My story / profile

Member Stories
#1

  1. Where are you from (country)? US

  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?) Ljnk from Dr. Irwig study online

  3. What is your current age, height, weight? 44, 5’ 5"

  4. Do you excercise regularly? If so, what type of excercise? Used to do cardio/inerval > stopped due to fatigue

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Balanced, no fried foods, little red meat

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

  7. For how long did you take Finasteride (weeks/months/years)? 6 months at first - stopped due to minor libido loss - started 3 months later and took for another 5 mos.

  8. How old were you, and WHEN (date) did you start Finasteride? 43

  9. How old were you when you quit, and WHEN (date) did you quit? 44

  10. How did you quit (cold turkey or taper off)? almost entirely cold turkey

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

  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? at the end of my first 6 mos., then immediately after stopping the second time.

  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
[x ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ x] 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
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[x] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x ] 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? 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)? Waiting on blood test

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? Besides impotency issues, sleep pattern changes and sleep loss is my biggest concern.

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

I first took Propecia at the age of 43 to prevent further thinning of my hair. At this time, my sex drive, erections, and ability to perform were normal, to on the high-side. Five and a half months into taking the drug, I noticed a slight disconnect between my brain and my penis, slightly lower libido and what appeared to be chest pains. This happened to be around the time Merck took down its regular Propecia website. Given the side effects and the fact something seemed strange about Merck’s Propecia website being down, I decided to stop. Within 2 weeks, I felt back to normal and believed Merck’s warnings that side effects usually subside after quitting.

About 2 months later, I noticed a lot of hair shedding during showers. Since I had no lingering side effects from my first round of taking the drug and Propecia’s website was back online at this time, I went back on for another 5 months. During this time, I began to read some articles in the press about the possible persistency of the side effects and got concerned. I also noticed my chest looking more like breasts. So, I decided to stop. I weaned off within 2 weeks, taking a tablet every 3rd day. After the 2nd week of tapering down and completely off the drug, I immediately noticed my evening sleeps were getting shorter. I could no longer sleep in more than 5-6 hours. More noticeably, my frequency and intensity of a morning erection become less and less. Then, my libido began to crash. I thought this might be temporary, since I quit the drug once before and successfully returned to a normal state within a couple weeks. Unfortunately, sleep and erections continued to get worse. Then about 2-3 weeks after this period, I got an erection out of nowhere. My sex drive felt stronger than normal. I thought I was “back”. This lasted about 2-3 days. Now 2 weeks since that time, I have no libido, no erections and I’m only sleeping 4 hours at a time in the middle of the night.

I had a physical this past week (about 5 weeks after being completely off the drug) and everything checked out fine, but waiting on blood work. I described my Propecia use, discontinuance and side effects to my Dr. and he seemed to shrug off a link to Propecia, since my sides flared up only after quitting the drug.

Right now, things definitely suck. I struggle making it through the day on 4 hours of sleep, I worry about being able to perform at my job and supporting my family. And obviously, I worry that I may have done long-term damage to my body. However, I have a few things going for me: A beautiful, loving and supporting wife, two great kids that mean everything to me and my faith. I just hope this drug and its effects don’t come in between me and any of those.

What I would ask now, is there a specific type of doctor that I should see? My physical was done by an internist, and he seemed fine, but I bet has little insight on PFS.

Thanks for reading and good luck to all.

#2

Welcome. You might consider seeing an endocrinologist, as they would probably have better insight into the drug’s effects on hormones.

Recommended bloodtests are here: propeciahelp.com/testing

If you fail to find doctors able to assist, consider seeing these docs: propeciahelp.com/doctors

Try not to worry, hopefully things will improve in time.

#3

Mew: Thanks so much. Your response is helpful and appreciated.

#4

Good advice wish I had tried not worrying as much.

#5

Got my numbers back today. Or at least my total T, since I could only talk to a technician and not my Md. Total T is low: 208.6. Doc wants me to go on Androgel, which scares the crap out of me, since it appears this stuff is a life-time committment and that it shuts down the body’s natural production of T. Does anyone know if this is true or false, or am I just reading too many internet posts?

