I take it you didnt have sexual issues or shrinkage?
Your theory is not totally off point. The problem is, to my knowledge, the half life of Fin is a matter of hours. That means there is no way to taper Fin even with the smallest dosage. It has been mentioned here several times if you search the forum for “taper” . But… if what you are saying is correct… maybe by taking herbs, food, supplements that gently lower total T… eventually the body will resensitize. Then slowly elimate those herbs. You see people on here that wont eat nuts, tomatoes, avacadoes, etc… because they lower free T because it raises SHBG (I think thats what its called). So if that can be the case… then using food to lower hormones to resensiize could maybe work for some people. But again… everyone here is effected differently. Its not like every PFS sufferrer has the same symptoms. Thats what the major challenge is here. I dont think your going to see a cure with a supplement. Its going to need to be genetic recoding possibly using CRISPR. Some think that blasting the body with anti virals like PREP can reactivate some of the rececptors. No one really knows at this point. Do the surveys and follow the lead that @awor and @axolotl are taking. They know more about this disease than anyone so dont try to reinvent the wheel.
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I suppose it’s worth noting that the same theory could result in the body seeking to increase sensitivity to testosterone and then when it returns again, things get even more desensitised, taking you even further down the track with this.
We have seen many people get worse with further use of anti androgenic substances after crashing with a strong 5ar inhibitor.
Personally, as I’ve been feeling better I’ve been introducing more of the foods that I had been avoiding but I should note that it’s been in moderation and is definitely after improvement, not before.
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Hey @Greek . I’m glad to hear you have been feeling better. Where have you noticed the most improvement?
Frankly… I started out eating just strip steaks and broccoli as I didnt know what else to do. Ate basically keto for 3-4 months. Most of my symptoms cleared up (fatigue, brain fog, pins and needles, brain zaps, muscle twitches, peeing constantly, etc… ) Then when i went on Remeron… I couldn’t help myself. I was eating cheetos, ice cream, chips, started back on coffee, … whatever. Right now I dont avoid any food. I dont seem to notice a difference one way or another. IF I eat a really heavy meal quickly… I notice my heart rate speeds up. I have a diagnosed AV block. Not a huge deal… but I’m mindful of eating lighter portions and stay away from heavy mayo and bluecheese…which seem to set it off for some reason. But even this heart rate thing has improved since mountain biking. I feel it has improved my baseline. So much so that I am going to buy myself a very very expensive mountain bike as a reward for Christmas. Good to have something to look forward to.
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Pretty much everywhere.
I’m getting more sleep, sex and motivation. A lot of symptoms have pretty much gone (though I had some fog/lightheadedness earlier - but I think that might be due to not having eaten much at all today).
I’ve started to exercise, which I’m hoping will help with energy levels, that’s something that is still an issue.
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Yes, I believe there is two groups those that crashed and were on the drug short term (who seem to be worse off) and those those got side effects from long term usage. I don’t believe eating foods to lower these hormones would be powerful enough to mitigate epignetic changes. I would really like to try my method but only in a clinical setting as I would be worried about how my body would react however I don;t think there is a possibility it could get much worse for me as I’m physically, mentally and sexually disabled.
I agree with you. Some of the worst cases are from 1 pill. Then some of the mild cases have taken it for over a decade. That seems to be a theme to be noted. Thats why the surveys are SOOO important. This will help the foundation link symptoms, time lines, etc…
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Great news! So glad to hear this! I look forward to your recovery story some day!
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That’s a Very good suggestion, I went crazy about how to take survey for two months then discovered that I needed a pc 
I took fin for 20 years on and off. I have every symptom I have lost everything. Every day is a fight fir survival. I am continuing to get worse. So I disagree with the 1 pill view.
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Thankyou for weighing in @LazarusRy.
As always with this syndrome, “the average” or “standard” is non-existent.
We need to be careful about sweeping statements.
I am of course dismayed to hear of your condition. I really hope that you’ll see some good days very soon.
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I’m sorry to hear this… but I learned something. As @Greek says, there doesnt seem to be a standard case.
