Used Propecia for 14 years before non-sexual PFS started.

Member Stories
#1

  1. Where are you from (country)? USA

  2. 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?) GOOGLE SEARCH

  3. What is your current age, height, weight? 41 / 6’3 / 240

  4. Do you excercise regularly? If so, what type of excercise? 4 DAYS A WEEK, VARIOUS ALTERNATING CARDIO

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? MUCH BETTER DIET NOW THAT I LEARNED FOR THIS SITE.

  6. Why did you take Finasteride (hair loss, BPH, other)? HAIR LOSS

  7. For how long did you take Finasteride (weeks/months/years)? 14 YEARS

  8. How old were you, and WHEN (date) did you start Finasteride? 1999

  9. How old were you when you quit, and WHEN (date) did you quit? JUNE 15, 2014

  10. How did you quit (cold turkey or taper off)? COLD TURKEY

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

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg A DAY BUT I WAS NEVER 100% COMMITTED. I PROBALY AVERAGED 4 DAYS A WEEK OF TAKING THE PILL

  13. How long into your use of Finasteride did you notice the onset of side effects? 14 YEARS

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    High anxiety, feelings of impending doom, depression, insomnia, muscle twitching (including involuntary breaths and swallowing during sleep,) a slight decrease in semen release volume, itching, tingles running through body, headaches.

Put an X beside all that apply:

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

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

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

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

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? NONE

  2. 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)? NO HORMONE BLOOD TEST TO POST. HOWEVER i DID TEST HI FOR TRIGLYCERIDES AND LIVER FUNCTION (ALT.)

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

Been on propecia for 14 years but never had any sexual side affects which I thought were the only side affects to look for. Today I am 41 years old. In Dec 2013 I started feeling like something unexplainable was wrong with me. I went to doctor and bloodwork revealed high Triglycerides and Liver function (ALT.) However my doctor convinced me I was fine and just needed to lose weight to restore my blood to normal levels. I started exercising and went on using propecia. In May 2014 I suddenly started feeling very high anxiety, feelings of impending doom, depression, insomnia, muscle twitching (including involuntary sudden breaths and involuntary swallowing during sleep,) a slight decrease in semen release volume, body itching, tingles running through body (starting from back of neck, down back, and through legs,) mild headaches, and slightly blurred vision. I thought I was dieing until I found this site and suddenly everything made sense. I quit the drug June 15, 2014. Since I quit I have noticed a slow decrease in the rate of tingles through my body, itching, involuntary swallowing/breaths during sleep. However that is only a decrease. I am still twitching randomly throughout body (mostly during sleep,) still less semen, mild headaches, insomnia, blurred vision, anxiety, depression.

I am remaining positive that time will fix this. I am only a couple of week into quitting the drug. It is very scary. I am exercising, eating well, trying to stay away from alcohol, take vitamin D3 and Omega’s. Anyone else like me? I feel like the only one so far who’s penis is fully functional (with exception of less semen) while my symptoms are everything non-sexual.

Thank you. I will include all of you in my prayers.

#2

I had severe body twitching, tingling (mostly hands) and insomnia when I quit 10 months ago, but luckily they have improved.

If I were you, I would do all I can to prevent the endocrine crash, which seems to be quite common a few weeks after quitting. Too much sex, exercise, fast carbohydrates or other things which raise cortisol levels seem to cause the crash.

Hope you get better, please keep us posted.

#3

Thank you so much for the reply, made me feel a lot better this morning to read that. My hands as well have been twitchy and tingly. How long did it take for you to notice hair loss after you quit?

#4

My biggest scare is Propecia has given me Parkinson’s disease. I have NOT been diagnosed. I quit 8 months ago. The twitching in my hands and forearms was really bad and yes was worse as I slept. The type of twitching I had was my hands would suddenly shake for a moment as I slept and my shoulder, lower back, or leg would jolt. Those decreased a lot over time and the shaking hands during sleep is totally gone. Now I am suddenly getting muscle twitches all over my body day and night, and once in a while I get that “pill rolling twitch” that is known as an early sign of Parkinson’s disease and it really scares me. It’s not constant and only happens for a min or two every couple of weeks. My hands and feet hurt like they have arthritis. My forehead gets greasy from time to time as well. I am terrified. My forearms, wrists, and hands always feel weak. So weak that one time my right hand started shaking just holding a beer. Another time my right hand started shaking while I had it leaning against a laptop, below the keyboard.

Other than that I can deal with the rest, my penis functions just fine. In the beginning I had reduced semen but that appears to be better now, even though my wife has had 2 miscarriages since I quit. I did get eye floaters, that really sucks but I can deal with it. Sometimes my eyes get stabbing pains.

The list of things that has happened to me over the last 8 months seems endless. In the beginning I had a very scary situation with my throat. It would start involuntarily swallowing in my sleep. In addition I would start taking a sudden involuntary deep breath during sleep. The swallowing thing went away and the sudden breaths got much less frequent and sever however once in a while as I sleep the involuntary breath will still happen on a lesser scale. At one point when I dried my left ankle after a shower the towel felt like it was ripping off my skin. At one point I had moments of sudden tingling running through my head, down my spine through my feet, itchy skin, I would get hot flashes down my right leg. Those all got better though. In the last 2 months I developed tinnitus (constant ringing in my left ear) but that now is starting to get less, it comes and goes. In the beginning I could not sleep, I would dream non stop and hear song lyrics playing over and over in my head. One time I woke up from a dream where my head felt like it was exploding. I would have light flashes in my closed eyes as I slept. Those have passed as well. However I still dream all night but I sleep well. I feel like it is much easier these days for my arms to “fall asleep” when I sleep. I’ll wake up and my hand will have partial pins and needles that go away if I reposition of shake it off. I can cause my biceps to twitch if I flex them really hard. After I flex, they will twitch for a couple of min. Another thing that comes and goes is I’ll feel like more should be coming out when I take a crap. I don’t feel constipated, but just feels like there should be more. I have high blood pressure and have gained 30-40 pounds cause I am too depressed to work out anymore. I try very hard to remain positive and every time I get a new side I stay positive that it will pass like most all of them have. I tell myself this is just another thing from PFS and I don’t have a deadly disease. Ultimately I am just terrified that I have early onset of Parkinson’s and that’s what terrifies the most. I keep telling myself in 5 years this will all be in the past.

#5

Your probably not our of the woods on the sexual shit. I think the neurological aspects of PFS are linked to this. Good Luck. Id stop drinking BTW. It lowers hormones more and fucks up your CNS.

#6

Hey Winston I noticed your age, my endo says the body starts to deteriorate quicker over the age of 40. You should keep an eye on your bone health and make sure you’re not at risk to osteoporosis. Here is a link for a supplement I’ve started taking called bone up iherb.com/Jarrow-Formulas-Bo … ules/11934 You might not have osteoporosis right now but if your T is low then your a fairly big risk, so I’d act in advance and take a good calcium formula that works. I’ve had a lot of muscle spasms which seem to have eased off in the past month or so, I’m not sure why. I used to get dozens of spasms on a daily basis, it tended to be worse at night while relaxing.