LTTE's Story

Member Stories
#1
  1. Where are you from (country)?

Canada

  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?)

Google Search

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

23 yrs old, 6 ft 2 inches, 164 lbs

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

Yes heavily. Variety weights, jogging, biking, sports

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

Meat eater

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

MPB

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

Approx 11 months

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

22 yrs old, July 2010

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

23 yrs old, June 2011

  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?

Propecia. Then switch to generic 1 mg by Sandoz

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

1mg. Daily.

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

Immediately prior to stopping (so in June 2011).

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

Erectile dysfunction, loss of libido

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate **variable
[ ] 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
[ ] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks **anxiety but no panic attacks
[x] Depression / Melancholy

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”
[ ] Vision - Acuity Decrease / Blurriness
[x] Increased hair loss **possibly
[ ] 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?

Behavioural psychotherapy with a sex psychologist.

  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)?

Post blood tests are available. I will post below.

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

See #17

#2

Welcome, please post your story.

#3
  1. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

I began using propecia in July 2010 to treat a receding hairline. I responded very well to treatment and re-grew a significant amount of hair within 3 months. I had no side-effects when going on the drug and was functional in a sexual relationship in Oct-Nov 2010.

In February-March 2011: 1) I switched from propecia to 1 mg finasteride by Sandoz 2) I began to reduce my dose of finasteride (with tapering) because I ‘didn’t like the idea’ of taking drugs. Over the course of a couple months I weaned myself down to 0.5mg every few days. I weaned the dose because I thought it would better preserve my hairline.

In April 2011 I noticed increased hair shedding (pillow, hands in shower, etc). I chalked it up to either my adjustment in dosing or telogen effluvium. I re-commenced dosing 1 mg/day (in the morning, 1 hr before breakfast).

May 2011 I was still shedding and began to notice my hairline receding. I also entered a relationship.

June 2011 I was still shedding. The first time my girlfriend and I attempted intercourse I failed to obtain an adequate erection and maintain it. This is the first time I had an experience with ED. The next day I stopped taking finasteride. There was no change in my condition for 8 days. I then ‘recovered’ for a period of 3-5 days before ‘crashing’. Since crashing I have had one period of reasonable functioning (about 4-5 days last week) interspaced with periods of severe ED and loss of libido.

I discovered this website in week 3 off the drug (after my ‘crash’). The similarity between my ‘crash’ and others is what struck me the most. Since then I have been creeping on this site rather excessively. I have been very anxious/depressed during this time. Although when I calm down I can function. My energy level is appropriate, I can remember things/ concentrate etc.

I have come completely clean with the gf. This ordeal has been taxing on our relationship. She like many others I think believes my problems are anxiety based/in my head. But she has been supportive.

I have seen my family doctor and an endocrinologist (who has other PFS patients. He says out of a few one has gotten better). Both doctors make clear that this syndrome has not been ‘proven’. But thankfully neither have dismissed it as a possibility. I have blood work to post (below). Both doctors felt there was nothing out of wack.

I weighed 164lbs in my family doctor’s office exactly 6 weeks ago. Today I was there again and weigh the same. I have not noticed changes in strength, physical appearance, etc. Although I am monitoring vigilantly.

I filed an adverse event report with health Canada. Tomorrow I will call Merck and do the same.

I should mention that I am a medical student, although I cannot be more specific (where/what year). Needless to say I will pursue a career in endocrinology now. I plan on speaking with some of the doctors I know to gauge their awareness and garner their opinions. I also would like to get involved in PFS research. It may not be possible at my center. I need to explore the possibilities.

I have browsed through some of the theories regarding what happened to us. AR silencing and negative autoregulation I find most compelling. I have some thoughts to share regarding these theories and some observations I have made over my short course with PFS. But I will save them for later. For now I am happy this forum exists, although I am sorry to be here with you gentleman. But don’t dismay. People are amazing. Science is evolving at an accelerating pace. There is always hope in tomorrow.

Blood work may be found below.

#4

Relevant Blood Work (Fasting 8am)

Testosterone 15.6 nmol/L (8.4-28.7)
FSH 2 IU/L (2-8)
LH 3 IU/L (3-6)
Total Prolactin 9 ug/L (2-18)
Free Triiodothyronine 5.3 pmol/L (3.5-6.5)
Thyrotropin (Sensitive TSH) 2.47 mIU/L (0.35-5.00)
Glucose Fasting 4.6 mmol/L (3.6-6.9)

#5

Welcome LTTE,

Sorry you have to join us, but we have much more power when we all speak up. I would recommend you join the class suit in Canada. This company should pay for the damage and false representation of their product being safe from persistent side effects, without a long term study to verify that.

#6

LTTE I think if you haven’t already, you should really consider getting involved in the Canadian lawsuit. I know you are a doctor and probably don’t have a high opinion of lawyers and lawsuits (most doctors don’t) but if there ever were legitimate grounds for a lawsuit, the situation we are all in is it!