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?) HLT
What is your current age, height, weight? 27, 5’8.5 150
Do you excercise regularly? If so, what type of excercise? Lift 3 times a week
What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Healthy
Why did you take Finasteride (hair loss, BPH, other)? Hair loss
For how long did you take Finasteride (weeks/months/years)? 6 weeks
How old were you, and WHEN (date) did you start Finasteride? 27, 8/2014
How old were you when you quit, and WHEN (date) did you quit? 27, 9/2014
How did you quit (cold turkey or taper off)? Cold
What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Finasteride generic
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg
How long into your use of Finasteride did you notice the onset of side effects? 1 month
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
[ ] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] Watery Ejaculate
[ Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat
[ Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[X ] Stumbling over Words / Losing Train of Thought
[ Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[X] Suicidal Thoughts
Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ]Penis curvature / rotation on axis
[ ] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Acupuncture. Nothing else yet. Starting soon. I waited long enough
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)? Super low serum test, free test, LH. Possible thyroid problems. I will post labs soon
Anything not listed in the above questions you’d like to share about your experience with Finasteride? After coming off Fin, I no longer have the MPB itch which is disturbing. I essentially sold my body and soul for hair.
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug. I started to take propecia in august as a preventative measure against further hair loss as my temples were receding more each year. 1 month into it, I started to develop insomnia and nocturia. Everyone says to just wait it out. I waited for 2-3 more weeks and couldn’t stand being a zombie anymore. I stopped last September and thought all would be well. It has now been 6 weeks since I have been off and nothing has improved. I now have 0 libido, weak erections, penis looks old and super veiny, eye bags and hollowing under the eyes. The eyes bags are killing me as it looks like I have some eye allergy going on 24/7. I now have noticed wrinkles forming under my eyes as well. Prior to this whole experience, I have always had a baby face. Now my eyes have aged 10+ years in 2 months. Cheeks may have sunken a bit as well. I have reduced many social activities due to shame. My self esteem is now 0. I went to the urologist to check out my nocturia and frequent urination. He did a DRE and said my prostate was normal. Gave me drugs for overactive bladder and sent me own my way. He did not believe propecia was harmful. I am seeing him tomorrow with my blood work which shows I now have the test levels of a woman.
[b]My current plan is to either try for a short term HPTA restart with clomid or toremifene. If that does not work, then it is off with lifelong TRT+HCG+some kind of safe antiestrogen at the age of 27 which is great. I now have to wonder if I will have fertility issues. I had lasix done in 8/2014 so I am very hesitant with using stuff like clomid long term since they will destroy your eyes.
I currently take lorazepam for insomnia which lets me sleep for at least 4-5 hrs uninterrupted.
[/b]
I read your story and I can relate 100%. I broke it off with my ex and regret it everyday. After break up, I had low self esteem and what not. I took propecia to “improve” myself and now look where I am. If I was still with her, I probably would have never taken it.
Went to the urologist yesterday with my pharmacist sister. When I first talked to the nurse who was writing me up, I was sounding pretty anxious. My sister said that I was being too crazy and should play dumb with health practitioners. Let them come with their own conclusions with subtle hints along the way. The more you push PFS on them, the more they will dismiss you as having some kind of mental disorder. My sister also does not believe in PFS.
I stopped taking the over active bladder med that the urologist gave me before because I felt like it was not doing anything for my insomnia + nocturia. He told me I should have stayed on it for at least a month so he could come up with a differential diagnosis. He gave me more samples of the OAB drug, Mybetriq. If my nocturia does not improve after a month of treatment, he plans to stick a tube up me to take a look inside.
I showed the urologist my hormone levels which shows I now have hypogonadism. He plans to do a HPTA restart with an anti estrogen which I already figured from my previous post. I haven’t really see any success with PFS + HPTA restarts so I am not too optimistic. At any rate, I have to up my androgen levels in my body regardless if it helps with PFS or not.
Urologist prescribed me anastrazole for HPTA restart. Clomid is the standard. I took anastrazole for 2 days. 2nd day it gave me good morning erection and erection quality. However, tinnitus set in after I started. I don’t know whether tinnitus is from the propecia or anastrazole. At this point, I distrust all pharmaceuticals. The constant ringing in my ears is putting me even more over the edge. I dropped the anastrazole since it wasn’t going to accomplish the HPTA restart anyway. Urologist wants me to schedule another followup before giving me any alternative.
I went to a different doctor and showed her my blood work. She refused to give me any HRT because I am too young and wants to wait another month to see if my body recovers. My body isnt recovering because new after effects are popping up weekly. How long do I have to sit here and waste away?
Went to urologist again. He prescribed HCG. I have to wait 1-2 weeks to arrive through mail order pharmacy.
