” from this drug is that I have no appetite. When I do eat, I try to eat reasonably healthy, very little fried food and junk food. I would say I eat the typical American diet.

  1. Why did you take Finasteride (hair loss, BPH, other)?

Hair loss.

  1. For how long did you take Finasteride (weeks/months/years)?

On and off for a period of 10 years.

  1. How old were you, and WHEN (date) did you start Finasteride?

22 years old.

  1. How old were you when you quit, and WHEN (date) did you quit?

32 years old, I quit in the summer of 2008.

  1. How did you quit (cold turkey or taper off)?

Cold turkey.

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Proscar, and I would break it up into 4 pieces and save money that way.

  1. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

I’m not sure how many mg a standard proscar tablet is? Whatever it is divided by 4 was my daily dose.

  1. How long into your use of Finasteride did you notice the onset of side effects?

I knew there was something wrong almost immediately, but I was also assured by my doctors the side effects would go away if I stopped.

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] Watery Ejaculate
[X] Reduced Ejaculate
[X] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ X] Other (please explain)

EDIT: I am adding some side effects I remembered after this post
-Chest pain from drinking almost anything except water. This is very painful and can last 30 minutes
-A burning sensation on the roof of my mouth when eating certain foods. It comes and goes randomly so it’s hard to figure out what ingredients are doing this to me
-My body won’t produce ear wax anymore so my ears are dry and itchy all the time.
-I have been getting brutal migraine headaches from time to time.
-I always feel sluggish and tired and have little energy

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

I’ve been trying maca, which seems to help a little bit.

  1. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?

All my bloodwork has always tested out normal

BLOOD TESTS: propeciahelp.com/forum/viewtopic.php?t=2283

#6

Here is something interesting that may help the forum. I am also suffering from colitis, which is a nasty autoimmune disease that causes intestinal bleeding and lots of pain. I found a doctor who prescribed me Low Dose Naltrexone to help put it in remission. And even though this is an unapproved treatment for colitis, it worked great for me and put me in remission.

Some other things happened to me as well that I was not expecting. My memory improved, my sensation improved and my penis started peeling like I had a sunburn or something. With each layer that would peel off, sensation was twice as good underneath. The peeling took place the entire first week I was on the medication. The first few weeks on naltrexone I felt so much better, I thought I had cured the problem. Then little by little the medication lost its effectiveness and things went back to “normal” which is the sad state I am in.

Anyway, I feel like I may have discovered a piece of the puzzle for helping us recover. I think part of the problem we are having is endorphin related and naltrexone in a 4.5 mg dose actually stimulates the production of endorphins. I like the medication because it makes me calmer and gives me a lot less anxiety. You guys might want to read up on it, it’s fascinating stuff.
lowdosenaltrexone.org/

1 Like
#7

That’s interesting that naltrexone had some positive effects related to post-Finasteride issues, because it’s one of the treatments Dr Shippen prescribes (read the user “voice” member story).

#8

I guess it’s as good a time as any for an update. I went to a shrink who specializes in sexual dysfunction and he tried to help me to the best of his ability, but everything he prescribed either made me worse or caused my colitis to flare up. The medications made my intestinal bleeding so out of control I eventually wound up in the hospital for a week.

When I was in the hospital, they put me on prednisone to control the colitis. It worked for that, but caused all kinds of other problems. My face broke out like a loaded pizza and my sex drive went to zero. And when I say zero, I mean zero. No functioning whatsoever! On any level! My face swelled up and my joints began to hurt, and I experienced water retention. Prednisone is a horrible drug! I started at 40 mg, then every Thursday I dropped 5mg. It took 8 weeks to come off this crap and I feel like I’m really screwed now. I’ve been off since Thursday, but I’m a swollen achy mess and I have crazy anxiety and mood swings. I can’t wait until it’s out of my system.

So right now I am on no more medications, and I think I’m done with the shrink. I don’t plan on going back there because it’s nothing but trouble. This summer will mark the one year mark since quitting and things are a complete mess with no sign of improvement. I don’t know how you guys manage to live with these symptoms. When I am at 25% functioning, I can sort of function well enough to not be angry, but when things are bad, it is so hard not to panic and get depressed.

And the worst part is that we are all on our own. No doctor wants to help or knows how. There might be a cure down the road, but there might not be. And who can bear the thought of living like this forever?

