10 Years on Fin - paying the penalty now

Member Stories
#1

First of all I would like to thank the forum for the information and support. Here is my story…

I am 46. I took Fin (propecia or proscar cut into 5 or 6 pieces) for about 10 years. I had the usual side effects - low libido, low sex drive, no morning wood, etc. while taking the drug, but it never seemed to bother me because I never thought much about them. I thought it was part of growing old. In fact, I should admit that I was so ignorant that I never knew Fin was the root cause of all this up until 4 or 5 years ago. The main reason being sex was OK and if I should fail once in a while I thought it was normal and had to do with my age.

Almost 10 years passed this way and I was very proud to get to keep my hair… Around August-07, I ran out of my Fin prescription, as I was busy with work and business travels etc, and as such I was off the drug for about a month. My sex drive was back at the end of this time and I felt more like a teen-ager and my wife couldn’t be happier.

After about a month, I got my precription and started taking 0.5mg of Fin once again and boy did my problems started as well. After about 2 months (around Oct-07), I started gettig right testicular pain and right groin pain. I never had these side effects earlier. That is when I panicked and stopped Fin (cold turkey once again). My primary care physician diagnosed my testicular pain due to epidymititis and put me on a 10 day course of antibiotics. In the meantime, my scrotal ultrasound came back normal. And testicular pain went away. I also saw an Urologist who assured me it is perfectly fine to go back on Fin.

So I went back on 0.5mg Fin again (like an idiot… I wish I had see this forum then). Soon after two weeks, my breasts started feeling tender and around same time I started getting Prostatitis symptoms. At first, it was mild sensititivity around penis tip after urinating and slight groin pain. Then symptoms became more intense. I went on a 10 day course of Cipro. My urine tests came back negative for bacteria. My urologist put me on Flomax (0.4mg) which I have been taking ever since the Thanksgiving day! I have been taking Prosta-Q supplements and drinking broccoli water as well. All these seem to be of help to relieve the nasty CP.

I took the recommended blood tests 3 weeks ago. My harmones are out of wack. I have posted results in the Harmone and Blood Tests section.

I am totally devastated and depressed. So much for not knowing that I was infact taking rat poison all these years!

#2

Here is my completed New Member Questionaire:

  1. How did you find this forum? Searching thru Web

  2. What is your current age, height, weight? 46, 5feet 6inches, 145lbs

  3. Do you excercise regularly? If so, what type of excercise? Yes. Treadmill, Elliptical Machine, Light weights

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Vegetarian, raw, light meat – fish and chicken

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

  6. For how long did you take Finasteride (weeks/months/years)? 9years 10 months

  7. How old were you when you started Finasteride? 36

  8. How old were you when you quit? 46

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

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

  11. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? approximately 0.75mg

  12. How long into your use of Finasteride did you notice the onset of side effects? After 10 years. When I stopped and resumed again.

  13. 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
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[X] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfullness
[X] 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
[ ] 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
[X] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[X] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[X] 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? Flomax (0.4mg) per day. Prosta-Q and Broccoli Water. – All for Chronic Prostatitis.

  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)?
    Will do

  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.

See my post (above)

#3

Needless to say that’s when you should have stopped!

Didn’t that say anything to you? That the finasteride was lowering your sex drive and you should be happy that you incidentally stopped? After that did you decide you would rather keep your hair, or that you could prevent this by taking 0.5mg a day?

Anyway, best of luck.

#4

Most people are unaware that Finasteride starts significantly inhibiting DHT at even 0.04mg.

They think that by cutting their pills into 0.5mg or even 0.25mg that is “lowering the dosage”, but they are mistaken – drug inhibits nearly same amount of DHT wether one takes 0.2mg or 5mg.

Too bad Merck never disclosed that one.

#5

Gooing on and off the drug is the worst thing you could do to yourself. My problems started when I took one dutasteride pill per week for the one month.

#6

That’s true; it’s really not about the dose of dutasteride or finasteride. It’s about inhibiting DHT which they can both effectively do at very small dosages, the higher the dose, the less great effect it has on DHT; the biggest suppression is with the initial lowest dose. A higher or lower dose really won’t make much of a difference.

Mew, I don’t see why Merck would want to tell consumers this, as they would want to start cutting up their Propecia pills to save money. Also going off and on the drug can’t be good for you at all. I think the permanent side effects come on when the hormonal system in the body become impaired and unable to readjust to how it was before taking the drugs, obviously this happens to a small minority of people.

If you are just turning nozzles repeatedly by not taking a steady dose, then you’re at a higher risk for sure. It also makes sense that the hormonal system would also be thrown out of whack when coming off finasteride or dutasteride even if there were no noticeable sides while on them. Majkellos, I would like to read your story.

#7

I completely agree. I think I would be relatively OK had I sticked with the drug.

#8

Halo Deano. My story is in the section dedicated to it. Cheers.

#9

NYC you and I were on the drug for approximately the same amount of time and I have to say the symptoms and the results you got from the drug are very similar to mine. The most problematic one for me that we share is the right testicle pain. Why it is the right one someone needs to figure out. The pain when I took it was at the bottom of the testi and it usually lasted a day or two after restarting, then went away until I missed a few doses for a few days, etc. So I have to say there is a definite correlation between the pain that occurs when you stop then start. Also, not to freak you out here, but I don’t know how long ago you quit but for me I was fine for a few weeks then I really started getting pains in the prostate area. If you haven’t had those yet, or only recently quit you may or may not get them. My guess it was to the prostate normalizing in size or something to that effect. Hopefully you’ll get better quickly, I know it took me at least just over 3 months to get consistent erections and libido back, 6 months and the perineum pain lessened to a point to where it was bearable. I am not 8 months removed from the stuff and don’t have many of the problems, just I’m not quite like I was before so I don’t want to post a recovery just yet. Good luck