My horrible experience

Member Stories
#1
  1. How did you find this forum?
    google
  2. What is your current age, height, weight?
    34, 6ft, 185
  3. Do you excercise regularly? If so, what type of excercise?
    5-6 days, weights, cardio
  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    organic healthy, raw
  5. Why did you take Finasteride (hair loss, BPH, other)?
    hair loss
  6. For how long did you take Finasteride (weeks/months/years)?
    9 months
  7. How old were you when you started Finasteride?
    33
  8. How old were you when you quit?
    33
  9. How did you quit (cold turkey or taper off)?
    cold turkey
  10. What type of Finasteride did you use ā€“ Propecia, Proscar, Fincar or other generic?
    proscar
  11. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1mg daily
  12. How long into your use of Finasteride did you notice the onset of side effects?
    9 months
  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
[x] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[x] Watery Ejaculate
[x] Reduced Ejaculate
[x] Inability to Ejaculate / Orgasm
[x] 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
[x] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Depression / Melancholy

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

Misc
[x] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / ā€œPoo Pelletsā€
[ ] Vision - Acuity Decrease / Blurriness
[x] Increased hair loss
[x] Frequent urination
[x] Lowered body temperature

[x] Other (please explain)
Less oily skin
Hollowed out eyes

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    raw juices, brocoli, vitamin d, milk thistle, multi vit, fish oil

  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 ā€œBlood Testsā€ section and link to them in your post)?

  3. Anything not listed in the above questions youā€™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.

Used the drug for 9 months. Noticed a few soft erections, but nothing concerning. At the 9 month mark I noticed weight gain, gained mass in buttocks, thighs, abdomen, emotionally flat, nothing was exciting, felt drained after workouts, experienced erectile disfunction and then quit cold turkey a week later. After a week off the drug my body crashed and I lost ten pounds, muscles atrophied, became constipated, weak urine stream, prostate felt inflammed, abdominal fat, felt more tissue in the pectoral area, sleep apnea, joints popping, exteme anxiety, penis shrunk and rotated, testes shrunk, testes pain, zero libido.

Urologist said prostate was only slightly larger than normal and sent me for bloodwork. She called a few days later and said everything looked fine and referred me to endochrinology for precaution. They havenā€™t sent me the blood results and I havenā€™t got an appointment confirmed yet for endo. Mind you that this is one of top five rated hospitals in the country.

It is now one month since my last pill and I have been getting normal erections although I still have trouble getting them at times, they get half erect and stop. I have no trouble getting erections around my girlfriend and still have normal sex, although it is only once a week due to busy schedules. However, libido still lowered, sleep getting better but still abnormal, testes smaller than before, penis got much larger and more normal but still slightly curved and wrinkled when limp. Hard is pretty normal but feels strange as it softens back up. Larger and floppier.

I have come along way in the last week and half, but am concerned that I wonā€™t recover fully due to my severe side effects after quitting. Has anyone had a similar senario and recovered in a matter of a few months? or am I likely to have these left over effects for an extended period? I hope to get my bloodwork posted and retested to monitor progress.

1 Like
#2

I am approaching my tenth week since my last pill. Iā€™m not sure what to do at this point. I did the broccoli treatment twice for 10 day intervals and had only minimal success. The first time I had a brief three day period of adequate sleep and somewhat normal sex, then I crashed again. Then about two weeks ago on my second stint, I had a one day period of above average libido and good sex with my girlfriend and a normal feeling penis. Earlier this week my testicles ached and got to be almost normal size back for a day. I thought this meant they were finally responding to my higher LH levels I had from my bloodwork viewtopic.php?f=4&t=3592

Now for the past 3 days my penis and testicles have completely shrunk. I have no libido and ED if I try to have sex. I feel like my fatigue is going away. I no longer have the weak feeling I used to, sleep is a little better but hit or miss, my joints arenā€™t aching anymore and my prostate isnā€™t inflammed (constipation gone and can piss normally). However, my muscles are still significantly atrophied, my weight has stabilized at about ten lbs lighter, and I have noticed in the past few days that Iā€™m gaining mass in my lower abs and butt just like I had when I was on the drug (estrogen?).

