Was a lurker: Off Propecia for 3 years

Member Stories
#1

  1. How did you find this forum? Internet search 3 years ago, now back after attempting several things.

  2. What is your current age, height, weight? 29, 6 ft. 2 in, 205 lbs

  3. Do you excercise regularly? If so, what type of excercise? weights 3x week, yoga / running 1x week.

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? organics with meat for weight lifting purposes

  5. Why did you take Finasteride (hair loss, BPH, other)? I started losing my hair at 17, started Propecia at 18.

  6. For how long did you take Finasteride (weeks/months/years)? 8.5 yrs, until 26.5 yrs old.

  7. How old were you when you started Finasteride? 18

  8. How old were you when you quit? 26.5

  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? Propecia

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

  12. How long into your use of Finasteride did you notice the onset of side effects? I noticed some difficulty getting an erection and decreased sensitivity while still taking Propecia. Further, I had some “IBS” symptoms which I could not seem to get rid of. Knowing what I know now, I believe these were the result of finasteride.

  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
[ XX] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ XXX] Watery Ejaculate
[XXX ] Reduced Ejaculate
[XXXX ] Inability to Ejaculate / Orgasm
[ ?] Reduced Sperm Count / Motility

Mental
[ XX] Emotional Blunting / Emotionally Flat
[ XX] Difficulty Focusing / Concentrating
[ ] Confusion
[ X] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ X] Depression / Melancholy

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

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

[ ] Other (please explain)
Trouble voiding; e.g., the feeling that there is still cum / urine in the urethra after peeing / ejaculating sometimes

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

I’ve tried various natural treatments

  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)?

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

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

I got off Propecia in 2013 after having trouble with “IBS” and loss of sensitivity. I experienced the usual two week upswing, followed by a crash where I was borderline crazy, and could not get any erections. I saw a string of doctors, some of whom told me I was in my own head, that it was impossible for Propecia to cause this, etc. I found this forum, and felt a sense of dread. I decided to ignore this forum for a while and see if I could improve on my own.

Eventually after 6 months of just weight lifting and eating better, I got to an integrative doctor. He was able to help me with my “IBS.” I think Propecia causes inflammation, which led to my problems with digestion. I cleaned up my diet further, went mostly off dairy, and added digestive enzymes (digestizymeV is good) and a probiotic (Orthobiotic - is the brand). Both have been helpful, and I continue to take them today. Further, he added Vitamin D3, and I was already taking fish oil and a multi vitamin. None of this is earth shattering, but combined with diet and weights, I began to improve. Zinc (50mg) sometimes also led to monster erections, which can be fun.

I had about 3 months of serious depression / REM cycle sleep issues. That eventually stopped. My mental sides are the part that is most improved. I think diet, exercise and time are the most helpful things I can point to that have helped me. I’ve only taken some protein powder (“natural”) as a supplement. I’ve read in a few places, including here, that creatine has led to crashes. I still might try it though.

In the last three years, I’ve tried a few other supplements that have done nothing for me. They include:
-Maca: no influence. Whole Foods brand pills.
-Evening Primrose Oil (allegedly for penile shrinkage) - no help - Trader Joes Brand.

I also take MitoEnergy, and MitoActivate, which are expensive Copper and Multivitamin supplements, respectively, that my integrative guy recommended. They are also used by people with other chronic, not understood syndromes. I’ve had other doctors look at the ingredients, and they think that there is nothing harmful in them, but they are also sceptical that they do anything.

Improvements: I have more energy. I think clearly. I was able to get through law school and pass the bar exam and get a job as a lawyer (and I’ve looked into it, Merck has made it pretty damn difficult to sue on this junk). I can even have sex, so I consider myself fairly lucky. My main problems now, 3 years out, is the anhedonia / flatness, and the lack of sensitivity. Without manual stimulation I can only get off like 10% of the time. And it decreases the longer I’m with a girl. (the newness is helping me out at first).

Nevertheless, last year I was well enough to start a relationship. I’m still dating that girl, and we are good. But she wanted me to try to get some help again. (I’ve had mixed results - the integrative guy was helpful, but other docs have said it was all in my head, or that I just need to lose weight).

