No libido = no motivation to live

  1. Where are you from (country)?
    – Eastern Europe

  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 search. I might have searched for a particular side effect (in combination with finasteride), such as “penile shrinkage”, something that doesn’t come up too often on other sites.

  3. What is your current age, height, weight?
    – 38yo, 187cm, 70kg

  4. Do you excercise regularly? If so, what type of excercise?
    – I don’t do any exercise any more because I have no motivation or energy to do so. I used to go to the gym regularly (all my life) before I stopped Finasteride - doing both cardio and weight lifting. I am still in good shape however, although I have lost a lot of muscle.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    – I eat a diet low in simple carbs, although I do eat complex carbs as well as fruit. I also eat meat.

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

  7. For how long did you take Finasteride (weeks/months/years)?
    – 8 years

  8. How old were you, and WHEN (date) did you start Finasteride?
    – I started taking Finasteride in 2008 when I was 29 years old.

  9. How old were you when you quit, and WHEN (date) did you quit?
    – I stopped taking Finasteride in 2016 when I was 37.

  10. How did you quit (cold turkey or taper off)?
    – I tapered off very fast, for about a month.

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    – I used generic Proscar (Penester by Zentiva) and divided each 5mg pill by 4.

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    – I took 1.25mg daily.

  13. How long into your use of Finasteride did you notice the onset of side effects?
    – For many years, at least 4 years, I didn’t notice any side effects, although I didn’t have an active sex life at the time. After a couple of years I knew it affected my libido and my erections (because I got improvements if I skipped a dose or two) but the effects weren’t too bad. The side effects kept getting worse, however. I knew the drug affected me negatively although I still wasn’t sure to what extent other factors, such as my age, were at play. At some point it got bad enough so I decided to quit. Things improved dramatically in the weeks after I quit and I was hopeful that they would keep improving in the following months. Instead, things got dramatically worse, much worse than they ever were while I was on the drug.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    – The effects below are what I have now, 1.5 years after I stopped the drug. Some of them I didn’t have while I was on the drug, or they were much weaker.

Put an X beside all that apply:

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections – Morning erections have recovered a bit, although they are quite weak.
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate – I had this while on the drug, not any more.
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 – This is the worst side effect of all.
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled) – This is quite profound and noticeable
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage – I have lost muscle mass but a big factor for this has been less care about my diet (i.e. lower protein intake) + no exercise
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes – I have dry skin overall and sharply increased wrinkling around the eyes though I don’t see dark circles.

Misc
Prostate pain – I occasionally feel perineum pain but I don’t know if that’s from the prostate.
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Increased hair loss – My hair has been decimated since I stopped Finasteride. Never had any hair loss whatsoever before or during Finasteride use.
Frequent urination
Lowered body temperature

Other (please explain)
– Dry skin and reduced acne. I have always had very oily skin and I still had acne up to the point I stopped taking Finasteride, even though I was already 37. After I stopped finasteride, over the following months, my skin got progressively drier and my acne disappeared. (I stopped using Benzoyl peroxide for acne completely, something I used religiously before then).
– Frequent urination. I can’t sleep a whole night without getting up to pee, something I never had to do before, including while on the drug. Also, urination is slow and with low pressure.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    – None. I took Zinc supplements for a while (for a different reason, not as an intended treatment for PFS) and I thought there was a small, temporary improvement in PFS symptoms. I have stopped taking them since then.

  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)?
    – I don’t have any blood tests.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    – For the first 6 months after I stopped Finasteride, things were getting gradually worse (after a couple of weeks of strong initial improvement). For the subsequent one year I have seen no improvement whatsoever. I am now at 1.5 years after I quit Finasteride and things have never been worse. I keep reading stories by people saying they are improving over time but this hasn’t been my experience so far. The only things that are better (relative to when I was on the drug) are the presence of morning weak erections and improved sperm quality but there is no positive trend in the erections; they just stay the same.

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    – The worst aspects of this tragedy is not the lack of sex. It is that lack of sex drive has led to a complete lack of ambition, of motivation to do anything in life, of desire to set goals for the future, to achieve, to strive for social status or recognition. It may sound a bit superficial but few people realize how important sex drive is for general motivation in life and for long-term goal setting. I know at an intellectual level that there are plenty of worthwhile things I can still do in life but I don’t feel emotionally driven to do any of them any more. I feel no desire to do anything and this has had a profound effect on my ability to function in life. It is also impossible to imagine a future where I am with a partner. I feel extremely lonely and yet dating is impossible. Even worse, I see people around me who I would normally be interested in but I am now afraid to approach, for obvious reasons. Needless to say, my self-esteem has been greatly affected which has had wide-ranging repercussions in all aspects of life. I have become listless, apathetic, meek. I hope I will have the chance to write more later.