Iā€™m at a critical point. Do I turn to the hormonal therapy drugs to try to PCT before its too late? I have been taking zinc, vitD, mult vitamin. Do I ramp up on these standard supps and workout more and kinda wait it out? Orā€¦do I try the non pharmaceutical stronger supps i.e. Inhibit-E with a testosterone booster and workout more?

#3

I really think our 5 AR II is not functioning correctly. I think we have something called ā€œandrogen insensitivity syndrome.ā€ Our body is not converint DHT to 3-Adiol G nor is it converting progesterone to allepregenolne, thus is why we have braing fog.

#4

AIS is a defect in androgen receptors, itā€™s a separate condition from 5ar2 deficiency.

Also, 5AR - as far as I know - doesnā€™t convert DHT to 3a-diol-g; itā€™s preferred over DHT testing in determining 5ar2 activity because it is the metabolite of DHT mostly produced in the prostate, where 5ar2 is most present. At least thatā€™s what I took from hereā€¦can be confusing. Nonetheless, comparing the conversion of Progesterone to Allopregnanolone with DHT to 3A-Diol-g doesnā€™t seem to be accurate since it seems to be different enzymes.

#5

Proscarred when you were having the inflamed prostate problems, did you have difficulty beginning a urine stream? How long did it take for the weak urine stream to resolve?

#6

I have had on/off weak urine stream since the crash. I had a month temporary recovery period post anti-biotics for the chronic prostatitis I seem to have and the stream improved a little bit. Then this past weekend I woke up one morning and could barely piss. Prostate inflammed once again. All other symptoms have returned full force. Hormones are a mess. Weak stream is on going. I have had starting urination problems since the crash without improvement. Thinking back, the last three months on the drug I experienced problems starting as well. I think the drug has completely killed my prostate. I remember waking up a few mornings while on the drug and feeling intense pressure and sharp pains the prostate area.

#7

Thatā€™s awful. Iā€™m sorry youā€™ve had to go through this. Iā€™m experiencing the same phenomenon as well.

#8

Mine too experienced sleep apnea after dosed Fin. 2 weeks. (1mg propecia)

and dysuresia (prostate problem)

I stoped 3days ago, and I feel little better, but repeating good between bad condition.

#9

Have you been diagnosed with Sleep Apnea by a doctor? I keep waking up in the night, but I never gave sleep apnea a serious thought - I donā€™t snore etc :cry:

#10

Joe, I think people with sleep apnea wake up in the middle of the night gasping for breath. Is that happening to you?

Proscarred, do you feel as if you canā€™t get everything out when you urinate? Like thereā€™s still urine left in your bladder? That is how I feel. It is scaring me because Iā€™ve already picked up a couple of urinary tract infections because of the stagnant urine. Have you had any acute urinary infections?

#11

No, it feels like it empties ok. Just a lot of dribbling. Still dribbles in my underwear well after Iā€™m done. Its lovely.

#12

As time goes on I do have pockets of feeling about 75 percent, but overall I am declining. Is this common amongst most of the long time suffers here?

At this point my penis is almost completely numb. the numbness starting setting in about 3 months ago and continues to get worse. My libido has continued to almost non existent and is even lower now. My joint pain, athletic ability, recovery time, erectile quality has steadily declined also.

#13

My sides have stablelized somewhat. Basically now its muscle wastage, penis is numb, shrinkage, penis aches at times, increased fat, ED, decreased ejaculate, testicular atrophy, severe depression and severe fatigue.

Some sides have gotten better - no more big dry skin blotches on my face (got aggrevating people asking what I ran into all the time), testicles havnt ached in a while, semen looks more normal although volume is way down, shrinkage has improved but just a little.

Proscarred- maybe you should get to one of the PFS docs? I know you were feeling alot better a little while ago. Maybe they can do something to kick you back there.

#14

In the span of two weeks my body has completely melted away. I am getting severe muscle twitching all over my body. My muscles are wasting like crazy. Rapid loss. It hurts to lift anything. I can feel my arms fatigued as I type or slightly bend my arm. My belly and breasts have gained a fat layer. This all in two weeks. Unreal. I just got a new job and my insurance doesnā€™t kick in till December 1st so I canā€™t get medical assistance. I plan on getting to the pfs doctors soon also. Unbelievable how my body just completely shut down after 9 months.