My testosterone was been low: in 2013 it was at 310, then 370, and then this year at 270, despite a focus on weight lifting and eating meat. I’ve now been back through the ringer of the medical industrial complex, and have done the following: January: went to planned parenthood to try and get antibiotics for prostate pain (I get intermittent dull aches, weight lifting and pomegranate juice help, but do not always alleviate). Dr. won’t give antibiotics unless you show an infection, which my blood work never does. Then I get referred to a urologist. He was skeptical and useless. He referred me to a Endocrinologist. Today, she recommended Clomid. I’m about at the end of the line here. I’m worried about the long term effects of low testosterone, and also worried about taking another prescription drug. I’ve tried to beat this with natural stuff, but at this point I think the risk of Clomid is worth attempting to jump start my testosterone .

My apologies on the grammar of this post, but the last thing I care about is editing for grammar in an online forum for propecia. I already feel like managing this thing has taken over my life; I don’t want to spend any more time on this than I have to.

If I had to put a percentage on how I feel, I’d say that on average, I’m at like 60%. I also have had temporary success with some cleanses. I suspect that is from lowered fat percentages, but what the hell do I know, I’m not a scientist / MD.

Ask any questions you might have, I’ll check back soonish. I also am curious to hear your thoughts on Clomid. In particular, I am worried about it because I have an epididymal cyst (they ultrasounded and its normal) but I know Clomid has a link to uterine cysts, and I’d hate to exacerbate something if I can avoid it. But I also think it’s my only option.

#2

Lots have tried clomid, some have had bad results some have had better results. I think there are risks in taking this drug. Look up “The dark side of serms” I do not think you can jumpstart your testosterone. It is low for an unknown reason and until that is fixed you can not do much.

Taking testosterone would be a lot safer and maybe you will see some benefits. If not you can just stop using it. Most do not experience much benefit on TRT even if their T is low. Like mine is.

#3

Hey Paul,

In a way, it’s good to see you have improved. I can relate very easily to your story as is looks alot like mine. Anhedonia is one of the hardest issues to deal with, in my opinion. When you don’t look forward to week-ends, holidays, dinner with family and friends, and of course to having sex, life gets hard !

It’s been 27 months for me … sometimes I have better days, but most of the time, I would say I am around the 30-40% mark. I’ve had a lot of personnal issues in the last few years, so I’m not sure what is directly related to PFS and what is just my situation.

Anyways, I think you have the right approach to go on a natural path. Exercice, diet, stress management and time seems like the best route. I encourage you to keep doing so for a few more years … I think that’s what I will be doing. If I hit year 6 or 7 without any significant improvements, then I will look into more aggressive methods.

Best of luck.

#4

I am going to try another solid month of diet, exercise, and sleep, and not take Clomid at this point. It’s difficult to stay as robotic as I believe I need to be to see results (and I have in the past), but it’s the safest option. The research on Clomid seems mixed. I don’t want to fuck myself up further, but I’m in a bad spot as it is. I have very little sensitivity, and the anhedonia is rough. My endo finally got back to me a full week after she said she would (although it was through her nurse, so I didn’t even have the privilege of talking to the doctor). She said she talked to other Endos, and said they had heard of post finasteride syndrome, and that it was unusual that it hadn’t resolved after 30 days (LOL). So she knows nothing, and I’m out the money and time (3 month wait!!) to see her. Great system. Now it’s a question of whether I even go back to the Urologist for the follow up ($100 co-pay!) and have him tell me he doesn’t know jack shit. I’ve been dealing with this for almost 4 years. At this point I know more than the doctors. And unlike them, I am interested in a solution.

I’ve also had terrible luck with doctors. Multiple times they’ve lost blood tests, claimed that my saliva testosterone test was useless, have been unable to tell me what things will cost, and delayed appointments for months out. The US medical system is broken. I have insurance (not great insurance, but decent), and it barely does anything. And the doctors don’t listen, the staffs have been completely incompetent, and it’s a total joke.

I think the best thing I can do is return to what has worked before: complete commitment to diet and exercise. The problem is, I’m moving in with my girlfriend (our sex life has cratered, and since we hang out often it cuts into my time to get to the gym, which further hurts it) and that will be tough. But at least I know that working out isn’t going to give me liver cancer.