I am going to my post Lasik followup next week. I am going to ask eye doc to check out my floaters and blurry vision. It sucks I only got to enjoy my perfect vision for 2 months before it was ruined by this cursed drug.
I am currently taking
Mybetriq
Vit D3 5000U
Iodoral 25mg
Selenium
Melatonin XR
Tribulus
I ordered a HGH peptide to see if it will help combat the PFS rapid aging we are all experiencing.
Wow man you really do seem to be experiencing the same thing as me. I recently developed tinnitus, too, and I had LASIK earlier this year and now that’s going also… It really seems like new problems just keep popping up instead of the old ones getting better. You ordered an HGH peptide? Are you going to inject yourself?
For acute onset tinnitus sufferers (<3 months), sign up for new drug trial AM 101. I hope they reply back to me. Success rates are mixed. I’m not sure how much it will help our drug induced tinnitus but better than nothing.
I went to eye doc today. He said my floaters are worth checking out by a specialist. Could be a retinal tear…For anyone, who experiences flashing lights, please see a doc immediately! Thats a tear that progressed to a detachment and must be treated ASAP
IFeelLikeDying - It seems we are very similar in terms of fin sensitivity and hormonal imbalance. We should definitely work together with PFS regimens in future. I ordered Hgh peptide to combat the muscle and skin wasting. I still haven’t committed to 100% in using it though. Someone recommended I hold off for now. Insulin needles are fine for Hgh peptide and Hcg Subq injection. I plan to self inject. The needles are thin and you just stick it in your gut at an angle.
I went to a eye specialist today that my regular eye doctor referred me too. He said my retina was fine which was kind of disappointing. That signifies that there are nonstructural issues going on that can’t be easily seen. Doc said I was young and should not be having issues. He did say being near sighted was a risk factor. He kept on alluding that Lasik was the source of my problems. If I never took fin, I would agree with him. If you ever been to a eye doctor, you would notice all of them wear glasses or contacts even if they were physically qualified for lasik. Ever wonder why?
Current plan:
Follow up with Lasik doc (not expecting much)
HCG arriving Saturday
Hgh peptide already arrived.
Mybetriq
Vit D3 5000 U
Iodoral 25mg
Selenium 200mcg
Fish Oil
Tribulus
Melatonin XR
I have collagen loss on my face and fingers too
Also i have fucked vision and tinnitus
Muscle twitches/pains
Depression/ no emotions
Numb tiny dick
Depression
So let me know if something works for you. Nothing worked for me so far.
Yes it hard to think of anything other than PFS 24/7 but you are still very early days in terms of your time off the drug. I’m approaching 2 years off now and I’ve made some huge improvements. My biggest area that I’m lacking is sexual function, for me that has never got better
Please hang in there and in time you will see natural improvements
huhohyeaok, when you were seen by the eye doc, did he perform a glaucoma test as well? Just curious.
I was on propecia for 14 years. I developed eye floaters about 8 years in, around your age. I didn’t realize that they were from the propecia at that time. I didn’t understand where they came from. I had no brain fog or any other health issues while I was taking propecia.
I started and stopped propecia a couple times which I think made the PFS much worse. I’d recommend to anyone that if they’re on propecia currently, either keep taking it and don’t get off, or if you decide to get off at some point, DO NOT ever take it again. When you start and stop and start again it makes things dramatically worse. Not saying that’s what you did. That’s just what I did.
Anyway, I’ve been noticing soreness in my eyes and they are constantly blood shot. I think I’m going to get a glaucoma test. It will probably come back negative like all of our tests, but I’ll let you know the results afterwards. I think the 5AR enzyme plays a role in lubricating part of the eye lens, so it probably makes sense to get a glaucoma test. Seems like there’s a lot of eye related stuff going on with PFS. Floaters, eye lid drooping, bags under eyes, soreness and redness. I think it’s a good precautionary measure to get a glaucoma test. Most doctors will do this as a standard part of an eye exam anyways.
I’m sure time will heal this though. Hang in there! Will probably slowly get better day by day.
There is no recovery timeline. Some members improve over time and some worsen over time.
As of now there is also no known cure. Especially hormonal replacement has been tried and it failed for propeciahelp members.
This leads one of the most knowledgable posters awor to assume that we are suffering from adrogen insensitivity possibly caused by epigentic changes induced by finasteride. Even though this theory seems most plausible at the current stage, it still has to be tested out.
The PFS foundation that exists since 2012 is doing stellar work in getting researchers interested in our ailment. However it is not getting the support of this community that it deserves.
Your best bets are:
Dont take more medications, as for most people it worsens their situation.
Dont jump on recovery bandwagons. Know that these have existed for years and that they are distracting from the real path forward: The foundation and scientific studies by professionals. Also appreciate that there are a lot of unstable people on here and a fair amount of Messiahs who claim to know of some cure (JustQuitDut for example).
