My story: remaining hopeful

[Fighting]

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)? USA

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

What is your current age, height, weight? 45, 5’11”, 190

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

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

What condition was being treated with the drug? Hair loss

For how long did you take the drug (weeks/months/years)? 14yrs

How old were you, and WHEN (date) did you start the drug? 28

How old were you when you quit, and WHEN (date) did you quit? 42 & 45

How did you quit (cold turkey or taper off)? Cold Turkey

How long into your usage did you notice the onset of side effects? 10 years

What side effects did you experience that have yet to resolve since discontinuation? Insomnia, ED, fatigue, anxiety, depression

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

Mental
[ ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] 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
[x ] Severe Depression / Melancholy
[ ] 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)
[ ] Muscle Wastage
[ x] Muscle Weakness
[ ] Joint Pain
[ c] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ x] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x ] Other (please explain) insomnia

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Better diet, sups

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)? Lower T 325

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.

I took finasteride for about 14 years. About ten years into it I started getting headaches and slight, occasional brain fog. Once I noticed those sides a tapered my dosage to 1/3 pill per day. At 42, i decided to stop. I didn’t think I had any PFS at that time, but looking back I think I had a couple of slight symptoms (anxiety, muscle weakness). Fast forward to 4 weeks ago. My hair started thinning again so I decided to start back on finasteride because I had such good results. Obviously, I’m here so that decision ended horribly. Within about 2 hours of taking the pill I got very dizzy which lasted for the better part of an hour. No other issues at that time. I went to sleep that night and about midnight I woke out of a dead sleep with my heart racing. The next day thevrest of the symptoms hit ED, fatigue, anxiety, depression, insomnia. I went to the doc 4 days later and was given hydroyzine and Ambien CR. The hydroxyzine didn’t do much for me but the Ambien CR worked to give me about 6 hours of sleep. I’ve since moved to Tri Sleep from GNC which is giving me about 4 to 5 hours a night. The anxiety and depression have lessened some and the fatigue is slowly getting better. No improvement on the ED. I’ve started eating healthier and slowly working out.

I’m still working and being a family man. I’m hopeful, if not for a full recovery at least for the ability to cope with the hand that’s been dealt to me.

I’m grateful for this website and all of the very strong people on here that have endured this illness for years. Thanks for sharing your trials and tribulations along your journey.

I believe that having a strong faith and family will help me through these trying times.

[awor]

Welcome to propeciahelp.com. That you’ve taken finasteride for so long, and did not hit the bottom until now, would make me hopeful that your body has the resilience to sort this out. I would take it easy with physical and sexual activity for the moment, and don’t throw too many other substances into the equation for now.

Any substance that inhibits 5AR (there are many) should be avoided. They can make you feel a little better short term, but don’t forget that a 5AR inhibitor got you into this mess in the first place. Such substances (such as Zinc) are often recommended by users on this site, but I personally do not think that they are a good idea. Peanuts, blue berries and many other substances fall into this category as well. At some point I would like to provide an overview, but for now just do your research on google scholar, checking if current foods in your diet and substances you plan to take somehow inhibit 5AR or the androgen receptor. I am not a guru, this is just my personal experience.

I also used Ambien for almost 2 years every night. It was good at helping me sleep, but towards the end the effect started reversing, and it ended up behaving like a cup of coffee. At that point I stopped using Ambien, and have been sleeping without meds since.

[Fighting]

I wanted to post an update on my condition. My sleep improved after 5 weeks. Not back to pre fin, but better. The anxiety has subsided. The fatigue is still around but I’m learning to manage. I did develop some stomach issues which I’m trying to figure out. The ED is better too.

I don’t believe I’ll ever be back to my pre fin health. I’ve made peace with that. One thing that I have gained from this experience is an appreciation for what I still have. I feel it’s better to focus on the abilities I still have rather than focus on what I’ve lost. I truly appreciate the good days like never before.

I’m having to pivot on my job. I’ll have to move my family but it’s a job that pays the same and I can do it with my symptoms. I’m not mad or bitter just happy to make it through with my family in tact.

Good luck to everyone on this journey. Just my two cents but don’t long for the life you had, accept the one you have now and try everyday to enjoy it and make it better. Good luck and keep the faith.

[dutasteride]

@awor why are you against zinc? i have read that it inhibits 5ar activity but wouldnt the increase in test/good sleep benefits > the inhibition? ive been on zinc for 4 years.

[Fighting]

It’s coming up on my one year anniversary of receiving my gift from Merck so I thought I’d post an update. The first 2 months were brutal. I’ve never had a suicidal thought in my life, but thanks to this illness I had to get the guns out of my house. Thankfully, I weathered that storm with the help of my family. I thought I was cured for 3 months, but once my life got extremely stressful some of the sides came back. Here are the sides that remain: slight libido/ED, insomnia, gut issues, occasional anxiety, stress induced brain fog, and tinnitus.

Things that I’ve tried:
Keto diet: helps with the gut issues. Gluten is now my sworn enemy.
Weight lifting: 4 times a week. Really helps out when I’m feeling down. I’m getting stronger with slight increase in mass
Mountain bike riding: clears my mind and helps with mood. I think it’s just being in nature that helps the most
Melatonin (Tri Sleep): It helps me get 8 hours. It’s not always quality sleep, but I’ll take what I can get. I still wake up around 3 every night but can fall back asleep pretty quickly.

Things that I would tell people with similar sides at the beginning of their journey:

1. Calm down! Don’t make any rash decisions while your going through the initial rollercoaster (ie. job decisions, treatments, herbal remedies etc)
2. This site is a blessing and a curse. There is a lot of great info from people that have battled this syndrome for years. There is also a lot of negativity on this site which can put you further in a hole. If you’re feeling down, DO NOT come here for a pick me up.
3. Time heals. It may not be in the timeframe that you want, but as time passes some my sides have disappeared and I’ve learned to deal with others.

This is gonna get spiritual, so sorry. As a Christian, it would be counter to my beliefs to think that these medical issues are incurable. So I continue to keep the faith, control the things I can, savor the good days, and find a way to find a ray of light during the bad days.

If anyone is having suicidal thoughts and needs someone to talk to, please message me.

Good luck on your journey.