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Where are you from (country)? England
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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
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What is your current age, height, weight? 39, 6ft, 78kg
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Do you excercise regularly? If so, what type of excercise? Weights, walking, occasional running
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What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Healthy low sugar, 40% organic
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Why did you take Finasteride (hair loss, BPH, other)? Hair loss
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For how long did you take Finasteride (weeks/months/years)? 6 months
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How old were you, and WHEN (date) did you start Finasteride? 38 April 2013
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How old were you when you quit, and WHEN (date) did you quit? 38 Oct 2013
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How did you quit (cold turkey or taper off)? Cold Turkey
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What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Propecia
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What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg
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How long into your use of Finasteride did you notice the onset of side effects? 6 months
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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
[x ] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[x ] Reduced Sperm Count / Motility
Mental
[x ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
[x ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[x ] Suicidal Thoughts
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[x ] Muscle Wastage
[ ] Muscle Weakness
[x ] Joint Pain
[x ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[x ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[x ] Other (please explain) Thin Dry Skin, particulary on hands.
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What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Healthy living, eating well, regular exercise when not too tired.
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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)? secondary hypogonad state, low normal FSH, LH, Low Testorsterone in the 300’s each of 3 tests. Other results, ie Thyroid etc. look fine. I’ll post in bloodwork at some point.
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Anything not listed in the above questions you’d like to share about your experience with Finasteride? No
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Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
I will post here very briefly my story, but mainly what i am doing about it, after spending much time researching, including a lot of time on this website, along with personal trial and error. The purpose is to show my conclusions now, so that if it works then others may benefit in some way. After i have recovered, this will also give credence to my recovery post, which will happen within 12 months of now.
My story
I am a businessman, alpha male type (like most people on here or why else would be piss around trying to keep our hair!) I have a great girlfriend and life in the south west of England which has obviously been torn apart by PFS. I won’t dwell on what i’m dealing with, because everyone here has similar nightmare life changing symptoms. We are all frightened that we may never be cured of it or get our lives back, my symptoms are above so i really want to focus on how to deal with this rather than write horror stories that frankly we are all too aware of.
How to deal with this and recover:
Obviously the most sensible route is to take what we can from those who have recovered. CDnuts and Mitch seem to be the notable and most pro-active of recovery stories i have read, however there are plenty more on these boards and elsewhere that have similarities to the recovery of cdnuts and mitch, who have also recovered or significantly mitigated their symptoms.
However, clearly no one route is correct and each person must also deal with any notable issue of their own first, or alongside any recovery plan, for example in my case i had very high cortisol which i had to sort first, not alongside.
Before i outline my plan here’s some things i noted while developing it:
1- Tempting as it is to follow exactly the plan of another, i found that some elements are so absurdly difficult to achieve that the act of doing it causes so much stress on the individual that it could only be counteractive, for example cdnuts fasted for a period of weeks, seemingly with just water. This is simply not achievable for most people. However intermittent fasting was a staple part of Mitch’s recovery (from memory), which is achievable and there is evidence to show fasting can shock an endocrine system into action.
2- I think it’s very important (for anyone who has pfs) to have a simple plan that is achievable. Many recovery plans are so complex and gruesome that i found myself terrified of the prospect of entering into it. I think it human nature when posting a recovery post to inadvertently give the impression that it was followed perfectly, when actually it is inhuman to do so over a period of many months to a couple of years.
3- I made many mistakes during the planning phase which has took me 10 months to achieve, to the point that i am happy with what i have to do now. some key errors for example are to: give in to terror, trusting doctors, trying unachievable stuff to ones detriment.
4- I have read over 25 examples of pfs sufferers resorting to TRT, none of which with sustained and significant impact. It has been a miracle cure for a brief time for a handful of people, but then pfs reverses it, probably due to some pfs induced homeostasis of androgen receptors. Mew has posted alot on adrogen resistance in pfs sufferers and the possibility of a gene that has been tripped or whatever - he may well be right and Harvard are looking into this. Hence TRT is out the window as a possibility, but the good news is that many sufferers have healed and whatever gene or resistance has been put right over time and with lifestyle changes etc. This also means there is one less option open to us which simplifies things a bit.
5- It appears we all need time, no recovery plan happens in just a few months (If you’ve still got PFS after 6 months that is)
Here’s my recovery plan, part of which i’ve already been doing, with some success - please note this is not in anyway a recovery post as i’ve not recovered, just mitigated my symptoms so far (i can now have sex every day, i’m less dizzy and brain fogged). I bloody well will recover though, here’s how, perhaps it will help others form their own, or not:
1- Fear, mental side of stuff - If you live in fight or flight mode, you will never recover from this, that is obvious. I carry a “HARC at you” mantra around with me (it is actually a northern English phrase which i have used to much success) HARK stands for “Happy” “Aggressive” “Relaxed” “Calm” and i use it in this context: Happy in that i still get to live and breathe in a peaceful and rich country and there are loads of people much worse off than all of us, Aggressive meaning that when i am dizzy and suffering from brain fog, i use this trigger to “attack and focus”, whether it be in conversation or watch tv, and believe it or not, i can mostly lift the fog by doing this, it takes practice though. Relaxed is my trigger to relax, ie walk like Barrack Obama if i’m walking, or speak more slowly and casually if i’m speaking. Calm is similar to relaxed, except that if i’m shaky that is my trigger to slow and deep breath, and/or think of my happy place, which is scuba diving with the sun and fish all around me.
