Joining you at this strange frontier


#1
  1. Where are you from (country)? UK, if it still is…not reading the news since this happened

  2. 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

  3. What is your current age, height, weight?
    29, 6"2, 50.3kg - I’m in trouble

  4. Do you excercise regularly? If so, what type of excercise?
    walks before, cannot presently.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    previously vegetarian plus fish, now basically a weird boring diet pieced together from suggestions on here. Dropped gluten, don’t know if it’s helped anything. Organic where possible. Avoiding much sugar. No caffeine or alcohol.

  6. Why did you take Finasteride (hair loss, BPH, other)? hair loss.

  7. For how long did you take Finasteride (weeks/months/years)? 3 days, far apart…

  8. How old were you, and WHEN (date) did you start Finasteride? 2 days in 2011, 1 day in May 2017

  9. How old were you when you quit, and WHEN (date) did you quit? 29

  10. How did you quit (cold turkey or taper off)? cold turkey

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? accord finasteride 1mg (quarter dose)

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg twice in 2011. 0.25mg once in may 2017

  13. How long into your use of Finasteride did you notice the onset of side effects? 20 minutes after

  14. 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
[x ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
Reduced Ejaculate
Inability to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
[x ] 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
[x ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
[x ] Muscle Wastage
[x ] Muscle Weakness
[x ] Joint Pain
[x ] Dry / Dark Circles under eyes

Misc
[x ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[x ] Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[x ] Increased hair loss
[x ] Frequent urination
[x ] Lowered body temperature

[x ] Other (please explain)

penis pain, pain in finger bones, foot arches, teeth, spine. Strange pressure/weak burning feeling in back of head. Derealisation, depersonalisation, anhedonia. Insomnia, loss of deep sleep. Jaw tremor. Walking coordination feels off. Feel as though I’m not automatically breathing correctly. Waking up not breathing. Hot feet.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

acetyl l carnitine, mag glycinate, vitamin d, b complex, fish oil, vitamin c, l-glutamine, l-arginine

  1. 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)?

I have had a lot of blood tests pre the recent use/crash. not many after yet, gp said test/est were ‘fine’, 4 potassium tests in a week - was bouncing between low and high despite same foods daily.

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

  2. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

Well first of all I’ll say I know the characters here quite well now, having read the forum from back to front over the past months. During this time I hoped this affliction would run its course and I’d never have to see the words “cdnuts protocol” again, but here I am. I took fin in 2011 twice before abandoning it. I felt some flushing that passed and a significant libido boost. My girlfriend was happy about that, but I decided to abandon it as I thought it was a bit weird and my hair wasn’t really falling out much anyway. I didn’t have a crash, ed, or mental issues at this point, but in the months after I began feeling fatigued, very nauseated, and my digestion permanently changed to being substantial, poorly digested and pale. I rapidly lost over 10kg, leading to a long series of investigations and attempts to remedy, including intensive NG feeding with no result. Eventually my weight stabilised at around 54kg. Although my health was a struggle, the many wonderful people around me, my passions and interests gave me an enviable life that I now long for so much. After my recent worsening, my partner checked her diary and emails and the original link to finasteride dawned on me. Regrettably, I had never considered the association before this.

I had a nagging self consciousness. I have long thick hair, and loss wasn’t even noticeable to others (it’s shed more since…), but I decided to try fin again, having read hair loss forums and watched a nice guy from here in England, quite skinny like myself (good sign I thought…), explaining how fin changed his life positively on YouTube. I asked my GP, looked at the safety studies, and briefly saw the suggestion from the recent harvard study that nothing much was found in the symptomatic past users…Yeah, I know. I hadn’t read the stories here; hearing of the digestion issue that most suffer would have prevented me from destroying my life.

I took a single 0.25mg dose (quarter of an accord generic 1mg pill) on 18/05/2017 in the evening. Within twenty minutes I had palpitations and breathlessness. My face was very oily. I felt electric shock sensations in my brain, and my muscles twitched uncontrollably. I felt physically disconnected from my genitals. I resolved to not take it again and assumed the reaction would pass. Night sweats began, which lessened but have recently come back. I experienced total insomnia, which has now improved to 4 hours light sleep. I sometimes wake up struggling for breath. A constant strange pressure/weak pain in the back of my head/top of my neck has persisted since. It sometimes fades off but it’s there most of the time.