Continue on living your normal live, with the exception of making it a goal to donate monthly to the foundation and to participate in studies .
Realize that living like a health nut and workouts wont cure you of this ailment. Many have tried an failed. The only common element of people recovering is time passing. Some have gotten better after 2 years, 3 years and 5 years. Some dont.
Below are two posts that are important for newcomers, posted by the modertor awor:
Glaucoma test was fine. Floaters is collagen loss. No treatment for that besides lasers. I agree anyone taking propecia should never get off or titrate off slowly for entire year
First off, I think the forum is kind of important for people like me who are still coming up to speed with all the ideas floating around about what PFS actually is, and how to deal with it. There’s a term in comp sci called a “playground” where you can play around with stuff and come up with your own ideas and theories. Essentially what the playground does is allow you to self educate and get up to speed without judgement, ect. Everyone needs a playground before they can get to a higher level of understanding. I just got PFS, for real, 3 months ago, even though I’ve been on the drug for 14 plus years. I’m still catching up to speed with the theories, and learning.
But I agree with you…
If you have a potential investor in your company, for instance, and you point the investor to the playground, where everything is a mess and disorganized and people are still learning, he is not going to be interested in investing in your company. You need to point the investor to a polished, professional-looking website, with the idea of your proposal expressed clearly, and a summarization of your theory and why they should invest their time working with us clearly.
That’s kind of along the lines of what you’re proposing here pvdl.
So, my suggestion to you is, if you are actively working with scientists and have a roll in recruiting scientists for PFS work, perhaps you may want to think about creating your own separate website where you present your ideas clearly, in a professional-looking manner. Under no circumstances should a candidate be pointed towards the playground for consideration about whether they’d want to work with us.
Second, this whole epigentics topic is very interesting, and very new to me and may even be very new to scientists and researchers in the field of pharmacology. On some level it kind of reminds me of CSS for a website or metadata. If we’re thinking of the cell as a simple html page, we can see the basic functions that are occuring within the cell. However, when you group a bunch of cells together, there’s an unseen set of instructions somewhere else telling the cells how to function in harmony with one another. This is not coded within each cell, like html. It’s more like the CSS (cascading style sheets) for a a website, that tells every cell, or html page, how to behave as a group.
This is pretty cutting edge stuff, and I wonder how many doctors, scientists, pharamcologists, ect even know about it.
Third, I have a couple of thoughts concerning the road analogy:
A. We need to first have a collective agreement that epigentics is the way we want to move in order to solve our PFS issue. There needs to be a very convincing argument put forth that this is the area that is the fundemental root of our problem. I think this may be the reason why not everyone has jumped onto the bandwagon and fully backed this funding with dollars.
B. If epigentics IS at the root of our problem, we certainly DO have a 100 mile walk through the desert. Why? Because, we are going to need to find a professional in, what I perceive to be, a very rare field of study, interested enough in our PFS issue to dedicate years of study towards helping us find a solution. Not only that, we’ll need to convince this very rare professional that our very strange, and not-universally-accepted condition is real, and then worthy of his time/effort. BUT, the good news is it looks like we have started this work already with the PFS foundation. That is certainly a blessing!
C. If we DO identify epigentics to be the root of our problem through the PFS Foundation’s studies, creating medicine to fix something that is epigenetic-related may be a totally new field of pharmacology. At least to my knowledge?
Have there been any drugs created to treat ailments on the epigentic level before?
Daily
Vit D 10000U
Vit K-2 100mcg
L-Arginine 500mg
Vitamin E 1000mg
Melatonin 5mg
Progesterone
Sporadic
HCG 250IU EOD
Vit C 1000mg
CoQ10 100mg
ALCAR 500mg
Digestive Enzymes/Probiotics
Selenium/Iodoral
Celtic Dreams
Lysine
Silica
Dropped the Hgh peptides as it was giving me carpal tunnel. HCG made my balls bigger but thats about it. These were the only noticeable effects from any medicine/supplements I have taken since this adventure began.
Current sides
Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[X] Watery Ejaculate
[X] Reduced Ejaculate
[X] Inability to Ejaculate / Orgasm
[?] Reduced Sperm Count / Motility
Mental
[ ] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[X] Suicidal Thoughts
Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] Penis curvature / rotation on axis
[ ] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes
I’m most worried about my declining vision, muscle wasting, and diminished intelligence levels. My hands, feet, forearms are getting thinner. If I could somehow stabilize these and somehow reverse my zombie looking, LSD perceiving eyes, I could move on with my life. I got a MRI done and will be seeing the neurologist tomorrow. I will be seeing urologist on Monday to beg for some testosterone to add onto HCG. Hopefully testosterone will at least allow me to hold onto muscle (I’m low T) and make my skin oily again.