Also, after researching Androgel online, there appears to be a list of potential sides. My Md’s assistant told me that he says there are “no sides” from Androgel. Seems strange to me and only scares me more, since he offered no other alternatives to this gel.

Also, one other strange thing, I’ve been off Propecia for 5 wks and I am losing very little hair in the shower. Does this mean the stuff is still in me or still working?

Thanks.

#6

Forgot to mention in my last post that my Dr. also said I am Vitaming D deficient. He wants to put me on a Vitamin D regimine. I read a number of things online that link Vitamin D to Testosterone. Any chance this could be the reason my TST is low?

#7

An MD so quick to suggest T replacement isn’t the kind of guy that you probably want steering your care. These are just knee jerk ‘solutions’ without thinking much about all the ramifications, much knowledge of PFS… Like i’ve cited here most MD’s apply known treatments to medically established conditions diseases… and PFS is NOT that by a long shot. He’s just fishing around in the dark and you could be worse off than you are right now. Study literature and experiences on this site before you agree to ANY kind of treatment, MD or self administered or otherwise.

#8

Ohioguy, review propeciahelp.com/treatments

Basically you have 4 choices:

  1. Wait it out and see if Testosterone/Vitamin D levels improve over time
  2. Use natural supplements (Testosterone boosters, Vitamin D ), weight training etc to try and boost your levels
  3. Try drug treatments like Clomiphene Citrate, hCG or Tamoxifen to try and boost Testosterone level
  4. Consider Testosterone Replacement Therapy (lifelong commitment).

Jumping on androgel right away seems the wrong approach to me as there are other steps that could be taken beforehand to try and boost your T levels, naturally or otherwise.

Here are some studies (Clomid, hCG) you could use to argue your case for drug treatment if you decide:

viewtopic.php?f=5&t=971
viewtopic.php?f=5&t=1515
viewtopic.php?f=5&t=66
viewtopic.php?f=5&t=67

Additionally you don’t have the perspective of all your bloodwork. Until you can see all results/ranges, you won’t know if there are other factors influencing why your T levels are so low (ie, elevated Estradiol, Prolactin etc). Request copies of your full bloodwork so you are informed, before making any decisions.

#9

Mew - Thanks so much for your reply. So glad this board exists and that I asked before willingly following the Dr’s advice. I will post my full numbers, when I get my results in the mail.

Also, the Dr. did prescribe a Vitamin D regimine, based on my D deficiency, of the following:

Caltrate D (600 Calcium, 400 D) twice per day
Vitamin D 2,000 once per day
Vitamin D 50,000 once per week

If you have any opinion or comments on this, it would be appreciated.

#10

5 weeks into this and I am really suffering. Don’t know how to handle it. I can barely face my daughters (5 and 10 years old), let alone play with them. Does anybody else on here have kids and had to adapt to trying to be normal in front of them, when our bodies are anything but normal?

I panic that I will lose my job, health insurance and ability to take care of my family.

My sleep is down to 2 1/2 hours a night. And it’s nowhere near a quality sleep. Don’t want to keep taking sleep aids, but if I stop those will I even get 2 hours of sleep? Any suggestions?

Also, my diet is suffering. The anxiety is killing any appetite for real food. Been trying to drink smoothies (yogurt-based + fruit + peanut butter) just to get some nutrition. Any suggestions?

I am going to a Urologist at Ohio State Univ. Hospital tomorrow. Not sure what he will or can do for me. Probably has not seen this yet.

#11

My only advice is to start vitamin D and you will feel better. I have kids and it is very tough to saty with them, but you will have to act normally infront of them, yes it is very difficult when you are tired all the time.
Unfortunately vitamin D is the only discovery that I made in 3 years.

#12

Pharmaceutical sleep aids, most of them induce dependency very fast with continued use, if you’re using those think about weaning yourself off them… unless one gets ever increasing dosages… they can cause sleeplessness. Just a caution.