#15

I have been experiencing crazy body wide muscle twitches. They have come back like during the initial crash. I notice an increase in breast fat as well. Now my nipples are inflamed and very painful. I have no idea how this started. It must be high estrogen or prolactin. Muscle loss continues to increase. Overall, Iā€™ve experienced a gradual decline over the past year. I have had two or three upcycles where I felt like I was trending toward normal. It never stays. Its like the lows keep getting lower. Very sad.

#16

Looks like this is it. I have had some upcycles, most recently after xmas. Iā€™m now worse than Iā€™ve ever been at almost one year since stopping.

Current sides that remain:
Horrible muscle loss, dry red spots on my face, slow beard growth, hollowed out eyes (collagen gone), dry eyes (canā€™t wear my contacts anymore), testicles half the size, lost a ton of hair since stopping???, severe muscle twitches, penis shrank at least 25 percent, varying degrees of numbness, sore inflammed nipples, increased fat in the breasts, thighs, buttocks, lower abs, prostate inflammed again (this had subsided a bit), bloody stool, occassional constipation, no libido, severe dandruff, no oil on the skin, no sweat. I think I have become estrogen dominant. I have got worse progressively over the year.

#17

Sorry to hear that man. Maybe the bloods Crisler ordered will reveal something. At least you have had ā€˜upā€™ cycles which suggests your body can still come back, I just had one big crash. I have identical sides except feminine fat deposits. Well I have got moobs and a pot belly but everywhere else is just wasted away. My jeans are always sliding down cos I have no ass. Itā€™s like fucking AIDS. I was also today thinking about the skin, I have an annoying rash on my face, sometimes lots of flaking. Had this to a lesser extent on fin and it went away when I stopped before without crashing. At least we are on the cusp of much greater awareness and research, if this had happened to me five years earlier I might have topped myself.

#18

This is an interesting caveat to my story that Iā€™ve never shared, but after a year of digesting this disease and hearing all the side effects possible I thought Iā€™d share this.
I got a prescription for Proscar back in February 2009 and initially put the bottle of pills in my medicine cabinet and vowed to never take them unless my hairloss got embarrassingly evident. Being that I have a biology background, I was terrified to take anything that had hormone adjusting ramifications. So, I had a roommate at the time and told him about the medicine and he was gung ho about giving it a try being that he was also going bald. So I thought great, he can try it and tell me about his experience almost like a guinea pig. My RX was covered by insurance anyway so it was no real loss to me.
Well after two months of use he said everything was normal and his hair looked somewhat better. So, I took the plunge. June 2009. Initially I felt very androgenic, sexual, and muscular (up regulation). Also, I noticed that I had the biggest orgasm one time shortly after starting. I had one that flew across the room. This had never happened before. Although I felt good, I thought this was bizarre and wanted to stop, but at that time I was experiencing the initial ā€˜sheddingā€™ phase a few weeks after starting. Some websites etc. recommended that you stay on the drug past this stage to see if it works. I didnā€™t want to permanently lose the hair that shed so I decided to stay on it. It was almost like I was trapped at this point.
About two months in I noticed a sharp pain in the prostate one morning and also strange feeling when having an erection, like I wasnā€™t in control of it, but this lasted for only a minute. These were isolated incidents and I read that your body has to get used to the drug so I wasnā€™t that concerned. Meanwhile my roommate was totally fine although he did report to now have premature ejaculation problems. I didnā€™t think that was much to be concerned about either.
Fast forward to sixth months in around Christmas time, I notice slight shrinkage and loose skin around the penis, some fat gain, and really strange gas and bloating problems (estrogen). Also, that libido was strange. It was there, but not like it used to be. I would forget about it at times where I would always be thinking about it in the past.
So I discussed all this with my roommate and started doing research. He reported a little depression (but blamed it on the weather) and a bit of testicular shrinkage, but really thought it was all psychological. Meanwhile, I found this forum, but failed to find the facts page. I thought this was a bunch of hypochondriacs with symptoms while ON the drug or shortly after stopping. I never found ANYTHING that even mentioned the word permanent. So I kept going back to the merck website and pinning my hopes on their information and studies etc.
Finally, about two months later after continuing to spiral downward, I felt another jolting pain in the prostate one morning almost like it was having a heart attack. Then after a vacation filled with drinking and my birthday filled with complimentary shots, I felt completely sick. I was impotent for the first time, fatigued etc. I stopped taking the medication and two weeks later I crashed. I had the bent penis and everything. Very violent crash.
Ironically, my roommate kept taking the medication even after my warning and showing him the forum facts etc. After seeing me twenty pounds lighter and completely gaunt he finally quit and recovered just fine. I think it is very strange how my roommate was a completely healthy guy like myself and did feel the side effects. I think most people get the side effects but because they are so mild and not detectable unless you are paying close attention they go undocumented. I bet 75 percent of the people who take this drug feel some type of side effect. You got to give credit to merck for knowing that they can get away with this because of the ā€˜dodgyā€™ ness of it. The marketing also completely steers the potential users away from the facts. It is just too cruel that some of us had to have our ā€˜switchesā€™ flipped like this. There had to be a lot of things that went a certain way for me to end up like this. Itā€™s pretty amazing.

