On my way to recovery (70-80% so far)

  1. Where are you from (country)? USA
  2. How did you find this forum (Google search - Looking for recovery stories)
  3. What is your current age, height, weight? 37, 5ft 10in, 150 lbs.
  4. Do you excercise regularly? If so, what type of excercise? yes, twice a day now. Weightlift 4 times per week, heavy run 2 times per week, one day light cardio.
  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Clean eats/Paleo primarily with some small concessions (Quinoa/Brown Rice)
  6. Why did you take Finasteride (hair loss, BPH, other)? Hair loss prevention
  7. For how long did you take Finasteride (weeks/months/years)? Took less than 6 months of pills over approximately 9 months (kept forgetting to take it)
  8. How old were you, and WHEN (date) did you start Finasteride? 37
  9. How old were you when you quit, and WHEN (date) did you quit? 37
  10. How did you quit (cold turkey or taper off)? Cold Turkey
  11. What type of Finasteride did you use – Finasteride
  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg every day, but often forgot to take, especially towards the end.
  13. How long into your use of Finasteride did you notice the onset of side effects? 9 months, triggered me stopping or perhaps me forgetting to take it so much at the end triggered the side effects, unsure.
  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?I am listing all side effects even those that aren’t present currently as they have been returning from time to time or I am not yet convinced I am in the clear from anything.

Put an X beside all that apply:

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

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

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
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes
Nerve pain (forearms and calves primarily)
Muscle twitching

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Increased hair loss
Frequent urination
Lowered body temperature
Loss of appetite/enjoyment of food

Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? No formal treatments, to be discussed below.
  2. 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)? None.
  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? No
  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

My story and RECOVERY:

I am an early sufferer, so I don’t know what use my story will be but if it helps anyone it will be worth posting. Also, I’m hopeful others may have some tips to help me get better.

My first side effects while still taking the drug was severe Muscle twitching, anxiety, loss of appetite, loss of enjoyment, and depression (constant horrible thoughts). Also, looking back I also had a symptom where when I was about to fall asleep a sudden wave of anxiety would instantly wake me along with a deep breath, after which I could typically fall asleep normally. This happened 1-2 months nightly leading up to my crash.

The depression and anxiety were absolutely crippling initially and continued for about 2 weeks relentlessly after which I seemed to get better for a period of 1-2 weeks. During this 2nd time frame I was admitted to the ER for shortness of breath and nerve pain on one side of my body (forearm and calf on right side). I now see that this was likely a panic attack. It was around this time I realized what was going on and the anxiety returned even worse than before along with depression and horrible thoughts at the same level. I moved my office outside and the only thing that made me feel even remotely better was exercise and being in the sun. I spent most waking hours in direct sunlight and walking/jogging when I just couldn’t take it anymore. During this time period, existence was pain. I just looked forward to sleep every night and all I could do was to try and make it through each day. It was during this timeframe that I started my no processed foods/no sugar/clean eats/paleo diet at the same time and started drinking a lot more water. During this 1-2 week period my appetite was nonexistent and I had to force food down using water. I started drinking a spinach/fresh fruit smoothie every morning with flax seed/chia seeds and collagen powder (mostly for glycine). This was something easy for me to eat and just a way to get nutrition. I also started an intense exercise regimen about this time since it was really the only thing that kept me going, with A LOT of time in the sun. I lost 20 lbs. within like 10 days.

I also started a regimen of edging during this time period? I read that masturbation could cause temporary loss in receptor activity but also read that sexual activity could boost testosterone, so I just thought what the hell? I did have waves where it was very difficult to get an erection, so this wasn’t always easy but I did a schedule twice a day. I would edge myself almost to orgasm then let myself cool down all the way then back up 3 times in the morning and 3 times at night. I also took cold showers, about 3 per day and always immediately prior to this. Otherwise I have been entirely abstinent, no orgasms.

So now we’re about 3 weeks to month in and I started getting severe emotional blunting which occurs for around 1 week and then I start feeling like I’m recovering a little bit again (depression mostly gone, anxiety lessening, no emotional blunting) and then absolute terrifying insomnia sets in. I started waking up earlier and earlier the days leading up to this and then I simply had my ability to sleep removed. I didn’t sleep for 4 days straight initially and when I finally slept it wasn’t like normal sleep, it was more like I just lost track of time for an hour or two at a time. This persisted for about 2 weeks with another 4 day stretch of essentially no sleep mixed in before I got SOME reprieve.

