My Journey Through Hell

Member Stories
#1

  1. Where are you from: USA

  2. How did you find this forum: Google search – if so, what search terms? Propecia side effects.

  3. What is your current age: 51 height 5’9" weight: 192

  4. Do you exercise regularly? Yes, weights 4-5 days a week.

  5. What type of diet do you eat: Meat, good carbs and veggies.

  6. Why did you take Finasteride: Hair loss

  7. For how long did you take Finasteride 19 months

  8. How old were you, 49 and WHEN May of 2010 when I started Finasteride.

  9. How old were you when you quit, 50 quit in December of 2011.

  10. How did you quit: cold turkey

  11. What type of Finasteride did you use – Proscar

  12. What dose did you take: 2.5 mg/day.

  13. How long into your use of Finasteride did you notice the onset of side effects? 16 months

  14. 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
[ ] Watery Ejaculate
[X ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] 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
[ ] Extreme Anxiety / 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
[X ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[X ] Dry / Dark Circles under eyes

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

  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)? Not Yet

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

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

My Journey Through Hell…

Quick Background:

51 year old Caucasian, WAS in great health my whole life, I work out 4-6 days a week lifting weights. Not a body-builder but good muscle mass for my age. I eat healthy 70% of the time, enjoy my cold beers on the weekends, great job, great income and great home and family life. UNTIL SOMETHING MESSED ME UP BAD!

My Story timeline: (when you read this keep in mind I knew nothing about the Propecia side effects until I read the on-line Yahoo article on 7.12.12 and fell off my chair in shock at work) http://news.yahoo.com/photos/men-propecias-sexual-side-effects-may-long-lasting-photo-215732367--abc-news-wellness.html

In 2007 I started slowing down in the weight room and my energy level dropped significantly.

Was tested for low T and it came back 240. 2 months later it was 220.

Went on Androgel, 2 packets a day in 2007 and brought my T up to 880 and I was feeling much better, lifting more, leaning out and my sex drive was fantastic.

In May of 2010 I noticed more hair falling out than usual, went to the Urologist and ask for Propecia. He told me at the time are you sure? Because its like putting one foot on the accelerator and one on the gas…I made the worst choice in my life and said sure…I cant be part of the 2% affected as stated. Started with 2.5mg of Proscar that May.

16 months later I noticed my erections were not hard and difficult to attain, also noticed increased fatigue.

Went to my GP to complain about my fatigue and she said to quit drinking and I would be fine. I quit drinking and my symptoms got worse, fired her.

I quit taking Proscar in December of 2011 because I didn’t know what was happening to my body.

I was then only able to obtain an erection by way of injecting my penis with Tri-Mix, it gave me a great erection but no desire to use it, but needed to keep the wife happy.

Since November of 2011 I cannot get hard, I feel like I have narcolepsy, I take 3-5 naps a day, I have constant heavy “Brain Fog”, especially in the morning, I don’t enjoy my beer buzz anymore and I have no motivation to do anything. I cant believe I have held onto my job as my memory has been failing and my emails at work looks like I have regressed to the 7th grade due to my mental capacity.

Started seeing a great new GP in February of 2011 to investigate my symptoms and here is the list of all the testing I have been through in the last 17 months:

2 different sleep studies at overnight labs, both Negative.
Went on night oxygen therapy, no improvement.
Bought my own CPAP machine out of desperation, no improvement.
Full heart work up, EKG, cardio stress echo, Negative
Full abdomen work-up including kidneys, liver and pancreas. A 24 hour urine protein test, CT Scan with contrast, all Negative
Due to my dizziness I saw my ENT doctor, had a CT of the brain, Negative
Went to pulmonary specialist, X-rays of lung etc. All Negative
During this time period I have had over 20 blood draws, all Negative
Saw an infectious disease Dr., tested for many unusual viruses including 3 types of Lyme diseases, all Negative
Went to my dermatologist and checked for skin cancer, Negative.
As a bonus to all this, I have severe diarrhea the last 6 months, more blood tests, stool testing and a colonoscopy with tissue sampling for Crohn’s disease and colitis. All Negative.
All the while I have been keeping my T levels up to no avail, I even raised them to 1,500 and it had no affect whatsoever. WTF, how could that be?
My GP put me on Viibryd (SSRi) to increase my energy 5 months ago, very little effect, just added to the brain fog. I am in the process of coming of this drug now.

I had to go on Ritalin so I can stay awake and not loose my job, works pretty good except now I have a more active brain fog.

The only part of the day I feel halfway descent is in the late afternoon. I used to love to read but cant anymore due to falling asleep and concentration.

Sometimes I drink just to put me out of my misery, the funny part is I feel no better or worse the next day when I do drink the night before.

I have no sex drive no matter how hot the woman is, I don’t enjoy porn anymore, I don’t sleep worth a damn and I feel like my balls have been cut off.