#19

As you know, I had a pretty similar story around the time I quit. Merck knew full well they could get away with this: ED and loss of libido is difficult to prove unlike other drugs which have been busted for serioous physical effects. Plus, the drug was first approved before Viagra was even out, in the era where most ED was still ruled out as psychological. Add the fact that male hormones is still something of a grey area, and even less understood then, and youā€™ll see why they pushed ahead with a drug that has grossed them billions until they finally look like getting caught out - so they can afford to take a hit if it comes to that. No doubt they scared away a few medical professionals wanting to investigate the drugā€™s effects more closely in the interim.

Having said that, I do still feel to blame for not investigating this stuff before ingesting it. This website wasnā€™t around when I first took it, although guys like JN were already complaining of permanent problems elsewhere, and after that I had better things to do than read hair loss forums etc as the drug was working. Should have at least googled the drug at some point though.

#20

I thought I would update my case now being 15 months off the drug. I have had about six weeks of pretty steady improvement following a focus on treating the liver. Unfortunately I had to go to Europe for three weeks for business and found it very hard to manage my diet and alcohol intake while away. Then I returned home and had a week off of work over the forth of July week/weekend. Of course it has been a challenge staying away from beer, bbq, etc. etc.

So after this improvement, I have now taken a moderate step backward. I hope to start a healthier lifestyle and get back on the liver focused herbs. At this point I will list the things that have improved as well as things that are still lingering or getting worse.

Improvement:
Sleep. I can now pretty much get a decent nights sleep. I notice that more often than not, I dream a lot. I believe this is because my body fails to get into deep sleep. The fact that I dream a lot may mean that Iā€™m in lighter sleep cycle.

Mental. I have noticed a huge improvement here over the last six months. I can think clearly at work, carry on conversation, not slur speech, focus, etc. etc.

Lingering:
Libido is still dragging. I never feel horny and have to force myself to masturbate. However, if I am with my girlfriend I have really no issue performing. However, if I were to ever have an encounter outside my relationship, I seriously doubt Iā€™d be able to perform adequately.

ED. Very sporadic. Sometimes I can get it up without too much problem, other times it is a challenge.

Fatigue: I feel drained after half the day whenever I do anything physical. After a nap I can usually get going again by early evening.

Facial structure loss: Eyes still hollowed out. Jaw less broad. Less collagen on the forehead and other areas.

Genital numbness: this is still a problem. A bit sporadic but always there.

Genital shrinkage: Testicles still not the same size. I donā€™t think they will ever come back. Penis varies, but still smaller than before.

Worse:
Muscle loss. This was stabilizing, however, I canā€™t put on muscle for the life of me. I work out at the gym and it does nothing. Muscles still feel soft. It is a bit of a challenge holding things or elevating objects etc.

Gyno: I have noticed an uptick in fat around the nipple and outside of the breasts. Even after doing a lot of chest exercises.

Pretty much the same as everyone else. Iā€™m sure there is other areas that I am not mentioning that are still giving me problems, but Iā€™ve highlighted most of the major concerns.

The biggest thing for me is the diet and alcohol. I really see a marked difference in my condition when I manage my diet and liver. For me its trying to balance living my life and having fun verses sacrificing for my disease.

I am delighted to see all the great developments starting to happen for us. Hopefully some relief and justice is on the horizon.