An new japanese PFS patient. In japan, the existence of PFS is completely hidden

Member Stories
#1

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)?
Tokyo, Japan

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?
35years old , 171cm, 62kg

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.)?
0.25mg/day

What condition was being treated with the drug?
A couple months into treatment, I noticed leakag and orchialgia

For how long did you take the drug (weeks/months/years)?
about 40days

Date when you started the drug?
13. 5(May). 2023

Date when you quit the drug?
23. 6(June). 2023

Age when you quit?
35

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

How long into your usage did you notice the onset of side effects?
about 30days

What side effects did you experience that have yet to resolve since discontinuation?

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
[ 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
[x] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ x] 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
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[x] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[ ] Joint Pain
[x] Dry / Dark Circles under eyes

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

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
nothing

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)?

Anything not listed in the above questions you’d like to share about your experience?
Accidentaly, I took a blood test at 16 June, under the treatment of fin, the score of “CK” was very high(864). (I have experienced muscular pain on whole body.)

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

Hello. pardon my poor English.

I am a japanese man, living in Tokyo, 35 years old. I am studying jurisprudent and philosophy at university.

Since 13 May 2023 (about three months ago), I took finasteride 0.25mg/day for a month (until 23 June). Before taking it, I had researched japanese medical articles about Finasteride exhaustively by using data base of University. But there is not a single word of PFS. So I thought it safety and took it and then halted(stppped). last one week during the treatment(taking finasteride), I suffered from leakage, then I discontinue treatment. Accidentally, I took a blood test at 16 June, the score of “CK” was very high(864). (I have experienced muscular pain on whole body.) After discontinuation, such symptoms almost got well in few days.

But, one month and a half had passed since discontinuation, I got suffered from sexual diesease(Erectile dysfunction and impotence, Decrease or complete loss of sex drive, Orgasm disorders such as sexual anhedonia and loss of pleasurable orgasm, Ejaculatory disorders), and, being dying exhausted, a terrible headache, and had lost emotion. It was what you call the first crash（12. 8. 2023〜19. 8. 2023）. Then, after the crash, I quickly and partly recovered from such symptoms, that is, I almost recovered the function of the sex organs temporarily（20. 8. 2023）, and some of the other symptms（headache and dying exhausted ）went away. But unfortunately, I soon got suffering from sexual diesease again (it is not perfectly lack of function, but very weak) and still loss of emotion and passion. And I am suffered from cognitive problem. It means death for me.

I think this may be the PFS. So, What is to become of me? Is there any possibility that I avoid the PFS yet?🥲 Or there is no hope?

I skimmed through this report just now…
Okey…So, in my body, AR is extremely overexpressed by 5αRI and then I was crashed (Cessation of finasteride will result in a surge in androgen production owing to the newly uninhibited 5a-reductase enzyme. Presuming a 60% reduction of basal DHT levels during finasteride use, cells epigenetically adapted to a depletion of androgenic signaling owing to the pharmacological reduction of DHT would be exposed to a 300% increase in DHT upon cessation…With a greater concentration of receptors, the organ becomes more sensitive to testosterone and at a certain point, paradoxically, that sensitivity may shut down.). And now after crash it looks completely hopeless…🥲

Can not we put the overexpressed AR back to the normal? Is there anything what we can do for reconstruction?

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
2 Likes
#2

There is always hope. GIVING UP cannot be an option.

1 Like
#3

hi, Henrique. nice to meet you.

Yeah…You may be right. I also told me so ――until I read the article “PFS: Manifestation of a Post-Androgen Deprivation Syndrome following exposure…”.

I sincerely want to believe the existence of Hope or Chance. But I have already got crashed and got suffered from typical symptoms … According to the theory of the article, It signifies that AR is terribly morbidly over expressed… I can not imaginate any way of recovery from this Deadlock situation… Or is there any efforts to down-regulate the overexpressed AR into normal level again?

1 Like
#4

I would really like to have answers to understand what happens in our body, but unfortunately, I don’t. We need to support studies and try to lead the healthiest life we ​​can. I’ve been losing muscle for 1 year. Some symptoms naturally improve, others remain.

#5

Dear Henrique.

I have read your story now…
You are definitely strong!!
thank you for your comment.