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Hi - that is a very interesting article and Google translate did an OK job of it, but I can’t quite make out exactly what he did.
Do you think, if it isn’t too much to ask, you could translate enough of it for us to understand his regimen and his tapering? It’d mean an awful lot if so.
Thanks if you can buddy. 
When he had used fin for about 7 years,he started to have serious side effects.He thought he might have pfs.Also,he perceived he was better as taking fin.So,he repeated to take fin as he felt much worse.The sphere when he started to get worse was gradually longer than before.Finally he stopped taking fin,and his symptoms almost disappeared.
I don’t know whether he had really pfs,but this may be some protocol.
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Thank you so much for that. I had a little look, but because of his charts in Japanese I can’t follow his schedule and dosages. Google translate gave me something of an idea though!
If you have time, it would be so so helpful if you could re-created his schedule and dosages. If we could have that in English for the forum it’d be so helpful - almost nobody logs as thoroughly as this guy.
Is that something you think you can do @Mr.Children ?
Tbh, I am busy searching for what gives me recovery and studying( I am a student).So,it might take time to translate…Of course, I will make efforts.
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That is super kind of you, thank you.
I went ahead and translated it because I was eager to read it myself. What’s important to note is that instead of attempting to take extremely small doses, he skipped days in between doses.
As for his pictures, the very top row is a count of the days since onset of side effects. Below that is the numbered month, below that is the number day of the month, below that is the Japanese name of the day. The important part is the next two rows: His finasteride dosage and oral minoxidil dosage. A number with a Japanese character next to it is the amount in mg he took, but just a number that counts up in the following days are days that he did NOT take finasteride.
The column is the drugs he’s taking then his side effects in this order:
Finasteride
Oral minoxidil
Sleep
Palpitations
Tingling in arms (especially left)
Hot flashes in face
Abdomen abnormality
Appetite
Discomfort in head
Back of the head
Tinnitus
Nighttime erections
Dayttime erections
The symbols in the chart are a rating system - X is the worst, a circle is the best, and a triangle is in-between.
I first took finasteride March 2008.
At this time, I was told finasteride was known to cause side effects among a small percent of people, but if you develop side effects, you will return to normal if you quit, and that was it.
After 6 years and 7 months of taking finasteride, in October of 2014, I developed side effects.
I started gathering information about quitting the drug and what I found scared me.
- After quitting finasteride, you can develop PFS
- It is not known whether to quit cold turkey or taper off
So should I just continue taking finasteride for the rest of my life???
In my case, serious side effects already appeared. At first, you’d think you should quit immediately. But if PFS develops from quitting, it’s possible something worse could happen if you quit.
When the serious side effects first appeared, I wasn’t even sure if it was PFS or not. Naturally, I believed it wasn’t PFS but simply side effects. Thinking that, I thought that if I quit finasteride I could truly develop PFS. Will my side effects now continue forever?
However, if I don’t quit finasteride, these side effects will continue and there is always the possibility they could get worse. Could I live like that?
At that moment I thought it’d be great if I continued taking finasteride but the side effects disappeared. If the side effects disappeared, it would mean it’s not PFS and I would be relieved. From now on, I could just slowly taper off over the course of several months or years.
Having said that, on October 20, 2014, after the side effects appeared, I continued to take finasteride.
Because I was also taking oral Minoxidil, I thought it was dangerous to quickly quit it, so I continued to take it.
Below is a record of my experience: (first picture).
The first week’s side effects were insomnia and hot flashes on my face and arms. Up until the 23rd I didn’t think I had sexual side effects, but it was simply a side effect of oral Minoxidil. But on that Friday, my penis and scrotum started to feel odd. That continued for 2 to 3 days and I was forced to accept that it was a side effect of finasteride. My abdomen started to feel odd, and I lost nighttime and daytime erections.
By the second week, I started having days I could sleep normally.
The hot flashes on my arms and back of the head didn’t get better. Especially, during the last half of the first week, it got a bit better but returned on the second week. I was tormented by the thought that this would continue for years.
I didn’t have an appetite, and I lost 5 kilos in 2 weeks.