#13

I think ZMA at bedtime helped me a little. I think some have suggested arginine as well.

#14

Suggest you bring the full studies by Dr Irwing and the other by Dr Traish, if you’re talking to an MD who doesn’t know about PFS. I typically print out the entire page:

propeciahelp.com/overview

at least the text overview formatted and so on to any appointment with a new M.D., giving them an overview verbally and then leaving all this stuff for them to hopefully review later… some have.

#15

I’m going back to my Urologist tomorrow as my first follow-up to my initial consult. I will get the results of the bloodwork he ordered. Once I get those I will post here.

At my initial consult, he reviewed my first blood test results (ordered by a primary care doc) which showed low overall T levels at 208. These tests were taken shortly after my initial crash, following my discontinuance of Propecia. The Uro and I did not talk PFS specifically, but he at least acknowledged my problems could be Fin-related. He did say since my T levels were so low, “we could approach it 1of 2 ways, Androgel or Clomid”.

At this time, I have no interest in A-gel, given what I learned on this site and other research. However, the Clomid route seems to have some merit for PFS. My question is, would Clomid be a life-long committment, assuming it helps with the sexual sides? Also, any idea of the common Clomid dosage for us in this position? I would just like to have some perspective from this community, prior to going in.

By the way, SLEEP, which has been my biggest physical side effect has gotten much better since my initial crash (approx 1 month ago). Still wake up mid-way thru the night, but can often get back to sleep with not much problem. Unfortunately, the sexual sides still persist.

#16

Do some searches for clomid using the search function to see others’ experiences. You might also consider posting on musclechatroom.com to ask Dr. Crisler directly what his thought are.

This study has a graph of clomid’s effects on T levels in a former anabolic steroid user who’s HTPA shutdown.

download/file.php?id=268

My guess is clomid shouldn’t be a lifelong treatment, it should be used to “jumpstart” the HTPA to start producing endogenous Testosterone again. How long treatment would be required to do so, is for discussion with your endo and via trial and error (there could be relapses/rechallenges, per the above study).

#17

Just trying to make some sense of where I’m at right now, so here goes … any responses are welcome.

The Bad
Quit almost cold turkey 2 months ago in mid-June after 4 months of using Propecia. At the time, I was having no side effects, but wanted to get off the drug, due to a number of articles being published in Men’s Health, etc., then seeing Irwig’s study on-line. Soon after, I noticed little-to-no morning wood, and sleep became progressively worse. I had the false hormone surge in early July where I was hornier than ever and wood was too easy. This lasted 2 days. By mid-July, I was getting 2 1/2 hours of sleep a night. This was my low point of the crash. Started Vit D3 and weight-lifting in mid-July and had 1 erection that woke me from my sleep. Since late July until now, sleep has gotten much better on average, however, I still have my bad nights. I still wake up once or twice, but I can often get back to sleep OK.

The Good
This week, I started taking Zinc (15mg) right before bed. Shortly after, I woke up 2 nights in a row with significant wood, 2 hrs into my sleep. Had a great time with the Mrs. Following the second night, I woke up with morning wood. Libido was back, confidence was back, felt great. (Foolishly) I felt like I turned the corner.

The Unkown
Last night, sleep was horrible. Woke up 3 times with sleep in between wake-ups lasting about an hour. Felt like my sleep during my initial crash. Today, I have no libido once again. Couldn’t get wood if I tried.

Question
WTF??? Does any of this make sense? Should it? I keep a log of my daily diet and exercise and can’t find any pattern. Was what I thought was hope just a few false positives? Should I just be thankful for the good days?

#18

Short answer: Nobody knows.

*Because this condition is novel, unique and has never been seen before in medical science nobody here or out anywhere in the world can really explain it, know if you’ll recover, or offer effective (surefire) treatment options outside of a few temporary or partial things that may help you.

Its sad but thats just the way it is right now.