#9

Well folks it’s time for an another update. I decided to get some help from either Crisler or Shippen and got on the phone with both offices. Shippen’s office could get me in on August 5th. They would need me to send a letter explaining my symptoms with a self addressed envelope so he could send labwork. I would also need to include a 150 dollar deposit for the appointment.

Crisler’s office could get me in almost immediately, so I decided to see him instead. His office wanted me to pay in advance, but was less effort needed on my part other than flying over there. All I had to do was print and fill out the Medical History and the Consent/Authorization to Treat forms from his website and then forward them to the office. I quickly filled out the forms and faxed them. I decided to take their soonest appointment and buy my plan ticket. The best way is to go to the airport in lansing, but the prices were out of control to fly in there from south Florida. I decided to land in detroit, rent a cheap car for 40 bucks and drive to lansing, which is about 80 miles or so. This way I could save a lot of money on my tickets. The hotel I booked was the Staybridge Suites Lansing Okemos to spend the night.

The plane flight from south Florida was quick and easy. When the plane was landing, I could see Michigan’s highways and could not spot a single foreign car. The detroit airport was huge! I was walking for what seemed like an eternity to get to the shuttle bus that took me to the rental car place. Once I was at the hertz place, I told the lady to get me out of the Hyundai Accent I had reserved and into something American. There was no way I was going to driving around michigan in a foreign car! For a couple of bucks extra, I got a Ford Focus with sirius satellite radio. I plugged my GPS in and my phone in the car to charge up and off I went!

Michigan is miles and miles of absolutely nothing once you get out of detroit. Good thing the car I rented was averaging over 40 mpg so I wouldn’t have to look for gas stations until I got back. If any of you guys make this trip, forget about finding things to do in the town to kill time because there is nothing in lansing to do. Absolutely nothing. I had magazines, my laptop, and a hotel with internet to keep me busy, but that was it! When I woke up in the morning after staying in the hotel, I made the mistake of checking out early and I was bored out of my mind looking for a mall to walk around in before my 1:00 appointment. I couldn’t find anything! I wound up sitting in the car in a parking lot calling family to kill time until the appointment. Then I drove to Crisler’s office an hour early, figuring at least his office would probably have some good magazines to read while I waited.

A nurse came in to take my vitals and weigh me and I went back to the waiting room to wait for Crisler to take me. When he took me into his office, we talked about the town and the economic conditions and then he started looking at all the pages of labwork that I brought with me from other doctors. He said i have one of the biggest spreads he has ever seen on the labwork. When I told him I took propecia he said he was very sorry to hear that. He said he has a lot of patients that come to him that took the medication. He said it’s always a similar story, just a different variation on the labwork. My situation is a weird situation because I have fantastic testosterone levels and very poor free testosterone. Thyroid is good. Low DHEA levels. He is going to have me do a 24 hour urine test, because he needs some numbers he can count on before he can treat me.

So that’s basically where we left things. I’m waiting for the urine test to show up in the mail and then we’ll go from there. It takes about 10 days to get results back after I complete the test. On my way out, the lady that helped me book my appointment told me 95% of people that see Dr. Crisler come from out of state, so I feel like I’m in good hands. He must be excellent if almost all his patients are traveling to see him. I am going to wait a bit and see how my treatment works out before telling everyone to get on a plane and go see him, but so far I have a good feeling about everything. Most doctors tell you the problems are all in your head, at least we have some doctors here that will listen to you and try to help you instead of telling you that you are crazy. The second reason I am optimistic is that he seemed pretty confident he could help me.

I’ll be updating this thread as my treatment progresses. Hopefully I’ll have some better news in the next few months!

#10

I just completed the urine test and mailed it today. It’s a 24 hour test where you pee in a jug and then fill a tube from the contents of the jug. The test tube gets frozen in your freezer and overnighted to a lab. I’ll be out of the country from the 2nd of July until the 22nd, so there won’t be any chance to start any medication or treatment for a few weeks. When I hear from the lab and start my treatment, I’ll keep everyone posted on what happens.

#11

I’m back in the USA and ready to continue my treatment. My results for the 24 hour urine test are in and I’m ready to discuss the results with the doctor. As soon as I finish that conversation I’ll know what kind of treatment I’ll be starting. Stay tuned for another update real soon.