The first week I took finasteride and minoxidil only on the 24th. It’s a bit confusing but “Day 1”, “Night 2.5” etc. tell when and how much I took. Simply “1” or “3” are days I didn’t take it. Basically, it’s important how many days I didn’t take it. The dosage amount varies such as 1mg or 0.5mg. My worries and distress is shown by those numbers. I really wanted to quit but if I quit I’d develop PFS - but if I continue, the side effects won’t disappear. Everyday I continued to ponder these problems that had no answers.
Also, I wanted to believe the side effects were from the oral minoxidil. So, I quit minoxidil and only took finasteride. Then I prayed the side effects would go away. But reality is cruel, and the sexual side effects slowly got worse.
The particularly important turning point was November 2nd. On October 31st, I took 0.5mg of finasteride during the day. I thought this would be my last dose. But 2 days later on November 2nd, before noon, I felt an intense, strange feeling in my penis. Jumping up from my futon, I thought “Did I get PFS?” Without thinking, I took another 0.5mg of finasteride. I don’t know if that worked, but the strange feeling lessened. This “strange feeling” appearing, taking finasteride, and the strange feeling going away, repeatedly occurred.
It might be my imagination but I thought that if I get the strange feeling and stopped taking finasteride, I could really get PFS. In actuality, I’d take finasteride and the strange feeling would disappear, but I had no proof.
Next is the 3rd through 5th weeks: (second picture)
During the latter half of the 3rd week I got insomnia again. My hot flashes got worse.
On November 6th I again thought I had taken my last dose. Until now, I had succeeded in a full 6 days of not taking the drug. But I had a deep sense of discomfort during that 6 day period. Nevertheless I continued to monitor my situation and on November 13th on the car ride home from work, I experienced something I never had before. A discomfort like “Ahh, it’s over huh”. My testicles flinched upwards, from my penis or something deeper in my body, like my kidney, I felt a discomforting surging feeling coming forward. 15 minutes later I quickly took a dose of finasteride and the feeling disappeared.
I strongly felt that the side effects were closely connected to finasteride. I acknowledged that quitting was too dangerous. But I didn’t take any more doses and prepared for the day I would finally be done for good.
On the 4th week, a new side effect appeared. An odd feeling in my head. It was scary. It was in the center of the back of my head. It was accompanied with numbness. At the same time, I experienced tinnitus.
But there was a good sign. From the 3rd week on, I had nighttime erections, and the 4th week on I had daytime erections. From the second week on I started eating almonds and doing light exercise at night. Maybe it was because I was paying attention to my diet and health.
On one side, I started getting erections again, but I still had discomfort in my scrotum and penis. Anyways, I didn’t really understand what was going on.
The 6th through 8th weeks: (third picture)
During the last half of November, I started getting erections again. My hot flashes started disappearing. I still had some small hot flashes in my arms. I didn’t really have problems with sleep anymore. My side effects were largely going away.
My desire to finally quit finasteride for good greatened. During the last half of November I reduced my finasteride dosage about 0.2-0.3 mg. Even if I lowered the dosage, my sexual side effects didn’t get worse, in fact I was encouraged by how I largely got better. And on December 7th I took 0.2mg, and a week later on the 15th, I took 0.2mg and finally quit for good.
Honestly, if I got PFS after quitting finasteride now, I thought there was nothing that could be done.
If you keep taking finasteride fearing PFS, there will come a day where you’ll quit. It’s too risky to take it the rest of your life. The risk of developing PFS is probably pretty low. I don’t want to go on always fearing that possibility. So I should quit finasteride right away - that’s what I thought.
In the end, it was 57 days from getting side effects to quitting finasteride - about 2 months. It was a period of trial and error abstaining from finasteride and decreasing the dosage.
For me, I think it was better to taper off instead of quitting cold turkey.
As proof of my success, I’ve been fine 4 months now after quitting.
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thanks
It’s much more accurate than what I will.
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My word that was an immense effort there. Thank you enormously for that!
I’m donating $10 to the foundation because of this post.
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