Struggling with PFS (8 years taking propecia)

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
United States

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?)
Google Search

What is your current age, height, weight?
36, 69 inches, 167

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride (Propecia and generic versions)

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

What condition was being treated with the drug?
Hair Loss
For how long did you take the drug (weeks/months/years)?
8 years

How old were you, and WHEN (date) did you start the drug?
28 years old, started on/about September 2010

How old were you when you quit, and WHEN (date) did you quit?
36 years old, quit on/about 1 December 2018

How did you quit (cold turkey or taper off)?
I suppose cold turkey. I would take Propecia at least 4-6 times per week and it was common for me to miss two weeks of dosing

How long into your usage did you notice the onset of side effects?
Sexual side effects and sleep issues (waking up at 2 AM wide awake) was common early on. All the other symptoms started when I completely quit.

What side effects did you experience that have yet to resolve since discontinuation?
Muscle twitching/aches, loose stools (yellowish), some body hair loss, depression at times, mild abdominal rash, cortisol issues

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ X] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[*] Loss of Nocturnal Erections
[X ] Watery Ejaculate
[X ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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
[ ] Gynecomastia (male breasts)
[ X] Muscle Wastage
[X ] Muscle Weakness
[ ] Joint Pain
[ ] 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
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ X] Increased hair loss
[X ] Frequent urination
[ ] Lowered body temperature

[X ] Other (please explain)
Lower blood pressure and heart rate. My sleep pattern has improved however I will still from time to time wake up early for no reason. It will take me 15 mins to get back to sleep. I am also experiencing bloating and gas issues (bad).

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I tried 5-HTP (50 MGs/per day), L-Theanine (100MGs/per day), Magnesium (250MGs/per day), and Melatonin (3 MGs/per day) for three days but that seemed to make things worse. I also went to therapy sessions because I couldn’t figure out why I was so depressed.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
I’ve done various WBC, CRP, ESR, ANA, Adolase, and Hormone Tests. Everything was in range except for my ANA (comment about ANA negative but cytoplasmic fluorescence observed) and my cortisol levels and PG/E2 ratio.

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

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
My story is the old frog on a heating pan concept. When I started propecia in 2010, I was drinking wine usually when I would take my dose and I didn’t notice much side effects. I was a single man at the time and was frequently in sexual relationships and didn’t notice much change sexually (I loved having sex at this time). I did however notice that when stress correlated with my job increased, I would tend to feel more anxious and my quality of sleep slightly declined as well. When I was in college, I was able to sleep through the night regardless of stress. This went on for a couple years and then I started to notice I was emotionally numb to everything (shortly after marriage and having children). I didn’t care about social situations and I would distance myself for everything–why? This was not myself. I no longer care about sex and I hardly think about sex anymore. It wasn’t until last year when I cut out propecia completely did I dive into deep depression, insomnia, and suicidal thoughts. It was depressing! When all this started, I tried supplements listed above and that’s when I started to have additional symptoms: muscle, digestive, and skin/hair issues (was this part of the crash)? My hair on my head is falling off, as to be expected. There are days I feel like I wont make it to tomorrow because of these odd symptoms. I am married and have two boys–they are the only people in this world that are keeping me from putting a gun to my head. I am an active duty officer in the military and the hard part is military doctors don’t listen to a collection of symptoms–they only want to deal with one symptom at a time and get us back into our mission. Now, here I am. I orginally thought I was having symptoms of Eosinophilia-Myalgia Syndrome (EMS) from the 5-HTP however based on conversations with Dr Naylor and Dr Gleich who were heavily involved with EMS outbreak patients back in 1989, it was determined I don’t have EMS. They suggested PFS because of how long I was taking the pill vs how long I took 5-HTP. This journey is a doozie. I don’t feel like the same guy I was last year…

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Progress update
#2

Welcome to the site! You must be one of very few people who were told they might have PFS by a doctor. You must have some good docs in the military then (outside of psychiatry).

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#3

Much respect to these doctors for being reasonable in their assessment, rather than providing the knee-jerk “it’s all in your head” diagnosis. This is also a good sign that PFS is slowly being recognized.

.

3 good reasons to hang on. I have a friend going through tough times after complications from a stroke and impending divorce who said the exact same of his daughters. I hope your family helps you to keep your spirits up in addition to providing a feeling of obligation. Just know that you are still in the early days of PFS at this point and there is a good chance this will improve.

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#5

Appreciate the feedback. Just to be clear, all correspondence with Dr Naylor (Toxicologist) and Dr Gleich (MD) was via phone or email. I didn’t see them in person. They did provide tremendous insight because there’s overall with EMS and PFS symptoms.