Two days after, I developed severe mental symptoms, notably cognitive impairment, suicidal depression and physical anxiety, which I have never experienced. I felt what I can only describe as my soul draining away. I lost connection to reality and experienced complete anhedonia, the latter having not improved. I am still cognitively impaired, often struggling to follow conversations. I can’t correctly perceive speed and time. I have always been quite intelligent, but now struggle with tasks like online banking. However I am starting to get times of improved clarity in which I can manage stuff like this a little better. I am unable to continue my work or my life in any normal capacity. I cannot gain pleasure from listening to music (a huge part of my life), watching television, playing games, and no longer read or follow current affairs (previously a bit of an obsession). My ability to have a connection to and enjoyment of life has disappeared. Memories of my life are reduced and my short term memory is extremely poor. Half the time my head feels hung-over and completely devoid of “me” as a person. I cannot feel positive emotion or rewarding feelings, from being hugged to pleasant weather. This is extraordinarily hard to come to terms with and does not vary even in moments in which the depression lifts.

Physically I am unfortunately deteriorating quite rapidly. I have crippling fatigue to the point I cannot always prepare my own food and have lost over 4kg since my recent reaction to finasteride. I now weigh 50.3kg (height 6"2) after years of stability in weight with continued good caloric intake. I have ed with some varying libido, though it’s trending down. My prostate is extremely painful. There is a near constant burning pain in my penis, which has begun changing appearance and reducing in size with a leftwards bend. Quite hard to endure psychologically. Veins have become prominently visible all over my body. My teeth, fingers and feet are hurting, my jaw has a tremor and my muscles twitch. On GP examination, my right leg reflexes don’t respond at all. I’ve completely lost the sensation of thirst and am reminded regularly to drink. I experience sudden urgency for urination. My digestion has deteriorated severely, barely digested if at all with seemingly more liquid than I am drinking. This is agonising.

I’ve got a lot of test results from the years after the first dose, including a 23andme and an MRI showing a slightly misshapen pituitary. Hoping to have another MRI somehow to see if anything has changed. I’m concerned about physical damage (brain and nervous system particularly) from fin considering how my reflexes, walking gait, digestion and automatic breathing seem to have been affected (my impulse to breathe is weak and I feel like I have to keep taking over). A frightening thought, but as you all know this is a very frightening drug and it’s hard to overstate its disastrous effects. I have a bad feeling I won’t last much longer in this condition due to the weight loss and what seem to be autonomic problems. Everything occurring is putting enormous strain on what’s left of my body. The deep depression seems to be less continuous (cried for most of these first two months), leaving a calmer desire to go back in time, or for it all to be over without much more suffering. I feel, as awor once said (I hope he’s ok - what a remarkable asset to this struggle), that as I am coming to understand the enormity of the problem, I am considering terminating my life. I am soon being seen for psychological support but I have little faith they will be able to understand nor help…When everything that makes you yourself - human even - and gives you interest in anything is stripped away, what do you focus on? I feel like I’m an inanimate object. Input hits my brain, but it doesn’t care or isn’t even there to. I intensely loved art, history and culture and now don’t feel any difference between art and a blank wall, or hearing emotive music and the sound of the road outside. This is besides the pain and debilitation of my physical situation. The first time they saw me i was prescribed mirtazapine but I am loathe to take any drug presently for fear of worsening matters.

I had sex once since the crash which was ok though unusually brief. Semen was yellow and the orgasm sensation lagged. The day after I felt really good mentally, almost free of the anhedonia. Was listening to music, feeling excited, looking at stuff I might want to buy online etc….Think it’s the only time a temporary return to a degree of mental normalcy that has happened. A day later took a supplement called ultimate bone support by solgar, and a few hours later I was no longer feeling better. I had a returning wave of anxiety and depression at the same time as my penis shrank suddenly and developed a dark vein. That has seemed to recover a bit but I presume this was caused by orgasm and not the supplement. Kind of afraid of either thing now.

I’ve bought a lot of supplements but have only tried the ones listed thus far. If anyone has any advice, particularly anything re the breathing issue, digestion, penile pain or anhedonia, that would be appreciated. I am trying to get relevant bloods done but the NHS is slow moving.

I’m pleased (interpersonally, if not situationally) to meet you all. You’re extraordinarily brave. This condition is incomprehensible. The curses of Greek myth are the only weak comparison I can think of, and they at least got some recognition. I feel like I’ve been set upon by an invisible hydra, failing to address one viscous head before two more can spring up.

I do believe that, with the inevitable downside of some bickering and evangelism, this forum has got an impressive amount of interesting observations, determination and knowledge that makes it an incredible resource. I have been thinking quite regularly about supporting the science in attempts to understand this condition. I do believe that studies and scientific findings will be the only reasonable chance of a way out of this. I realise the likelihood of a novel treatment being developed is low, but perhaps once the curtain is pulled back on what has happened to us, near future advances in wider medicine could well be tailored and applied to the problem effectively. I also believe there must be something victims can do in addition to donations to the foundation, but I’m not yet sure if my health will stabilise enough to be able to pursue such a course regardless. Perhaps an initial useful endeavour I could possibly pursue would be a web page and tool with simple effective design that presents easy to read data from collation of the vast amount of observations in this and other forums per topic eg action, food, substance, treatment, medicine or hormone? Graphs could be generated from the data on how many felt strong or minor benefits from the thing in question temporarily or permanently, likewise with causing a worsening of the condition. Just a thought that I’m sure someone has had before. It does seem like such a thing would be useful to both sufferers and perhaps researchers as a rapid repository of anecdotal data if it doesn’t already exist.