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I would like to update my profile a year later. It has been 2.5 years since I stopped finasteride and 2 years since I got PFS. There is something I didn’t explain in my original post. I got PFS after a single dose of finasteride when I resumed taking it after being off it for 6 months after having taken it for 8 years. I resumed taking it because I was losing hair and I thought I had stopped it too abruptly so I wanted to resume and taper off more slowly.

In the past year I have deteriorated significantly on all fronts. I thought it wasn’t possible to deteriorate much but now I know that it is. My libido was at around 15-20%. Now it is barely above zero. I used to have weak morning erections, now I don’t have any. All other sexual symptoms are worse. (Except watery ejaculations - that resolved after I quit finasteride and hasn’t been an issue since).

The other serious new symptom I have is joint pain. I got that in May 2018 (2 years after stopping finasteride and 1.5 years after I got PFS). I didn’t have joint pain before then. The pain started with my left hip joint. Now my right one is also starting to hurt and so is my left knee joint. This is severe enough that it is restricting my mobility. Any exercise is out of the question. I try to minimize walking and standing so even going to the gym for exercise that doesn’t involve the legs is out of the question.

Emotional symptoms are worse than ever. A year ago I still had some hope remaining that I would improve. Hope is now almost completely gone. A new mental symptom is emotional blunting. Slurring of speech I had all along but I had not noticed it when I did the original report. On the other hand, I don’t have anxiety any more (because I don’t care about anything any more).

Testicular and perineal pain is gone (I used to have that - not any more). Penile, testicular and scrotal shrinkage appears worse or at least not improved. Hair is progressively worse. Urinary problems have not improved.

I have not undertaken any treatments nor taken much supplements. The only things I take consistently are vitamin D and selenium. I was taking zinc for a while but then stopped. My sexual symptom deterioration might have followed zinc discontinuation but I am not sure. I started zinc again recently and I will report if it has a positive effect.

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Hi mate
Sorry to hear of all the problems you have I’m gob smacked that no replied to your first post this is a sorry situation.
Could i ask have you visited a doctor or had any blood tests since your symptoms started ?
If yes would you mind sharing details of the outcome.

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Hey @Baz44uk, thanks for your sympathy! I haven’t been to any doctors and haven’t done any tests. I do not trust doctors and medicine so what’s the point. I have been hoping I would get better on my own but that hasn’t happened.

Hey great you got back to me mate
I know all about the not trusting doctors etc let’s be to the point it can be a rough and negative experience especially if you go in guns blazing screaming about PFS your going to get nowhere at all other than pointed in the direction of the nut house.
I’ve had my fare share of these bad experiences to the point that due to these experiences and the negativity on this forum regarding doctors and PFS it’s very easy to give up and say what’s the point I’ve learnt the hard way by making this very BIG mistake myself I gave up I condemned myself to silence and ignorance i used viagra to get by with the sexual issues and just basically put a brave face on in the outside world whilst dealing with major depression anxiety paranoia lack of libido lack of drive you name it life has been hell.
I had 3 failed / negative doctors appointments walking away with prescriptions for viagra rather than getting to the root cause of the REAL issues.
I’ve waited years trying all the magical protocols they did nothing i moved onto trying drugs like testosterone hcg clomid etc all self prescription lol problem is these drugs aren’t worth anything without blood tests and buying black market leaves us wide open to counterfeit non pharmaceutical mumbo jumbo.
Long story short I asked to see a urologist had blood tests and physical examination and diagnosed with low testosterone levels and hypogonadism.
I’m now just waiting for one more blood test and the results before starting TRT if all goes well fingers crossed this will get me back on track.
I know that alot of people say it doesn’t work blah blah blah but Don’t listen to others mate do your own ground work my advice is to go see a specialist explain your issues and get blood tests rule out EVERY other possible cause before you condemn yourself to a syndrome that is basically not acknowledge in the day to day medical world.
You can’t really blame average Joe doctor’s for not believing in PFS they won’t until a memo comes through stating it’s acknowledgment its a simple as that mate.
Take my advice mate get some professional help and advice as soon as possible you never know it maybe something simple that will be picked up on quicky you won’t know until you get checked out properly mate.