Fuck doctors, fuck Merck, and fuck “the system.”

I still live my life, but sex has been ruined for a while. It’s pretty depressing, and the ball ache is constant if I don’t drink pomegranate juice (I don’t remember what that does exactly, my memory isn’t great now, but it directly helps ball ache).

#5

Update: mentally I feel 90%. I still have a little trouble concentrating, but I can manage it. The trouble is that I’m a lawyer, so not being 100% mentally is tough. I’d hate to miss an issue on a case and get screwed. I’m sure I mentioned this before, but after the first 3 or 4 months off, my sleep improved with strict regular exercise, and it has stayed good, although it’s maybe a little light.

Physically: I weight lifted for the first three years pretty consistently and it helps. The last year I’ve been lifting less, and I think that is definitely a mistake. I do think that it is more difficult to gain muscle mass with PFS than it is without, but you can’t just not lift with this thing. It definitely impacts my testosterone levels, and it breaks me through the anhedonia for 15-25 minutes after a workout (pitifully short, but it’s something). I need to start doing some high intensity interval training. I do yoga maybe once a week. I think the sweating is good, and I think it’s mentally healthy.

Supplements: vitamin d3, zinc, fish oil, multi, probiotics (I have seemingly endless issues with bloating).

Remaining sides: anhedonia, inability to get off with my girlfriend, real difficulty getting hard with my girlfriend (I can masterbate, but it sucks), some blurred vision in my left eye from time to time (not sure this is related, but I’m 95% sure it’s not an issue with my contacts, and I have read in various places that PFS can cause this), pain under left ball / prostate (checked out - fine, but for a small benign cyst on left ball - again, I’ve read of other people having these). I’m in pretty good shape 6’2’, 202 lbs, but can’t seem to lose some fat in my chest (thanks Propecia), and a layer of fat on my hips. It’s the classic feminine body type thing from PFS that we haven’t seemed to figure out yet.

Basically, I’m just trudging along, hoping it improves. I have a doctor who will put me on clomid if I want. I’m holding off - I guess there are some studies with rats that show a link to cancer, and I don’t want to get burned again from a drug. My testosterone was relatively low the last time I had it checked (450 or so) so I’m skeptical of clomid.

My diet is clean: organic, recently cut out coffee since I felt some ball pain right after drinking it. I’m not drinking alcohol at all right now. I drink a lot of pomegranate juice (helps ball pain a lot).

One question: I’ve messed around with some other supplements to increase nitric oxide levels, as discussed on the peaktestosterone.com forum, but found limited results. I also seem to be more immune to zinc (it used to bump up my erections). Does anyone have recommendations for testosterone supplements to cycle?

Thanks guys. Hope we all beat this soon. If we can just change the laws, or get enough of us to document what happened, maybe I can sue Merck for us someday :slight_smile:

#6

I thought I replied last week, but I guess it didn’t take.

Anyone have any experiences with good results from quitting drinking coffee? I don’t drink that much (2 cups a day?), but I think it contributes to ball ache.

Also, If anyone has recs for supplements for boosting testosterone, please let me know what has worked for you. I’ve tried some stuff as recommended on peaktestosterone.com, but didn’t notice a difference.

I’m in pretty much the same place as I was, except I’ve been having some blurred vision in my left eye that comes and goes.

Thanks guys.

#7

This forum seems to be dying. I think I know why. For some reason, the moderators have created a waiting period between when a (new) user writes a post, and when it is posted. The problem with that is that many people lurk on this website. Then when they reach a breaking point and post, they find that their post doesn’t show up. That’s discouraging, and against the idea of what this place should be.

#8

Same general place. Anhedonia is the toughest part. Being in a relationship and having no sex drive is rough as well. But I’m mellowing out mentally. I don’t get the spikes of anxiety nearly as often. Mornings are usually the worst. I also have a dull prostate ache on the left side that comes and goes. I suspect I have chronic prostate inflammation. I may do chronic pelvic pain massage / treatment in the next six months if I don’t improve before then. The auto-immune theory makes sense. I think we have inflammation in our prostates and guts. Probiotics and enzymes have helped my stomach inflammation, but I wonder if the root cause is the stomach, and if I need to go directly to that. That could be why squats seem to help.