I would be grateful for advice and any feedback. I wish all of us the good luck we deserve.


Thinking about starting again on 0.25mg
Soya is helping massively but why?
#2

Your symptoms are a complete match with the symptoms of a malabsorption (SIBO).


#3

^no they’re not.

So I had an endocrinology appointment yesterday. He was aware of the finasteride disease, and had seen other patients with problems from finasteride though not as severely. He reviewed my blood results - I had my GP do a lot of tests, and I also had a hormonal panel from several years pre pfs. My testosterone was 13 pre PFS, 13 a month after my crash, and had climbed to 18 two months later. My dhea is also elevated above range. This is from melcangi’s observations published this year:

So my results are very much in line with the academic findings regarding steroidogenesis. He was aware of the current situation regarding treatment for PFS (ie there isnt any) and would not suggest treatment based on my good levels of T and pituitary hormones, beyond talking therapy in hopes of helping me cope.


#4

Aforementioned blood results from September, four months post crash. 2 months in my t was 13, as pre pfs.

Oestradiol 78pmol (<160)
Testosterone 18.9 (8.4 - 28.7) (had been 13 two months earlier and also five years previously pre pfs).
Androstenedione 9.5 (3-8)
Prolactin
FSH 2.2 (1-12)
LH 2.9 (0.6 - 13.0)
Progesterone <1 nmol/L
DHEAS 15.3 (1.7-12.6)
Shbg 37.1 (14-78)
Prolactin 247 (70-410)


#5

Once again the crash of pfs and ensuing madness and sickness that follows is not related to testosterone or dropping levels…Mine went up as well and never changed much until I got on clomid and it doubled…


#7

Very 8nteresting…Hopd more light is shed in the Baylor study and people can get proper help instead if killing themselves with bro science…


#8

Wow, what a heartbreaking account to hear. Experiences like this really make me want to do something more. The irony of it all is I asked my sister who is a Pharmacist that graduated from University of Southern CA (prestigious Pharm D school) and she told me not to worry about PFS after I came to her scared shitless about what might happen to me in a couple weeks. She directed me to article from NCBI which stated nothing even remotely close to the symptoms (more like permanent side effects) of those on this site. Not sure if she was trying to reassure me, but I can’t help but draw generalizations of how rigged the entire system is. Nobody should have to go through what you’re going through and I can’t help but wonder if you’re making any progress?


#9

Thank you Pete, it’s kind of you to say, and I agree; this isn’t an experience I knew was possible and no one deserves it. Do bear in mind my case is atypically severe within PFS. By the time I crashed I had no clue what PFS entailed (I thought by taking it I had a slight risk of erectile dysfunction after prolonged use), so my personal thought when I see people worrying ahead of time about what might happen is that it’s a good sign for said person. My experience was like having my soul sucked out and acid poured into my brain, and very quickly. Physical deterioration onset in the following months, along with ongoing severe pain, which coincided with a near doubling of my testosterone to 23 and two thirds drop in my LH to 1.3, which doesn’t make sense in a conventional interpretation. I am definitely a “horror story”, so I think it’s important I point out I’m on the unusual end of PFS. I often feel hesitant to post the extent of what I go through because I know it upsets milder cases to see, but I feel I should as this is squarely what finasteride has done to me so is important to record. What I think is interesting about my case is that I had aforementioned significant digestive symptoms for many years that were extensively investigated by two of the best professors in the country. I had not one single issue mentally or sexually until I took finasteride again, so I have experience of being a very mild case and now at the extreme end of severity.

To answer your question: Well, I’ve experienced progress in some areas and deterioration in others but in terms of overall quality of life, very little. When I was crashed, which lasted for months, I was indescribably derealised. I didn’t know who or where I was and suffered constant extreme anxiety. The anxiety has improved greatly though I still experience panic attacks. One of my most threatening symptoms is my autonomic breathing dropping out and that unfortunately still happens, but for shorter durations. My sleep has improved to about 3 hours a night (from zero) but more sleep actually tends to make me worse so I’m not too focused on that. I am now able to pass for normal in short conversations sometimes, like at shops. I could barely navigate the house at first. When I crashed I had bad pain in my teeth that has lessened. I also have burning sensations in my brain stem and the back of my head far less often now. I can go for walks, and I have my ability to process information back, albeit very slowed. I am sometimes able to performatively play certain videogames but sadly I don’t enjoy them as i did. I have a very severe and unwavering anhedonia so I’ve lost my interests. I cannot read fiction anymore, but I can at least listen to music at some points now, which I could not for a very long time. Sexually, I have no libido. I’ve suffered tissue loss in personal areas and experience constant severe pain, so I don’t even know if i have numbness. If i do orgasm I experience symptomatic worsening. I have increased hair loss and my skin is very dry a lot of the time. Initially I tried hundreds of pounds of supplements and random ideas I’d seen around with either worsening or nothing as a result. I continue to make dietary changes but nothing has made a substantial difference to me. I had over the years tried a vast amount when I had solely digestive symptoms under the direction of many dietitians, and they never did then either.