#6


↑おすすめのサイトです。
PFSであっても、１年以内に完治した人もいれば、↑のように時間はかかるけど数年で気にならなくなるくらい回復した人もいます。

私の場合は去年の１月に発症して、最初の２か月半はものすごくつらいクラッシュを経験して、そのあとの２か月は一時的に嘘のように回復しました。それからはよくなったりわるくなったりとかなり波がある状態が続いていますが、なんとか仕事をつづけながら生活しています。

私からのアドバイスは、まず希望を捨てないこと。そして、PFSの症状が強いときでも何かに打ち込めるようにすることです。

1 Like
#7

Thank you for sharing your story. As Henrique mentioned please don’t lose hope. We have world-class researchers working on PFS. There’s a study going on in Germany looking more into the androgen receptor and epigenetics like you have read into. There’s also a genome study that we are currently fundraising for. You can read about it at:

Please stay strong! We are all in this together.

2 Likes
#8

Donate to pfs network monthly ask family friends to do same. Atleast 100 dollar a month.

Research is progressing.

#9

HOPEQさん、こんにちは！

まさか日本の方と会えるとは！恥ずかしながら私の英語力はお粗末なもので…。おすすめ紹介ありがとうございます🙇 アドバイスもありがとうございます。

ともかく本当に困りました😥 とても現実の事とは思えないです。ついさっきまでここにあった私の人生が、わけもわからないうちにもう永遠の彼方へ失われたなんて… そしてそれよりも先に目の間の耐え難い身体的苦痛に私は負けそうです… 希望は捨てたくないですが…

かなり調べてPFSの理解に努めました。昨日私にプロペシアを処方した大学病院の内分泌科を受診して、分かったことをお伝えしてホルモンの追加の検査と協力をお願いしてきました。先生はPFSの論文群も確認したいということでしたので、全部お渡ししてきたした。もちろん治療法などは遠い未来のことでしょうが、少なくともそこの大学病院ではたぶんもうプロペシアは処方は控えられると思います。私は次なる犠牲者をたくさん救えたとは思いますから、きっと天国に行けるでしょう。まあもともと善行を積んできた自負はありますが笑😂

それはともかく、HOPEQさんにはもし良ければいろいろ経験を教えていてだきたいのですが…。どうでしょうか？でもこちらのフォーラムは連絡先の交換は禁止なのでしょうかね？

Aki

1 Like
#10

hi, Toughluck24, thank you for your encourage.

I hasitate to say that I can not send money. Now, I am extremely poor…to tell the truth, I have no job because I got terrible accident 8 years ago and heavy aftereffects…what’s more this nightmare😱 I am so sorry.

I will do what I can instead. I learned a lot and tried to understand PFS. Yesterday, I visited the endocrinology department at the university hospital that prescribed Propecia for me, and I told them what I found out, i.e. what roughly is happened and why PFS is hard to cure, and asked them for additional hormone testing and cooperation. The professor voluntary wanted to read the PFS papers, so I handed them all over. Of course, it is probably in the distant future that treatments will be established, but at least the university hospital will probably no longer prescribe Propecia, at least without strong warning of PFS. I think I saved a lot of the next victims, so I’m sure I’ll go to heaven. Well, I am proud that I have always done good deeds :joy:

I will look for good treatments with doctors of the hospital.

4 Likes
#11

If donations are too difficult, maybe consider telling your story on the Moral Medicine youtube channel which some of our members have made. Awareness is very important.

Great to hear the endocrinologist is interested in reading the papers at least. We have to do everything we can to convince the medical community.

2 Likes
#12

Yes, if you cannot donate we’d love to have you share your story on our youtube channel @aki

2 Likes
#13

你好日本朋友，我的情况跟你相似，现在一个多月了仍在受苦中，性欲和勃起方面已经完全恢复了，在第一次车祸后恢复得很快，然后就停滞不前，快感丧失、焦虑、抑郁一直来来去去

#14

Kinda suggests that if T levels are brought down then the drug removed recovery would be easier?

#15

6 months update
Unfortunately, most of my symptoms have hardly or never improved. Sorry for my poor English.