Going to try low dose clomid along with cialis / weights / diet / supplements, and see if anything changes. Clomid seems to be the safest next step. I can’t see using armidex, as it just does not appear to be safe.

I’m amazed that in 2017 I’m still running into doctors and urologists who have never heard of PFS. Seems incredible that they are unaware of 6 years of studies / papers. Especially the urologists. It is such a narrow field, yet they are arrogant and ignorant. There are significant problems with how America trains its doctors.

#9

Some body-building sources say coffee and/or caffeine boosts DHT and other sources say coffee and/or caffeine inhibits DHT. A decade ago I remember seeing an expensive ($200 or so) German topical cream for male hair-loss made from coffee beans, the caffeine boosted blood supply to that region and blocked DHT or so it claimed. I think adrenal fatigue is a big part of PFS so I stick strictly to decaf and use lactose free milk or whatever they have at the cafe like almond or coconut, not soy obviously. Anything above about 30mg of caffeine gives me the jitters, I can’t handle it like I used to before PFS. I didn’t notice a difference in ball ache when I abstained from it for several months nor when I drank 2-3 cups a day. Most if not all teas are also dht-inhibitors, you’re better off drinking steamed milk or soup. Although some of them do release feel-good chemicals so it makes more sense to drink tea than coffee which only yellows your teeth.

#10

Hey Paul,

How did the low dose of clomid work for you?

Dr. Crisler is recommending the same thing for me. I would like to know how it made you feel. Especially in the sexual department in terms of erection quality, libido, ejaculate volume, sensitivity, etc.

Thanks man

I have severe osteoporosis diagnosed
#11

9/26/19 Update: I am doing worse. I have been having constant lower back aches for a few months. I’ve had a bunch of blood tests and they show that I have elevated calcium. My doctor thinks I might have kidney stones or a parathyroid problem. I am hoping it is just kidney stones because if I have a parathyroid issue that is probably going to require a surgery. My kidney function is fine, so that is good.

I also had a bone density scan, which showed that I have osteoporosis. I’m a 33 years old man, so that’s unusual. Not great. I think it is likely related to hormonal changes caused by finasteride. I’ve been off Propecia since I was 26. Nobody else in my family has osteoporosis, with the exception of my 91 year old grandmother.

I was completely healthy before finasteride. This is beyond frustrating, and I am about ready to start beating the shit of dermatologists who prescribe Propecia and continue to claim it is safe. It is absolutely not safe.

3 Likes
#12

Hey Paul,

Thank you for your update! I am sorry to read that you are doing worse.

You are absolutely right, Propecia is not safe and it’s a travesty that this far from widely accepted within the medical and scientific community. A product for a cosmetic problem that can have such life altering and persistent side effects should not be on the market.

The staff of this forum are working hard to create more awareness of this condition and to initiate more research into the underlying molecular cause. You can make a difference by supporting our projects as outlined in this post:

If you have any question, please let us know!

Good luck and keep us posted!

1 Like
#13

Hi,
Sorry to hear you are doing bad!
Vitamin D3 raises the Calcium levels. Did you take Vitamin D3 constantly?

#14

Yes. I was taking D3. 5,000 and sometimes 10,000 a day but the doctors think I am not absorbing it properly. My D levels are low: 21.9 ng/mL (normal range according to my doc is 30-100).

I have been off finasteride since 2013.

#15

So your D levels are out of range even after supplementing it?

#16

That’s correct. My body is not absorbing Vitamin D somehow. I have stopped taking D now because I don’t want to further raise my calcium levels. The calcium makes sense when you consider the osteoporosis. I am peeing out calcium and my bones are getting weaker.

#17

I got Vit D deficiency too. Supplementing at the moment, will see how it goes when I get new blood test…

#18

Thanks for the update. Your story is shockingly similar to mine. Also, I have been off for over two years and am now starting to have issues with my joints and/or bones. I am going to get a bone density test to determine if I too have osteoporosis.

#19

I had that today. So I just learned about the bone loss.

I recommend going to an integrative doctor. They are more willing to do extensive blood work/bone scan. If you need recommendations in Chicago or Wisconsin let me know.

#20

This was mentioned in my hair analysis test to stay away from products with calcium in them