My general condition isn’t very stable, varying between bad and inoperable with brain fog and fatigue, at which point i just have to lay down and stare at a wall. I still don’t really perceive time right - it’s all been one long day. My memories of my life are extremely limited. I don’t have access to feelings of care for my family or friends, and I haven’t been able to maintain my many previous friendships due to that combined with all my other symptoms. I don’t feel like the same person. I was motivated and passionate, and now I’m empty. A few of my close friends were understanding and they have stuck with me; one is very supportive and informed regarding PFS and that has been very helpful. I did lose the love of my life and partner of ten years. All I’d want is to see her again with my own eyes and be there for her. Though if I was cured tomorrow I’d probably like to have some wine, too.

However, I do feel I have made progress in other ways. I have always been quite intellectually capable and I have access to the resources of a very prestigious university, so I have spent the past year (since my cognition improved enough) educating myself in biological science and epigenetics. In addition I completed courses on neurotransmission, genomics, and pharmacology online. I also felt strongly that there was much to be done for the issue at the community level. I put hundreds of hours into rebuilding this site with @awor who I am deeply grateful to. I am very pleased to see the community revitalised, and in the main being supportive and treating each other with kindness despite their varying conditions and problems following use of these anti-androgenic substances. Currently I am involved behind the scenes with many projects towards the scientific advancement of our novel condition and work hard to do everything I can while I can to help. So while I do not have a quality of life to speak of, I do feel I have a purpose.


#10

Man, bad things happen to good people, and @axolotl you’re a prime example. Great post and thank you and @awor and many other dedicated folks for putting the rest of us on your backs. I hope you know that although this issue hasn’t been solved, this community has saved many lives. Thanks for keeping it alive.


#11

Wow I can’t even fathom 95% of what I just read. It enrages me that this is happening to people like yourself who are quite obviously well educated and had a good life prior to consuming this shit poison. It gives me solace knowing that you have come to find purpose in this life, but I understand that it must feel like an eternal hell longing to get your old life back. I just want you to know that you have already made a difference in my own recovery and I appreciate what you do for this community. This disease will only be solved at the biogenetic level and it doesn’t really seem like the outside world is going to help make that happen, people like you and “tryingnottoworry” will be instrumental in that research. Thank you again, and again. Even if I am not yet suffering with PFS, I am a male and I can sympathize with all of the males on this site having consumed this shit, and I am here for the cause. People keep telling me to stop worrying and get off the forums “you’re gonna drive yourself crazy”, but honestly I am thankful to have people like you here to truly educate those like me who had no idea of the after effects of finasteride. Additionally, I would like to be able to foresee and identify any PFS symptoms right when they come (if they come) so thats why your posts really help newcomers like me out.

I just want to say, get ready for an influx of new members in this community. With all of the online marketing of websites like Keeps and Hims on social media, they brad finasteride to look like a vitamin at worse, like candy at best. This is how I bought into the medication, and I wish I had done my research. I would have never taken that first pill, just like everyone else on here. I feel like a great place to start for anyone looking to make change is to take these fuckers down and not allow them to advertise on social platforms.

Thanks again acolotl


#12

I’ve been here for around six years and have read pretty much the whole forum back to front several times. Your crash really is the worst I have come across, axolotl. What this drug can do really never ceases to amaze me.

I am glad you have found a new purpose getting involved in this community and playing a huge part. With Awor’s return and your combined efforts the community is striving again. This forum has come back to life, the crossover with other patient groups is promising, new projects are on the way and overall there seems to be a good spirit. This has been absent for quite some time. You can be proud of yourself. Without you this community would continue to go down the abyss. Thank you!

Now it’s on all of us to keep the ball rolling! We will not stop before we get our lifes back!


#13

Thank you, that means a lot. It is completely astonishing, and to be honest it never truly sinks in. I am sure there is something hugely significant to wider medical understanding at the crux of this novel problem, and I do believe we can achieve great things together.

Thanks for your optimism and support guys.


#14

I only took it once and all my symptoms are mild. I was so tempted to try it again just to see if I could get better because a lot of my problems like digestive issues didn’t occur until months after I quit but the uncertainty of taking it again is the scariest part.


#15

You have all my symptoms, we are really the worst. Have you got any improvement of some symptoms or are they still all present?