During this time period, I stuck with my diet, cold shower/edging, and exercise regimen no matter how I felt. Anxiety and depression continued to come back in waves and insomnia slowly got slightly better 2-3 hours sleep standard with days of 4-5 hours or more (always very interrupted sleep). Appetite also started to return and seemed to strongly coincide with how I felt mentally and also with the quality of my sleep. Fast forward a few more weeks and I actually feel 90% normal, I get a few full nights sleep mixed in with a few nights of 4-5 hour or 6-7 hours. Anxiety and restless sleep are really my only symptoms for about a 2 week period. I feel so good that I falter and break my regimen. I cheated on my diet, quit my edging routine, I had sex twice on back to back days, and also broke my sleep routine. I had always tried to go to bed 9-10PM and keep a very set schedule, but stayed up late a few nights and even went to sleep at my parents house and broke routine. After this the following 1.5 weeks was terrible, but I went right back to my normal routine and the ship is mostly righted at this point except for the insomnia.

Here’s my routine and where I am currently (approximately 2 months in):

Exercise: Daily - Wake up 7:30AM and run/walk 2-3 miles depending how I feel. Shirt off always, full sun. 4 days a week of heavy lifting, rotating muscle groups - immediately after my morning jog. HIIT Sprint training twice a week when I’m not lifting, one day of light cardio. Afternoon around 5-6PM - I walk/jog another 1-2 miles when I’m not doing HIIT.

Diet: Somewhat of a fasting diet as I generally eat all my food between 10AM and 7PM. No caffeine, no alcohol, no sugar, no processed food, everything organic, handmade or fresh.

Breakfast Daily 9-10AM - 2 boiled eggs and fresh blended smoothie (Collagen powder, chia seeds, flax seed, spinach, pineapple, 1 banana, and grapes/watermelon/blueberries/blackberries/apples) Last ingredient is really whatever fruit is going bad I will freeze and use it in my smoothies. I also put 1/2 tsp tumeric and 1/4 tsp ginger powder.

Lunch - 1PM Clean eats/Paleo rotating. Carbs come entirely from potato/squash/corn/quinoa and brown rice occasionally. I eat a lot of fish and fresh vegetables/fruits.

Dinner - 6PM Clean eats/Paleo rotating. Carbs come entirely from potato/squash/corn/quinoa and brown rice occasionally. I eat a lot of fish and fresh vegetables/fruits. I force myself to eat a lot here as much as possible even if my appetite is lacking.

Throughout Day - I eat pumpkin seeds and pistachios throughout the day for magnesium. I try to eat quite a lot to get daily recommended value. I also drink lots of water up until dinner ( to avoid peeing at night) and Saffron Tea (3-4 cups early). I drink 1 cup chrysanthemum tea before sleeping.

Other: I still do my edging routine and am otherwise abstinent. I take cold showers throughout the day. I listen to comedy and things I enjoy (or used to enjoy) always when exercising etc. even when I don’t want to which is very often.

Current Status: I am past almost every symptom except anxiety and insomnia for the most part although they do come back in small waves occasionally. Anxiety comes in small waves as well, but seems less and less as days go on and I have some days of almost 100% reprieve. Insomnia is still rough though. Minimum now seems to be 2-3 hours which can go on for a full week at which point my body seems to give in and I’ll get a decent night’s sleep. Some days are better than others but this symptom is the worst by far.

I think my routine helps, although my only evidence is my recovery to date and the complete crash after I stopped for 1-2 days. I hope this helps someone, does anybody else have any similar remaining symptoms and tips to surmount them?

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Looks like a good routine to me.

Although I would drop the flax seeds. If they are not crushed your probably fine (health wise) but if they’re the crushed sort you should most def not eat them.

I’m Sweden they had to stop selling crushed flax seeds due to health concerns…

I’d replace them with psyllium if I were you.

It’s only been 2 months for you so it’s likely you will keep getting better.

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I’ll second @Cbrandel‘s endorsement and warning re the flax seeds (there are better fiber/anti-androgen supplements to experiment with if that’s your thing). Also, the exercise regimen is a bit advanced for many PFS sufferers…but it’s a great one to work your way up to, being very mindful of your body.

Why do you think you have PFS? Looks like just temporary side effects of propecia. PFS is when they don’t go away but yours are going away, even very quickly since it looks like only been off the drug for a short time. Also, what is the point of edging and doing such extremely taxing quantities of exercise?

With any luck I don’t have PFS but I have symptoms that have not yet gone away and the symptoms of this are awful enough that I will do ANYTHING to keep from going back to that dark place as much as possible. The exercise is the only thing that gets me through the day many times still. The anxiety is so intense I can’t sit still. I can’t even relax enough to sit down for a meal, I have to constantly be moving and the exercise is the only thing that remotely helps or at least distracts me. Plus many recovery stories I have read include intense exercise as a component. I’ve been keeping a sleep log and I seem to sleep slightly better when I exercise heavily. The edging is also related to some recovery stories I’ve read related to masturbation frequency.