Their has been a couple of very positive posts this week regarding TRT so I’m very hopeful and happy that I finally seen sense in going back to the medical community it may be a fix it may not be a fix but one thing is for sure if it doesn’t work I can cross it off the list knowing that i tried and I’m not scratching my arse wondering anymore.
Your issues could be caused by anything mate let’s scrap this negative doomed attitude here and be more proactive in ruling out possible issues and cures the right way with professional guidance not arm chair science with the stab in the dark approach the odds are we will stay in the dark…
Chin up pal let’s get motivated let’s get some real answers .

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Here you go mate two positive stories from the past 48 hours

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Number 2

https://forum.propeciahelp.com/t/totally-better/8446/6

Both of these guys previous regular forum members both came back to this forum especially to pass on this information it doesn’t get more positive than this mate.
If you read the first story theirs even mention of another former member Tigershull
Now this man has my upmost respect he didn’t sit here tapping keys moaning and groaning he made a HUGE effort in telling the world of his issues caused by finasteride he’s been on TV and created his own website.
Guess what TRT has been the key reason he isn’t here now this guy had some serious side effects probably one of the worst cases I’ve come across it’s fantastic news hearing that he’s back on track living a normal happy life.
He didn’t achieve this guessing he tried all the guess work all the protocols he threw the stab in the dark approach out the window and went back to the medical world.
I know you and others reading this post have probably read many negative reports concerning TRT , DOCTORS , THE MEDICAL WORLD etc but it doesn’t mean that we all have to throw the towel in wave the white flag and give up that was their experience not ours its up to each of us to try everything possible for ourselves with as much professional guidance as possible.
Look at this way if these guys didn’t try it they wouldn’t be posting these stories of success they would still be here wondering what the hell to do next what to try next.
I’m shamefully as guilty as the next guy in previously being negative of doctors giving up on doctors and using the trial and error stab in the dark approach with supplements and black market hormone modifying drugs let me tell you its got me nowhere and ive spoken to plenty of other guys doing the same arm chair science self help protocols i.e trt without blood test etc and its all failed barely helped at all or made them worse . I’m done with this blind approach we need medical assistance blood test pharmaceutical grade drugs and professional help this is the only way to be 100% sure of anything.

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Great post Bak. I did a lot of expirementing (I.e clomid reset or sarms and literally thousands on supplements) before I bit the bullet with TRT. If you go down the TRT path give it at least 4 months because the start is bumpy at first but you will feel like a 18yo rock star around week 6) I now preach TRT to every man I meet because it saved my life. If you can get it, ask for the injectable version of T along with HCG. HCG keeps your balls working and makes you feel better. (Just say you may want children or more children and they will give you HCG).
Inject the testosterone into your fat. Google “dr crisler trt” and follow his method. The whole trt process Is just a long road to find where your sweet spot is. I’m at 130mg (43mg spread into 3 separate shots a week). Some people enjoy 2 a week better. I studied all this for 6 months before starting so if you ever have any questions, shoot me a message.

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Thanks for the encouragement, mate! I really needed it.

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What kind of benefits you get from this? Are you recovered fron sexual symptoms? Are you still on TRT?

Trt is a life long decision however if taken with HCG injections it can be stopped. Taking trt shuts down your normal testosterone factory and hcg keeps it going. If you stop trt it will take 6 weeks to be back to original baseline (many do it to have chilldren but it’s not fun going off of T as your levels will drop)

I can’t list all the benefits. Confidence. Strong erections. Mental prowess. I feel like I own the world. I get spontaneous erections like I did when I was 15. I can feel my penis more. I wake up with an erection like when I was 16. I will never stop trt. I’ve been on it over a year and it’s changed every aspect of my life.

Don’t expect one shot of testosterone to fix your problems. Do your own research. It takes weeks to even feel a difference. Amazingly you can inject a ton of T into your system and it will take weeks before you notice the change. Read my other post … if you go down the trt path, give it 6 months and educate yourself.