○IMPROVED
Brain fog and lost of emotion: recovered, of course not perfectly but 90〜98% within one month and a half after the crash. At first, it was difficult for me to read a single line in a book, and even when I watched a moving movie, I couldn’t feel any emotional movement in my heart. Now I can read books without much trouble, and I can normally experience heightened emotions when watching movies or sports.

Gynecomastia: has been improving very very slowly and slightly, but continuously and steadly. Unfortunately, I can not say when the improving started. Now, when I touch my breasts, I can feel the hardness of my pectoral muscles beneath the gynecomastia’s breast fat. But, it will take much more time to recover 100%. (My question is why my gynecomastia is improving. I speculate, what brings gynecomastia cured may be DHT and AR-function. At least, these are working for forming man-like-body. But other symptoms have no improvement.)

Testicular Pain: had stopped at the end of last year. But it brings no change in my sexual symptoms.

●NOT IMPROVED
Sexual symptoms: have no improvement. No morning/spontaneous/nocturnal wood, No sexual desire/libido, very reduced ejaculate, and so on.

Vitality and Motivation: are very low. I still
can not stand up and restart my broken life.

Muscle Wastage/Weakness: has no improvement.

skin deterioration: I can not find any improvement concerning sebum secretion and colkagen.

Insomnia: Now, I sleep about 3〜4.5 hours. But,
there was a period during which I was able to sleep a lot. I was so sleepy that I couldn’t wake up even if I wanted to, and I slept until around noon every day. During the time, I was trying no salt diet. In my opinion, very low blood pressure caused by low-sodium brought about it. If you want to have many hours’ sleep, you can try no salt=sodium diet.

・other
During this period, I didn’t do anything special except one unique diet, that is, avoiding salt=sodium thoroughly ( I tried it for three months, September 〜 December). This idea focuses on the fact that androgen-receptor has the function of vasodilation. Considering the critical importance of the vascular network in the biological system, which accesses all cells, I thought there might be scope to utilize the role of androgen-receptor in expanding and contracting blood vessels to construct a rehabilitation-program that promotes the functional recovery of androgen-receptor. In fact, I can not find any obvious results/fruits. I can not answer whether it contributed to my recovery in Brain fog and lost of emotion or not.

Now, at last, I have realized all self efforts are vain and what I can do is only to wait and pray for good luck. In other words, IN MY OPINION, it seems that we do not need to do anything, other than just waiting. Perhaps, the best and fastest way to recover, if it would really be possible, is to do thoroughly nothing and keep our body peace and calm so as not to hinder our body’s repairing process. And I do hope that scientists will save our lives.
果報は寝て待て。

3 Likes
#16

hey guys

I’ve noticed that even when I eat and drink excessively, I don’t gain weight.It is very strange. And it seems to me that it’s like diabetes, where insulin doesn’t work and sugar/glucose can’t be taken into cells.

Could you tell me about the risks of diabetes? Do people with PFS ever actually have diabetes?

#17

It seems like there are some that keep losing weight (probably because they can’t retain muscle), and other are gaining a lot.

Personally, I have to really focus on eating in order to gain weight.

I haven’t heard about people developing diabetes as a side effect of PFS though.

#18

My bloodwork has indicated prediabetes since PFS. Never had an issue with it before.

image

#19

Diabetes is mentioned in many articles. Quite a few have insulin resistance and Diabetes like symptoms it’s unlikely it shows in bloods because of the epigenetic changes. Same hoes for all the symptoms of Androgen deprivation despite having good numbers

#20

Thank you for your comments, M_C, mstone, LazarusRy.
I am a recruit, and you veterans are always my reliance in this war.

As you know, diabetes is disastrous disease. It is serious issue. I am really anxious about it.

Humm… So, on one hand in fact quite a few have insulin resistance and Diabetes like symptoms, but blood test can not or not precisely find and show the abnormality,

on the other hand however in this forum you haven’t heard about people developing diabetes as a side effect of PFS, although there may be a couple of exception-cases.

is this understanding about facts correct?

I think, if some patients in this forum were suffering from diabetes, there would be many references to it in Member stories or other discussions. If not so, patients may be not developing diabetes. However, in fact, I don’t gain weight oddly. if some of patients have Diabetes like symptoms, It looks like it’s just lurking…

1 Like