Whether I’m on my way to full recovery or not this seems to be working, so I’ll stick with it as long as it takes to either fully recover or until I see evidence that this is no longer yielding progress.

As an update, my sleep disturbances have continued to lessen on average, but I am still having problems with anxiety and depression.

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Warning for anyone here. Saffron tea seems to help me, but my wife found that it gave her severe depression. The depression resolved itself immediately after she stopped drinking it and comes back if she drinks it, so it’s almost 100% confirmed as the cause. Just beware of this possibility if you try drinking it.

Despite this bad possible side effect, it seems to validate that Saffron tea is absolutely doing something to your brain chemistry. Considering this, it seems something that might possibly help those suffering from the mental side effects of this disease.

Also, I’ve switched to lavender tea in the evenings and could be nothing, but from my sleep log it seems like it possibly has some correlation to better sleep quality and mood boost.

DO NOT use the Saffron tea. Or if you do try it, try it in very small dose, like 1 stigma. I now believe this to have been inhibiting my recovery and not helping and may even be responsible for subsequent crashes.

My anxiety and depression have mostly passed entirely now although anxiety does return in small waves occasionally. My sleep symptoms were also resolved and I finally felt great for about 2 weeks, basically 100%. I again went off my routine slowly and things continued to go well for about 1 week when I had a small crash of insomnia. I went from sleeping normally to 5-6 hours per night. I stuck with most of my routine still but not as strict on diet. This 5-6 hours continued for about 1 week and then I crashed to sleepless nights again. All other symptoms are still gone but I can barely get any sleep. I started to recover slightly again after a few days and got one night of mostly full sleep although very interrupted and then crashed again. I think I traced the crashes to occur days after I drank saffron tea.

I’ve now stopped the saffron tea entirely but am keeping the rest of my routine. Last night was first night post saffron completely and I only got 1-2 hours of sleep. This symptom is essentially the last remaining and yet most direct threat to my livelihood for me and my family. Does anyone have any tips to overcome or manage the debilitating insomnia?

Last week I had 4 entirely sleepless nights out of 7. The 3 where I got sleep we’re not that great either. I started taking Glycine 1-2 hours before bed and a magnesium supplement at dinner. I also took L-Theanine in the morning and then 3 mg time release melatonin right before sleep. This helped me get about 3 hours right off the bat from 9:30PM to 12:30 or 1AM. I then always wake up and take another 1-3 mg melatonin and can get some additional broken sleep. Last night I also ate a banana when I awoke and I think I logged around 6 hours although very interrupted outside of the initial 3 hours. This is the best I’ve slept in months. I have gotten a minimum of four hours for 4 days straight now. I have been following a post by someone names “Jezza” who has made a full recovery as their symptoms sound identical to mine. I’m following their recovery protocol and it seems to be helping me significantly.

I also cut out my exercise for two days as Jezza mentioned having excercise intolerance, but that brought the anxiety problems back full force whereas it had not been a real problem for at least a month. It was an absolutely awful two days. I started working out heavily again yesterday and the anxiety became very manageable again. So, not every recovery protocol seems one size fits all. You have to find out what works for you.

Have been trying to get my Primary Doctor to help me with this and with referrals and he referred me to a psychiatrist and said he didn’t know any other way to help me. For those out there without any external help, don’t be discouraged. I’ve found lots of ideas on this forum that have seemed to help me.

I have additional supplements I may try soon if I hit a plateau in recovery and will report back how I progress.

Update. I cut out all supplementation except magnesium bisglycinate 200mg and take that about 1-2 hours before sleep. I still excercise but not as heavily as before. Minimum I run two miles, and will also mix in HIIT or weight lifting. I also cut out collagen from my morning smoothie and my melatonin intake drastically down to 0.5mg and that seems to have helped a lot. As soon as I take that I’m asleep within 20 minutes now. I have the kind where you put under your tongue and let it dissolve. I also eat a small snack of gluten-free oats and banana before sleep and it seems to help with sleep quality. I feel I have deep restorative sleep now and wake up only once or twice. Once always somewhere from 2:30 to 4AM and then again around 6-7 when I usually wake up for good but have been able to sleep an additional hour once.

I have been having this sleep schedule for 5 days straight now although I am waking up earlier and earlier which makes me fear for a relapse as this is what happened before previous crashes.

Immediately prior to being able to sleep this well I had intense hot flashes for 2-3 days, also cold genitals. These symptoms subsided and after that my sleep returned. I still have light hot flashes occasionally but they seem to be going away. My anxiety and stress intolerance are still very present and I still have some recurring light depression symptoms despite the sleep. All of these symptoms come and go. There are times when they’re completely gone, but more often that not at least one of them is there. My hope is that I can at least keep the sleep going which I hope will accelerate my recovery.