Most men think testosterone is the holy grail to sexual prowess. It is not. It’s actualy the ratio of estrogen to your testosterone. As you will find out on testosterone you have to watch your estrogen. Too much and you feel bad … too little estrogen and I feel like a car hit me and my penis becomes the size of a tadpole with no feeling. If your estrogen truly is low and causing your problems then you would be immediately different 2-3 weeks after a few injections. Your problem may be that your testosterone is too high to get a prescription. You could find a endocrinologist wiling to just give you HGC which will increase your estrogen a little along with T. You could also try low dose clomid (you can find all these out in the web if you go to body building websites) clomid is oral

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Found this on one of those cookie cutter HRT sites but it had studies to back up the benefits. Thought id post it

Benefits of Restoring T to Optimal Levels

  1. Improve memory - Testosterone supplementation may increase working memory in men.
    Janowsky J et al. Sex steroids modify working memory J Cogn Neurosci 2000 May;12(3):407-14

  2. Reduce Alzheimer’s Risk - Testosterone restoration may reduce the risk of Alzheimer’s Disease by preventing the production of beta amyloid precursor protein.
    Gouras GK et al. Proc Natl Acad Sci U S A 2000 Feb 1;97(3):1202-5

  3. Improve cognitive function - Testosterone levels correlate with cognitive function.
    Hormones and Behavior 1998; 33(2):85-94 and the J Clin Endocrinol Metab 1999 Oct;84(10):3681-5

  4. TRT can help alleviate depression.

  5. Testosterone restoration is more effective than antidepressants for depression
    Am J Psychiatry 157:1884, November 2000 and Androl 1992 Jul-Aug;13(4):297-304

  6. Many patients are able to stop Antidepressants after being treated with testosterone
    Geriatr Psychiatry Neurol 2000 Summer;13(2):93-101

  7. Restore lost muscle and Decrease Body fat - Testosterone increases lean muscle and decreases fat mass.
    J Endocrinol 2001 Jul;170(1):27-38

  8. Lower Risk of Heart Disease by 60% - Bringing testosterone from low normal to high normal lowers the risk for heart disease by 60%.
    The Journal of Clinical Endocrinology & Metabolism, Aug 2002. Vol. 87, No. 8 3632-3639.

  9. Increase lifespan - Low testosterone linked to long-term risk of death in relatively healthy adult men. This study is another major report linking testosterone deficiency in relatively healthy men with increased death from all causes over time.
    ENDO 2007: The Endocrine Society Research Summaries Book June 5, 2007.

  10. Enhance Sexual Performance and Libido - Two-year study of the effects of low dose testosterone on men’s libido. 82% of men noticed improvement compared to less than 10% in the control group.
    Clinical Endocrinogy and Metabolism 1997.

  11. Defy Statistics - In one of the largest studies of its kind, this study shows a decline in American men’s testosterone levels during the last 20 years. The decrease is not related to normal aging or to health and lifestyle factors known to influence testosterone levels. Testosterone concentrations dropped about 1.2% per year from 1987 to 2004, or about 17% overall. The downward trend was seen in both individuals and the entire population over time.
    Journal of Clinical Endocrinology and Metabolism, 2007. 92:196-202.

  12. Achieve Optimal Performance - Testosterone Improves Sexual Function, Mood, Muscle Strength and Body Composition Parameters in Hypogonadal Men. Subjects did not exercise, yet their lean body mass and fat mass improved. Improvement was correlated with serum level of Testosterone obtained. Study showed that these benefits were not, however, obtained with testosterone patches (which are too weak for most patients).

  13. Increase Energy - Low testosterone levels is associated with fatigue. Using testosterone restoration increases one’s sense of well being. Many patients were also able to stop using antidepressants after testosterone restoration.
    Geriatr Psychiatry Neurol 2000 Summer;13(2):93-101.

  14. Speed up healing - Testosterone restoration speeds healing and results in shortens hospital stays.

I just did some blood tests for the first time since I got PFS almost three years ago. I have low DHT, high Free Testosterone and high Progesterone.

Anyone else has similar results?

Test Measure Unit Reference
DHT 175* pg/ml 300-850
Testosteron free 29.27* pg/ml 7.0 - 22.7
Progesterone 0.783* nmol/l <0.474
17 - OH progesterone 1.17 ng/ml <1.39
Androstanediol-glucuronide 419 ng/dl 168 - 3530
Pregnenolone-17-Hydroxy 292 ng/dl 30.0 - 350
Prolactin 107.3 mIU/L M 86 - 324
LH 4.3 mIU/ml М 1.7 - 8.6
FSH 2.5 mIU/ml M 1.5 - 12.4
Testosterone 21.45 nmol/l 9.90 - 27.80
DHEA-S 149.4 µg/dl 88,9 - 427
Estradiol 80.41 pmol/l 41.40 - 159.00
Androstenedione 7.70 nmol/l М 2.1 - 10.8
SHBG 33.4 nmol/l 14.5-48.4;
FT 3 (Free Т3) 4.6 pmol/l 3.20 - 6.80
FT 4 (Free Т4) 14.37 pmol/l 12.00 - 22.00
TSH 1.26 mIU/l 0.300 - 4.200

@Dubya_B
Have a question. if the 5ar is impaired, does it allow androgens to accumulate in excess, because they cannot be converted to their further active form. For example

progesterone ---->5ar —> DHP
Free testosterone ----->5ar —> DHT

Sibelio have both of these elevated and 5ar is responsible for their convertion.