The final part of fear mitigation is to not read any more stuff on the internet about pfs which is terrifying every time. I’ve got my recovery plan, and once i have posted this and looked for any replies over the next 7 days, i will not read any more about pfs for another year, which will be a habit that will no doubt be tricky to break, but i will. Hence if you want a reply to any of this, then post me within 7 days.
2-Diet and lifestyle, this is very important. I’ve read about people with pfs seriously asking whether they could carry on smoking! Like cdnuts said in his recovery post - how bad do you want it? - meaning recovery. He and Mitch, and many others who have had success, have eaten a low glycemic index diet for months and years, and this is a common denominator in most recoveries i have read. It may have nothing to do with their recoveries, but seriously, what are the chances of that? I now eat a paleo diet, no alcohol, no smoking. This is easy enough, what isn’t is going organic, because it is way too expensive and it is very stressful sourcing all organic product. I eat about 30% organic after researching a list of foods that don’t have to be organic due to not naturally needing intensive fertiliser and/or pesticides. This makes it easily achievable. Paleo is essentially gluten free by the way.
3-Exercise - This is another common denominator in recoveries all over the web, however it is obvious that common sense must prevail, for example i now only get a broken 5 hours sleep a night even if i go to bed for 12 hours, so anyone in the same boat should not be following Mitch and cdnuts recovery post to the letter, unless you wish to not get better and risk adrenal fatigue. I am and will be doing heavy resistance training up to 3 times a week for periods of about 20 minutes each time. If not feeling like it, i still do it anyway - that’s discipline. If i’m feeling totally drained, sapped of energy and dizzy, then i pass, and you should too. Over training results in low testosterone even in trained athletes, so what do you think it will do to a knackered weedy pfs sufferer. This is stuff i know, the rest is opinion and research. If you can manage the main muscle groups 3 times a week great. I also will be walking for at least 20 minutes every day.
4- Supplements, I believe these are very important. pfs had burned out many sufferers thyroids and adrenals. However taking too many every day is unachievable and breeds the feeling of being broken. I take slow release Vitamin C and zinc (in one pill) 3 times a day (zinc for testosterone and C for adrenals) as well as a multi vitamin and fish oil. This is similar to Mitch and cdnuts. I also follow to the letter cdnuts advice re testosterone herbal boosters. I made the mistake of not cycling them. I am now cycling them one of each every 7 days - so every day you dose with a different one over a week. I do the same with SHBG reducers like Avena Sative, Nettles and Muira Purma (may have spelt that wrong!) Doing this also stops you feeling the need to take about 20 pills a day, saves loads of money, and mitigates homeostasis which occurs when you take the same stuff repeatedly, which is entirely pointless.
5- PCT - Meaning Post Cycle Therapy - This is a body building term and is what those guys do after a steroid cycle which breaks the HPTA axis, effectively destroying the negative feedback loop. Most pfs sufferers have the same issue. I am currently doing a 30 day PCT using a “stack” from an australian company. The intention is to raise LH and FSH and thus testosterone, then when you stop it, hopefully your HPTA carries on working on it’s own. As a minimum, responders will get their testicles working again for a while which is important after a period of non-action.
6- SERM - If point 5 doesn’t work, then clomid is the next step, using Dr Crysler and Shippens protocol of low dose 12.mg per day or even every other day, + anti aromatose + SHBG reducer Danazole or similar. Doctors here are very reticent to give me any of that so i may have to internet order - dodgy i know. If anyone knows a reliable place to get all 3, in particular Danazole, please reply.
7- 500mg/day of epiandrosterone and androsterone - These are prohormones and are precursors to DHT. This is a cycle taken by CDnuts. I have ordered epiandrosterone and may do the same but not sure yet as i need to think this through. It is dodgy taking prohormones as in general you play with fire doing so, but cdnuts may well have a point that we pfs sufferers need to replenish this area and kick start it again. I may, i may not do this.
I should say that before i started most of the above, i had to take care of cortisol which was way high. You are never going to have the correct hormone balance when cortisol is high and i won’t lie, it was tough to get it down, but it is now perfect and i can move on. If you are working on a recovery plan, you should look at your bloods and get medical advice on how to rectify any areas that are obviously wrong like thyroid, cortisol etc. but unless you are talking to doctors/ urologists etc. that have experience of treating many pfs guys with success, then don’t take what they say for granted. Do your own research too as they often don’t have a clue about this condition.
OK guys, this is what i am doing for the next 12 months. I have written it as a reference point for me, but also for any of you who may find it helpful. I’ve got alot of info from this website, so i felt morally obligated to put some back.
By the way, after reading it back, it makes me sound like a superhero, strong and resilient etc. who is batting off pfs like it’s nothing. I’m not, this is the worst period of my life by far, i’m terrified too guys, but i am dealing with it, taking it on. Just like Cdnuts and Mitch, who are my current rolemodels, i will get to the other side. I bet they were terrified too, just like everyone else.
If you are suffering too, all the very best to you my friends. I will reply for 7 days, then i’m gone for 12 months. I won’t be fighting it by the way, it’s a mistake to think like that. I will be living my life to the fullest my condition will allow while doing all this stuff so that i keep getting better. Your body follows your mind, if you’re battling this, remember that and stop battling. Take care - English.