Fine on Fin/Dut, now I'm a mess. What gives?

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?)
    I can’t remember – stumbled upon the site about a year ago

  3. What is your current age, height, weight?
    29, 5’8", 160

  4. Do you excercise regularly? If so, what type of excercise?
    Yes, run about 4 times a week

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

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

  7. For how long did you take Finasteride (weeks/months/years)?
    Took finasteride for 5 years, dutas for a few months

  8. How old were you, and WHEN (date) did you start Finasteride?
    I was about 23 and started in 2004, tried dutas for a few months starting in 2009

  9. How old were you when you quit, and WHEN (date) did you quit?
    28 when I quit, switched back to fin for a few weeks (from dutas) and then stopped outright in 2009

  10. How did you quit (cold turkey or taper off)?
    Tapered off (very rapidly)

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Generic propecia (finpecia) and avodart (dutasteride)

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    I never noticed side effects of Finasteride when I was on the drug. Even when taking Dutas I felt fine and had full sexual function and was in great shape.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    I experienced no side effects while on the drug.

Put an X beside all that apply:

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

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

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

Misc
[x] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] 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?
    No treatments right now.

  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)?
    I have had two blood tests with Dr. Irwig. The first was done in 2010 a few months after I stopped the drugs cold turkey. I don’t have the results but in his words, my hormone levels looked good except for my DHT being a little low (30 I believe). I had the same blood test done a few weeks ago and my DHT was up to 40.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Perhaps the weirdest aspect of my situation is that I did not experience any noticeable side effects while on Finasteride or Dutasteride, except for ball ache I had while taking the later. It seems my severe erectile dysfunction is evident a year after I stopped taking the drugs.

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

I had been in a committed 9-year relationship the entire time I was on the drug, and ceased the drug after my relationship ended. I had never noticed sexual sides during my relationship years. Around May/June 2010 I started a new relationship and noticed that I was having slight difficulty achieving erection but pinned it on anxiety, which went away and I had no problems. A few months in to the relationship I started having more difficulty achieving and maintaining erection so I procured some generic Cialis and started using. These worked great and I was solid as a rock for many months, often having sex 3-4 times a night on the pill. As the months wore on, I noticed that the Cialis became less potent in that I was not “ready to go” several times in one night like I had been previously.

Fast forward to about a month ago (mid May 2011) and I felt a mild pain forming in my penis, almost like it was shooting through a vein or I had a mild injury. I thought little of it since the Cialis was still working for me, but approximately a week ago the pain became much worse and seemed to also be affecting my testicles. I took a Cialis in hopes of having sex that night but absolutely nothing happened. The next day was more of the same pain and when I arrived home from work in the evening, I took an entire Cialis as my lady friend would be coming over that night. I lied down for a little nap but the pain from my genitals was too severe for me to sleep and spurned an anxiety attack in me as well, causing me to call my girlfriend in tears. The next night, she decided to stay over with me to keep me company and we did end up having sex, though it was quite a feat to get me aroused. The pain in my penis was not as severe but still killed a lot of the pleasure I would normally feel. In the morning we had sex again – same lack of sensation.

I’m completely stumped as to what has happened to me. I never dealt with any red flags while on either drug and merely wanted to take the all natural route and accept baldness. I’ve been reading the member stories obsessively and cannot find anything that aligns with my timeline. I was better on the drugs – maybe I should have stuck with them.

#2

I think you should quickly read that thread on the theory that finasteride (starving prostatic cells of DHT), and even more so its subsequent cessation (brutally reintroducing DHT to an already inflamed prostate), can induce aggravated chronic prostatitis when it had already been present before but asymptomatic and thus unnoticed. Its actually confirmed to be more than a theory for a few (namely blasé and solonjk). And you case sounds exactly like this too. THe good news is there seems to be a (n expensive) cure (read the thread to know about it)

viewtopic.php?t=5076

You should go see an urologist ASAP and talk about your symptoms (especially the testicle and prostate pain, then ED, without ever mentionning finasteride!) and ask him to check for prostatitis with a trans-rectal ultrasound (abdominal ultrasound are close to worthless when checking for prostatitis)

#3

Hmm that’s an interesting read and makes me wonder if I’m somehow dealing with that very same issue. I’m not all too concerned about mentioning the Propecia usage to the urologist since he works for the same association as Dr. Irwig, who is conducting a pretty thorough study on the long term side effects of the drug. He was the one who actually referred me to the urologist.

Thanks for the heads up. If that’s truly my issue then I’ll be happy if the fix is really that simple.

#4

Has anyone else gone through what I’m experiencing, or currently living it? My member story thread is awfully quiet so I can’t tell if I’m an anomaly or what :slight_smile:

#5

Snipped and pasted all the data I have from my blood work. It’s not much to look at but I’m now getting a lot of things tested…

4/9/2011
Testosterone, Serum
Result - 422 ng/dL, Flag Reference Range - 249-836
Dihydrotestosterone
Result - 40 ng/dL, Reference Range - 30-85

7/2/2011
Testosterone, Serum
Result - 82 ng/dL, Flag Reference Range - 249-836
Dihydrotestosterone
Result - 60 ng/dL, Reference Range - 30-85

#6

Yesterday I had a consultation with a urologist and have to say it was a complete waste of time. He didn’t seem to care about my testicular pain and merely gave me a brief prostate exam. He looked at my T numbers and called me “Superman” – what a complete joke. Mind you, this is a doctor within the same university medical practice as Dr. Irwig, who has actually lectured on Propecia to the urology department. They’re all aware of the side effects of the drug and he even had the gall to make a joke, asking if I think he should take the drug because he’s bald.