If I feel like this in 10 years, I’m checking out of life…Period!

Then I read the Yahoo article last Thursday and said holy shit, these are all my symptoms! Now I’m really screwed! http://news.yahoo.com/photos/men-propecias-sexual-side-effects-may-long-lasting-photo-215732367--abc-news-wellness.html

I have an appointment with my urologist upcoming and hope to get him to sign off on the recommended blood work on this site and to get referred to an expert endocrinologist, if there is one one in the bay area are who specializes in Male Hormones.

I will keep you posted.

#2

This is one of the major issues with this syndrome. The issue is explained by Dr. Crisler and Dr. Jacobs, here:

[youtube]http://www.youtube.com/watch?v=BEGCTMtlgoc[/youtube]

Dr. Crisler’s thoughts:
viewtopic.php?f=22&t=2551

Dr. Jacobs’ thoughts:
blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/06/a-proposed-mechanism-for-prolonged-sexual-side-effects-from-finasteride.html
blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/06/the-plot-thickens-along-with-the-hair-when-you-mess-with-dihydrotestosterone.html
blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/04/a-neuroendocrine-approach-to-finasteride-side-effects-in-men.html

#3

you wrote

[i]In 2007 I started slowing down in the weight room and my energy level dropped significantly.

Was tested for low T and it came back 240. 2 months later it was 220.
[/i]

so why your T dropped and you had to go on Androgel?

#4

I just never pursued it then, wish I would have. It went from 400, then 310 then dropped below 300 after several years, I just thought it was age related.

#5

your T was dropping any way. I mean it was dropping even before starting fin.

#6

Yes, but even with low T back then I felt 10 times better than I do today.

#7

how would you explain this? could you compare how you felt then and how you feel now. It will help better understand these sides.

#8

When I previously had lowering Test scores, I was getting tired in the day but not the extreme fatigue that I am battling now, I am now considered narcoleptic by one of the recent doctors I just saw.

Although my sex drive was slowing down then, I could still get aroused looking at a woman or good porn, now I cannot even get erect if you put Salma Hayek (my fantasy woman) in front of me nude, or even have the desire for her.

I also did not have any of the brain fog or diminished mental processing back then that I do now.

I really hope that it is something else besides Propecia, then maybe it could be fixed.

#9

So I saw my urologist this last Friday and had him read my post I did here and I explained everything about my health.

He patiently listened to me and I think he believes me. I printed some literature from this board and he thanked me and I do believe he will read up on it.
However he has no idea what to do with me. He did say that most of his patients are elderly and he prescribes finastride for prostrate problems, not hair loss.

He did sign off on the short list blood test that I brought from this board, so I will be posting those results when I receive them.

I have been thinking of a virtual consultation with Dr. John Crisler, I just cant believe that living here in the SF Bay Area that there is not a specialist that can address this in some way.

#10

have you used steroids?

#11

Never touched them.
Lots of supplements and protein shakes, No-Explode etc.

#12

Exactly, hypogonadism - which used to be what everyone thought we had - is a walk in the park compared to PFS which is full blown androgen deprivation.

The sick thing about the drug, even before you get to another level of struggle if you crash, is that the sides mimic low T: ed, low libido, some tiredness and slower thinking among other things. How the fuck did no one in the medical community point this out before it hit the market or until now?

#13

Because we’re apparently in the minority.

#14

I have to believe that there are so many more men suffering from this than anyone ever imagined.

If this is what happened to me, it took me 2 years to make the connection.

#15

I agree, the number must be in millions after taking SP or fin. Many people don’t know and idiot doctor downplay every thing. My dumb doctor still does not believe me and he has written a long note against me in the file. He advised other doctors as well and now that clinic has declined to see me. I am going to an other group of clinics.

#16

SPS, have you filed a report to Health Canada about your experience with SP? Maybe someday, they might be actually make the connection between 5AR inhibitors and persistent sexual dysfunction.

#17

yes already. I have also sent them my correspondence with Danish health Ministry. But looks like, like my doctor they have no interest. Honestly I am very disappointed with Canadian health system. Danish Ministry was very supportive and helpful. they responded to my every email and finally told me they were ready to share their research about SP with Canadian health Department if they contacted them. I showed this all to doctors and begged them to contact health Canada / Danish ministry but each time they turned a deaf ear. Money is every thing to them. They don’t want to spend more then 2 minutes on one patient.

#18

re: [i]"I have to believe that there are so many more men suffering from this than anyone ever imagined.

If this is what happened to me, it took me 2 years to make the connection."[/i]

MDG I stopped Finasteride in July 2009 after taking it 9 months for hair loss. I was also heavy into body building for close to 10 years.

MDG did you get your blood test results? I am having a full panel done in a couple weeks. It sucks to have to pay so much $$ for these tests when the docs say there is no known treatment and I likely can’t even sue, and have no health coverage or money due to my PFS problems.