I know there are a lot of people at the edge of their seats to see what happens next because they are trying to figure out if it is worth flying in to see a doc who acknowledges that finasteride can cause problems. I’ll do my best to keep everyone in the loop as things progress. I could very well be one of the worst cases ever, so if I do recover, I think just about anyone could.

#12

I wish I had some really good news to report like that I had the magic bullet to totally cure this mess once and for all, but in real life things are never that quick and easy.

Today I went over my lab results with Dr Crisler and, despite me feeling horrible, most of my lab work looked decent. Testosterone levels were normal and the only thing that really stood out was very low DHEA levels. Crisler would like to work with another doctor I have on seeing if I have an yeast infection. I’m not sure what exactly was in my 24 hour urine test that had him wondering about that, but I’ll make that my next task.

In the meantime, Crisler’s office is going to be sending me some DHEA supplements to take. Crisler said the DHEA is very important for helping me feel better.

I’ll keep you guys updated on how I am doing. It’s going to be a slow journey and take a long time but the fact that my hormone profile was more normal than it was just six months ago is a good sign that my body is healing. As soon as I have a copy of the labs I’ll post it up.

#13

I got my DHEA pills and started taking them on Monday. Even though it’s only been 24 hours I already feel some change. Libido is still horrendous, and maybe anxiety is a little worse, but there is good news too. Usually I can’t be bothered to go to the gym because I feel like there is no payoff. I go, but I don’t get the “natural high” that I used to get when I was in high school following a workout. It’s probably the same reason why I don’t get a euphoric rush from anything I do.

Anyway, last night I felt restless and I felt like I had to do something. I went to the gym and gave it my all and had a pretty good workout. This morning I woke up at 5AM and felt very restless. Again, I had this feeling like I couldn’t just sit there. I got dressed, went to the gym, and did a full mile on the treadmill.

This kind of behavior is completely out of character for me. Usually I am a sleep until noon kind of guy. I think the new found energy is coming from the DHEA, but it’s too soon to be sure.

#14

be carefull using dhea cause it could drop your endogenous androgens beena precursor .

#15

Yeah, there are some factors as you’re supplementing your own production. In cases of adrenal fatigue it can be helpful. I would only use it if it was proven it were deficient and therefore helpful. It can also cause increase in estrogen.

#16

GUYS, isn’t he seeing one of the leading experts in the field!!
Jeeze… so many think they are doctors on this site now! Let the guy get treated!

#17

Ah. Missed the part where he said it was the doc’s treatment.

#18

It’s a DHEA 25 MG troche. I’m instructed to dissolve one troche under the tongue twice daily. Too soon to say if it’s working or not. I’ll keep everyone posted.

#19

I hope the frequent posting isn’t getting on anyone’s nerves. A lot of things are happening to me and I was thinking about waiting to post and seeing if it’s a fluke or I’m genuinely recovering. I can’t wait though, because I’m too excited.

So far are the changes I’ve been noticing:

Like I mentioned before, more energy and motivation to do things instead of just sitting around doing nothing. When I go to the gym, I feel a euphoric sense of accomplishment instead of just feeling nauseous and dizzy.

In my foreign language classes I notice that I am much better able to concentrate and I am also much much better at pronunciation. As recently as last week I could not do a rolling R to save my life, now it’s like my brain and my mind are one!

Chest pains are gone! All that pain when I drink anything but water is gone. No more 30 minute episodes where I feel all this pressure under my sternum.

Runny nose when I eat problem is gone! I used to be embarrassed to eat in front of people because of a runny nose I would get while I eat.

Conversation seems more fluid and easy, I don’t need to think so hard to speak

I am more focused and feel like my memory is improving. I am aware of dates and times and much less dependent on electronic organizers.

Libido has a long way to go, but for at least 25% of the last couple of days I have felt really close to normal. For me that’s a massive improvement.

I have my emotions back. I’m no longer stuck in that world of fake contentment where I was unable to express feelings. I feel much more human and less like a robot.

If this keeps up, I’ll have to start a thread in the recovery section. I don’t want to get too ahead of myself because there have been times where I thought I was getting better and it turned out I got my hopes up for no reason, but so far so good. :smiley:

#20

that is good news this treatment is working for you
adrenal profile is something i myself should look into , i put it off since my cortisol blood readings were normal a year or so back

can you offer an opinion as to why the propecia may have affected your adrenal gland function?