I left with a prescription for Cipro and Flomax, neither of which I am taking.

#7

Sounds like a moron to me… I keep running into these moronic doctors that keep telling me that 400 level testosterone is normal…Theyre used to seeing that because they see old men im assuming and ones with prostatitis all the time… Thought they don’t know how to treat it… they just sit back and write Rx’s and take your money…It’s a joke… My best advice to you is to wait and see how the other guys seeing the Greek doctor turn out… then you’ll know what to do…

#8

Fucking hell. I wouldn’t know whether to laugh or cry.

#9

Updated my hormone profile.
viewtopic.php?f=4&t=5323

Any thoughts?

#10

Today is 3/16/12 and I have been off finasteride since approx the new year. First it was dizziness, headaches and jelly legs, then I was unable to fall asleep until 3 or 4am for about a week straight, now my brain is fogged over all day, then wake back up to headaches even after 10+ hrs of quality sleep.
Back throbbing and throbbing in the area referred to as the “love handles” has also developed. Constipation and fatigue are constant.

Urologist today gave me a prostate exam and said it was slightly soft, diagnosing me with prostatitis and sending me home with a prescription for Cipro. I’ve come to read that this is a pretty straightforward answer and the medication is procedural. Any thoughts about this?

Thanks.

#11

I’m not sure how you ended up in my thread since you would certainly get more responses from starting a new one. Regardless, the prostatitis diagnosis is a common one by urologists treating PFS sufferers. Hell, I went to see a urologist at one point and he told me everything felt fine with my prostate but STILL sent me out of there with Cipro and Flomax prescriptions.

What I’m getting at is that if you go to a urologist, he’s going to focus on what’s relevant to his training. The best phrase I’ve seen to describe this paradigm of thought is “when you have a hammer, everything looks like a nail.”

I don’t think many people here have felt much relief from Cipro as our problem is not a simple as prostatitis. I’m not saying you shouldn’t try it out, but make sure you are aware of the side effects of that drug as well.

#12

You need to go to an immunolgists or infectious disease doctor. I would only mention that you took finasterside but don’t tell them that is the cause, let them figure it out how to treat you. Just tell them your syptoms and let them run their test.

#13

I might just give that a shot. It seems my case is not entirely the norm as I didn’t develop any sides until after quitting. The strangest thing is that I’ve tested my body’s reaction to finasteride while suffering PFS symptoms and I felt better while on the drug. This thing does some scary shit to our bodies.

#14

Davey - I have a similar situation. No problems at ALL while on the drug for 14 years. Only after I quit did some problems develop.

I am trying to follow your timeline… When exactly did you finally quit finasteride (what month in 2009)? And how soon after did you start having problems?

#15

I would say within three months I began to notice gradually weakening erections. It actually took me a long time (well over a year) to experience a major crash like some guys on here have experienced. I remember it lasting for approximately two weeks and during that time I had terrible anxiety attacks; I was exhausted; and my wang completely shriveled up and lost all sensitivity.

After crashing, I came back around to my baseline again – low libido, low energy, and erectile dysfunction. I’ve tried a lot of things since stopping finasteride and nothing seems to have helped.

There’s also the fact that I have not resumed hair loss since stopping the drug. I think that’s the norm with most of the forum members though.

#16

Thanks Davey

Have you (or have you considered) going back on finasteride, since your problems emerged AFTER you stopped?

This is something I have thought a lot about since about the 6th week since I stopped. I believe that for the guys who had did well long-term and had no issues on the medication but developed side effects after quitting (the anomalies) there is some sort of DHT SHOCK that has occurred. Maybe reintroducing and then a slow tapering process could reverse (or at least STOP) the issues? Or at worse, a low-dose maintenance level of the drug that could maintain normal functioning until we learn more about how to safely come off this damn drug……

By the way – why did you stop the drug in the first place if you weren’t having issues?

#17

Not really possible due to near flat dose response of the drug. See graphs:

physics.upenn.edu/facultyinfo/frankel/papers/propeciafda2/

#18

I have read about some members trying this out with mixed results, as in some say they’re all better and never post again; others say that relief is just temporary. Not all cases are the same and everyone’s body chemistry is different, so unfortunately the only way to know how you will react is to try it out.

I decided to let nature run its course with my scalp. Admittedly I really only cared about the presence of hair on my head when I was kid, and as I got older I figured out that the vast majority of society (women, most importantly), don’t give a shit if you’re bald. Something about taking finasteride for the rest of my life also didn’t sit well with me, so I stopped cold turkey.

Since quitting I’ve had some serious crashes, affecting everything about me from anxiety/depression levels to killing my sex drive and literally shrinking/desensitizing my penis. Why didn’t any of this happen to me while I was on finasteride? Who knows? My sex drive actually increased when I was on the drug. Your abovementioned question hits home because I did experiment on myself about a year after quitting. I took finasteride for a week and almost immediately noticed improvements in my mood, demeanor, and ability to have sex with short breaks in between.

I didn’t intend to stay on the drug, so I quit cold turkey (again) and immediately experienced a week or so of bad penile shrinkage and insensitivity. It wasn’t too long before I got back to my baseline state of just regular old ED and diminished sensitivity. I don’t know if I would have continued to see a recovery while on the drug, but something about using finasteride as a crutch to treat a condition the drug itself may have caused just seems like a bad idea. Others may disagree with my rationale, but I firmly believe modern science can address the root of our condition.

Sorry for churning out my life story. Guys like us, who suffered only following cessation, keep me in amazement and throw my rant switch on.

#19

Hey Davey, I am having almost the same issues - you can check out my story. How are you doing those days? Can you give us some updates?