After quitting Finasteride, It took me 3 years to make the connection including to my completely debilitating brain fog.

In those 3 years my life completely unraveled. Marriage ended, career as software engineer fell apart, depression, anxiety, suicidal thoughts, bankruptcy, sexual identity crisis, gender identity crisis.

I ended up lost, isolated and depressed most of 2011. In December 2011 I pulled myself up and began transgender counseling, feeling that was my issue. Joined a transgender support group in early 2012. Upon making an appt w/ a transgender specialist MD in May 2012, I learned that the 2 most popular drugs given for M2F Transgender hormonal therapy (men who wish to become women) are Spiro and … you guessed it … Finasteride. My jaw dropped on the floor.

In the weeks that followed I discovered the Propecia hunger strike, suicides, the studies coming out, and was told my a doc everything I had experienced was linked to my use of Finasteride in 2008-2009.

I got in touch with a leading law firm handling the class action. Their full time medical doc who had interviewed close to 1,000 affected men did not even know that Finasteride is used as a primary treatment for M2F transgender therapy until I broke the news. I likely have no legal recourse b/c I took the generic version and the court system in this country protects corporations, excluding legal recourse for generic use, at least that is how the Supreme Court has ruled thus far. I now have personal transgender friends from my support group I joined earlier this year - WHO TAKE Finasteride - and are so happy with it, they say they wouldn’t want it taken from the market. It gave them the results they wanted.

I have debilitating brain fog/memory issues, which is now no surprise to me now that I have read the Post-Finasteride Syndrome blocks the same enzyme in the brain which is blocked in Alzheimer’s disease. I am broke and struggling to even qualify for disability as few docs even know of this condition much less Social Security.

SO the question is… why do transgender people not have these horrid side effects of brain fog, etc? I believe I know based on my crazy 3 year struggle with all of this. It is because transgender people are also prescribed another drug that completely knocks out testosterone.

Post-finasteride syndrome results in the body’s inability to USE testosterone by inhibiting conversion to DHT. The result is testosterone becomes like a poison to the body, resulting in braind fog, memory issues, anxiety etc, and the only thing that helps is reducing it. This explains everything I’ve read from all victims - including many that say “fasting”/losing weight helps with the brain fog. Of course, because “fasting” shrinks muscles, which reduces free testosterone in the body.

I had some slight bisexual feelings when I was young, but moved on from that having felt like I liked women much more. I got married for 10 years and have a son. However I think it was those feelings when I was younger that - in the 3 YEARS after quitting Finasteride that I had NO IDEA what the hell was happening in my life, I came to the assumption that “I must have been right when I was younger”. However I quickly determined (again) that in no way did I feel gay - but that led to me accepting that I was feeling transgender in late 2010/early 2011 - emotionally, cognitively, and physically. At that point I became near-suicidal for 4 months, no money, living without electricity in my loft from January-April 2011. I finally pulled myself up after realizing “checking out” could never be an option for me… and the fact I was a parent… I decided that I was transgender and that must have been the cause of all my woes. That led me on a 12 month path of coming out slowly, therapy, support groups etc from April 2011 - April 2012, before all these dots started connecting in May 2012 and I felt like I had been “Punk’d” or on candid camera when I learned I may be prescribed Finasteride for transgender treatment. I had stopped taking it less than a year before my marriage ended.

Anyway, with no legal recourse b/c I took the generic, feeling totally screwed over and waking every day now to spend the entire day unable to focus, with extreme fatigue issues, sleeplessness, having lost over 40 lbs of muscle, and feeling unable to work… I decided to just share my story publicly, which I’ve done here:

MandiMcKee.com

I was going to try and get a doc to prescribe me Provigil to see if that would help with the brain fog, but just read on this site today another post talking about how Provigil has its own share of nasty effects similar to Finasteride. If anyone has any experience or rec’s for treating the brain fog issue successfully, I would surely like to hear them.

Right now, I am hanging in another 2-3 months, getting my blood work done, etc. If I haven’t seen improvement in that time, I’m moving ahead with further transgender hormonal treatment to knock out my testosterone altogether. Based on all the science, testimonials, everything I’ve read - I am firmly convinced that knocking out my testosterone will solve the brain fog issue.

#19

I agree some what with you here. when I was on Agel, initially I felt better but soon starting feeling awful. one nigh,I got up and felt like there was no energy in my body. I was thirsty I tried to pick glass of water (which was already with my bedside and did not have to walk or move a lot)but could not bring it to my mouth. my arm seemed with out blood and energy. This made me crazy. I got so frightened and after few days I decided to stop Agel. Awor also wrote his experience with DHT cream. AFter applying DHT cream to his chest he felt like acid poured to his chest. Our body has turned hostile to this valuable hormone. So what would you take to knock out your testosterone? and how would you manage to live without any testosterone? may be knock out all testosterone and then after some months slowly start taking it again. this is how allergy to some foods is overcome.