On the other hand there are many PFS people who have normal DHT levels with all the same ED symptoms.

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That’s a very good question. I would love to know the answer as well. We know that Testosterone rises when people take finasteride…

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Yes. It’s entirely possible.
As @Sibelio pointed out, a similar effect can be seen with T rising while 5-ar is being inhibited with finasteride.

I also have had tests where T was high, free T was very high, and DHEA-S was very high. Some of these results were obtained during periods when I wasn’t undertaking any sort of treatment. Stimulation of T production with SERMs resulted in a drastic increase of T and E2, while DHT actually dropped.

The thing is, there was no correlation between symptoms and hormone levels for me, and many others with this condition have noted the same. The only time I have was during an “almost recovery” lasting a day that occurred around a week after stopping a short course of clomiphene. I attribute this to a suspected decrease in androgens from high levels to normal levels.

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I am thinking of trying a DHT cream. I know I could get worse, and I will certainly lose my hair, but I am desperate and ready to try anything. I tried to find any long term success stories with DHT creams but it was not easy. Do you know if they exist?

So I think my PFS symptoms are most likely not caused by low DHT, but rather low DHT is the result of whatever is causing the PFS symptoms (such as epigentic changes of many genes but perhaps the 5a-reductase encoding gene as well).

I don’t think low DHT is the cause because during my Finasteride use my DHT levels were no doubt also very low but I did not have any PFS symptoms (except the slowly shrinking penis, which I think is a standard DHT-deprivation therapy symptom).

In other words, I don’t have much hope I will reverse my PFS symptoms by DHT supplementation but I should still probably try.

Hey Sibelio,

You HAVE to try TRT, specially the TRT cream (not gels or patches). I took accutane and had all your issues, exactly the same, although the mechanism of actions are different there are many similarities between Finasteride and Accutanne. Anyway, I started TRT (injections) about 5 years ago, with mixed results, feeling very well first few months and then not that great (but still better than pre-TRT). Along the way I learned I had to control my E2 to feel good but still was not having the results I expected and also E2 is very hard to control. I tried the Testosterone Cream a few months ago, and it was WHAT I NEEDED. At first I was scared because all my hopes were put in that cream, and the first few weeks I did not feel any different from it, but I kept trying. Then after a few weeks my libido came back, cannot say it is raging libido, but it is very good I would say maybe 9 on scale of 1-10 and it has been like that for 3 weeks. When I went to the Doctor, I had “normal” DHT, just in the middle of the range, but still no libido, and the cream shoots the DHT super high. With that high DHT levels I can have great sex. But I have also been very disciplined in avoiding masturbation and porn as I believe that helps a lot too. Anyway, there is something weird in people affected by accutane or PFS that maybe “normal” DHT levels does not cut it. Maybe we need more than high DHT levels. I have not had any hair loss and have gotten some mild acne, but I am actually HAPPY every time I see acne on my face cause I know it is the DHT working, and there is high correlation in me between acne and libido (again because the DHT). Dont worry about your hair, would you not trade your hair for a normal sex drive, energy and motivation in life? - Besides, look at the so many people that are very successful and masculine that are bald, like the rock, Jason statham, Vin Diesel, etc.

Final word of advice, be mentally prepared if this does not work, I think PFS 5ARs are much more damaged than those who took accutane, specially the one that is in the prostate that converts T to DHT there. If TRT or the cream does not work dont lose hope, I am sure they will come up with something. I can relate to your lack of motivation, for me, not having libido caused me severe depression, and even though I still keep working towards goals and improve day after day, it has been extremely difficult, I would say I have been functioning at around 30% all these years. And as of today, I am maybe 70% energy wise, but will try to start working out and eat better. I wont ever settle for anything that is not 8-9 out of 10 on energy, libido and cognitive function.

I highly recommend Defy Medical in Florida if you can afford. They are like $2,000 a year with consults, labs, medications, etc, but to me is worth every penny. There are many other clinics that may be cheaper.

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