Was a lurker: Off Propecia for 3 years

Member Stories
#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.

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#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!

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#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

#21

I got bone profile blood test done, everything came up within range, but my jointa are fucked. Next week I will do MRI to see what ia hoing on there…

#22

I have vit D deficiency too, started to taking them again today. Never measured my blood results after supplementing it. Hmm maybe i should?

@tisho1012 How was your bone density tests? All normal bro? (Also, you made a promise to measure your height of you, about have lost it ahah lol? Just curious. )

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#23

Hi man :slight_smile:
My height turned out to be normal, no changes here. My blood test was for bone profile, everything is within a range, so I suppose my bones are fine, appart from the joints…

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#24

Problem with many posters on this forum is their 2-Dimensional view for many vitamins and minerals supplementing plan. You can’t simply take a few isolated vitamins and minerals and VOILA! prime examples of this is over loading on vit D3 and Zinc thinking these two would boost low T.

ALL vitamins and minerals work in synergy. Taking too much of something leads to deficiency in something else. High Calcium (AKA Hypercalcemia) could be a problem with kidneys, parathyroid disorder, low vit. K, high vit. D, high Ca intake and/or low Mg.

You can’t simply dismiss Ca thinking this is the root cause. Godspeed