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#6

I’ve had PFS about 4-5 years now and think I’m pulling through the other side now, I’ve not really done much apart from things like Tribulus, Ginko, L-carnitine, shit loads of multi digestive enzymes, tons of acidophilus complex, tried Biotin before I discovered that what I had was PFS and Biotin was the first sup that gave me complete temp recovery for about two weeks. I’m a pretty firm believer that complete recovery is very possible as long as you don’t mash yourself with certain things I’ve read about here like AI. Also you maybe aware of how alcohol doesn’t seem to effect us like before we had PFS, well I’ve been out today to the waterfront here in sunny Bristol England and had two Stella’s and felt a little tipsy how I used to and felt very merry and talky and cheery and happy. So really this is a message to say hold tight don’t do anything severe and things will get better :muscle:t2::muscle:t2::+1:t2::+1:t2:

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#7

Appreciate the words of encouragement, brother

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#8

That’s interesting, was there a point where you didn’t respond to alcohol?

#9

Hey man, im sorry for your story,how are you doing now? Have your symptoms improve in this year or you are the same way or worse? If you improve could you tell us what you did?

#10

Thanks for the note. I’m trying to take things day by day. I first tried to self treat myself as mentioned above and that wasn’t effective (I believe). I’ve been avoiding gluten, caffeine, and alcohol for now. I’ve seen a neurologist and major diseases were ruled out. I’m currently seeing a Rheumatologist to rule out autoimmune issues and a cardiologist because I’ve noticed slight changes with my heart rhythms. I’ve basically completed a stress test (everything came back normal) and currently wearing a heart monitor. I’m a runner by trade so my resting heart rate is usually in the 40s. There have been times however that my heart will suddenly speed up for no reason. I’m making preparations to see a GI doctor to rule out GI issues especially with my loose, yellow stools for the past three months. I continue to run at least five times per week and incorporate light weight training where I can. My muscles still twitch, slightly ache at times, and feel tight from time to time. My cortisol levels are off and I have some PG/E2 ratio issues. I’m lucky to have an unemotional wife who keeps me in check—she’s all facts based. I can be emotional at times because I know something is wrong but can’t get a clear diagnosis. Appreciate you checking in on me. Hope you’re doing great as well. I’m always willing to take advise.

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#11

No for a long time alcohol didn’t effect, or when I did drink it I’d know I’ve been drinking but wouldn’t have the usual effect would feel worse sometimes. Starting to get that merry feeling back if I drink now, never been a big drinker at any time.

#12

That’s good news then @ginge1612! Whatever systems that weren’t working must be coming back online.

Unfortunately you’ve now missed the opportunity to engineer drinking contests and make some money. Swings and roundabouts though. :slight_smile:

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#13

Hope you get with an effective treatment for you, how are you doing with the depression symptoms and apathy? have you try a psychiatry? maybe he can prescribe you some antidepresssant i know that people here have syndrome from antidepressant but problably will help you with your mood and to take this syndrome with a positive point of view and maybe try also a psycologist and having a healthy life.

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#14

Hey man, I too am an officer in the air force. I’m not very active on this forum and not sure how the message functionality works, but feel free to reach out. Thanks.

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#15

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then just click on “New Message” button on left. The rest should be clear.

#16

How are you doing on your side? Glad to see a fellow O on here.

#17

I’m doing alright! By no means cured but working on my masters at a national laboratory in conjunction with AFIT. I’d like to return to ALO when this masters is all said and done!

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#18

At the eight month mark, here are the symptoms I still have: muscle twitching and aches (varies per day), itchy skin (varies per day), skin redness which looks like allergies, loose, fatty stools (but gaining weight), dark circles under my eyes, hard time sleeping from time to time, lack of sexual interest, lack of sweating in certain areas but a lot of sweating in others, occasional heart rate increase (feels like adrenaline will kick in for no reason), allergic type reaction to bug bites (new symptom). In addition my CBC is normal but my MPV and hemoglobin numbers are both out of range which is not the norm.

Things that have improved: slight increase in libido in the early morning (still low throughout the day). Muscles don’t ache as much as in the first months or so. I also don’t feel as depressed throughout the day as I did in the beginning. My vitamin D has improved but it’s also summer time.

Overall, it’s still been a tough eight months considering I was on Propecia for eight years. Will update next month.

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#19

Keep on grinding dude! You are killing it!

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#20

Thanks man! It’s been a hard road but just have to keep on marching! Likewise! Keep grinding!

#21

One quick update: had 3.5 glasses of wine last night and I noticed my tolerance for alcohol has drastically improved! When I was on propecia, I could barely get through a glass without intense fatigue and brain fog.

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