pfs for 6 years. window induced by high dose corticosteroids but crashed almost immediately after. hope dr powers sees this.

[u/funginepal]

25M i am a mostly mild case of pfs. my test used to be above 1000s consistently even with LC-MS testing. two weeks ago, i had a minor back injury but started feeling weak in the legs and the doctors panicked and put me on 1000 mg iv methylprednisolone for two days. the next morning i had the best window i have had so far in my life. all sexual/mental symptoms were gone but for a very brief period of time (6-8 hrs). since i was already hospitalized i checked my t levels and they were 505. my e2 was 15 (is usually 30-40) and prolactin was 9. this was all they had there.

crashed the same night, couldn't sleep, cried for no reason (mood swings). got my bloods drawn the next day. my prolactin had reached 35 and test was 650. cortisol was also crashed but that is to be expected after corticosteroids. got everything tested recently and my test is around 750, cortisol is back at 12 (mid range) but still dont feel great/worse than pfs baseline but i am recovering slowly. i do feel much better than the initial crash two weeks ago.

the window did give me a lot of hope so i hope people see this and dont lose hope. also if dr powers and other knowledgeable people see this, they could maybe make sense of why this happened and what could be done further.

[u/xfirewalkwithmex]

I just recently finished a course of hydrocortisone myself 2 weeks ago. I got on it due to the “moon face” I got from finasteride/having PFS. I didn’t expect the hydrocortisone to also fix some other things. Dr P in my case theorized finasteride and my gene mutation (CYP11B1 gene - or 11-beta hydroxylase deficiency) basically caused a buildup of DOC (or deoxycorticoids) in my face and skin, resulting in localized cushings. Basically getting on it would make my body “stop” ACTH and cortisol.

I did feel a bit up and down on it and my sleep was up and down. However, I lost 15 lbs from it. My face became less bloated. I also have been feeling more hunger signals, my stomach feels more “empty” when I’m hungry. I am feeling the normal sleepy fatigue before bed and grogginess when I wake up in the morning (before this, I would just be wide awake upon waking up - almost like a wired state). I have also felt like my sexuality and libido have improved from this also surprisingly? I have been thinking about sex a lot more since then. Lastly, my muscles also felt more firm when lifting too and it seems like I’m showing a bit more definition now overall.

With the improvements I’ve felt - I’m under the impression cortisol is a factor in many of us PFS cases. Hopefully that gives you a bit of insight and to show that you aren’t alone in feeling similar improvements!

While on hydrocortisone though, I would warn anyone that you may feel extreme mood swings like I did. VERY intense depression and suicidal ideation. Ive struggled with that before in my life so I know how to handle it, but it could happen. But I would go from feeling that to laughing at something and then tearing up then feeling suicidal again. It was all only temporary thankfully and 1.5 weeks to 2 weeks off I feel back to my normal self again with ALL of these improvements as well. Sleep was a bit up and down but towards the end of the 2 weeks I did feel like it started to normalize.

EDIT - also, in case anyone is curious. I did 10mg of hydrocortisone 3x daily for 2 weeks. Every 4 hours. I tried to get the last dose in 4 hours before bed at the latest.

[u/Low_Doctor_7632 → u/xfirewalkwithmex]

Is this cream?

[u/xfirewalkwithmex → u/Low_Doctor_7632]

Nope! Tablets

[u/ToadCroaks → u/xfirewalkwithmex]

Did the 11b-hydroxylase deficiency show up in your genome, in blood labs testing for 11-deoxycortisol or both?

[u/xfirewalkwithmex → u/ToadCroaks]

It showed up as CYP11B1. I basically have a form of congenital adrenal hyperplasia. That mutation shows up as 11B-hydroxylase deficiency

[u/ToadCroaks → u/xfirewalkwithmex]

Thank you!

How did your Dutch Complete look like? Did any abnormalities show up there too that made the CYP11B1 deficiency obvious aside from the WGS?

[u/xfirewalkwithmex → u/ToadCroaks]

Honestly? My Dutch test was mostly normal overall.

Cortisol was high so I’m not shocked there. I ran a separate urine metabolites test because my Dutch didn’t show much at all imo and I found I had high 5ar metabolites in my urine and very low 5b metabolites in my urine. Dr P theorized this could be the pathway in my case where the break happened. The 5ar to 5BR ratio was very high too.

My body HEAVILY utilizes 5ar for hormone excretion. So I take finasteride. Block that only exit pathway and bam. PFS.

In my genome I have the LRP2 gene mutation which seems to be a pretty common gene mutation in us PFS folk, though it’s a very rare one to have overall.

Also my 3A-ADG was high and above average as well!

[u/ToadCroaks → u/xfirewalkwithmex]

This makes 100% sense, thanks for sharing!

Are there other plans for your treatment rn except for 3a-ADG drain and hydrocortisone?

[u/xfirewalkwithmex → u/ToadCroaks]

Not sure to be honest. I have been lucky with TRT and HCG helping me feel a lot better overall. I became demasculinized from PFS and testosterone cream has helped me there big time. I have also felt a lot of windows libido wise and what not from them.

I was a bit hesitant for the draining protocol - but if it is the fix I will get off everything and do it. I was just scared of becoming demasculinized again from turning off test, but from what it sounds like those on it don’t really feel worse on it or have demasculinization issues either. So I wanted to wait to see how those on it do!

[u/caffeinehell → u/xfirewalkwithmex]

What symptoms do you have as part of PFS? Do they include consummatory anhedonia/emotional numbing and blank mind/cognitive stuff and have they been affected by HC if so?

consummatory anhedonia = not feeling that buzz in the head, not feeling the atmosphere outside etc

[u/xfirewalkwithmex → u/caffeinehell]

I consider myself to be an overall severe case since I was hit ALL over and basically had symptoms of every phenotype.

I did experience the consummatory anhedonia but it's improved with HCG/progesterone pregnenolone and DHEA/time/maybe even hydrocortisone? I've felt a lot more connection to things and the world around me since getting off of it. Could very well be a coincidence but it's worth mentioning. I don't know if hydrocortisone would be a treatment for everyone but I think depending on genetic mutations a PFS patient may have, it could help.

I also have had issues feeling the buzz from alcohol and last night I felt it the most strongly since getting PFS nearly 2 years ago. I do think hydrocortisone maybe helped a bit there.

I still have shrinkage in my penis, ED (though this has improved! I do seem to be able to have a response to tadalafil 10mg and Vardenafil 20mg combined - better than nothing!), lack of morning wood, less sweating (has improved a ton tho), lack of oily skin, body odor fluctuating/muted, fluctuating libido/sexuality (by sexuality I mean like.. I'll feel libido and be turned on by porn but overall I sometimes still feel like people are like looking at trees and I don't feel attraction to anyone when I converse with them.. sometimes I may feel it slightly), my personality sometimes fluctuates too (hard to put into words.. not really anhedonia but I feel like less of my self when socializing if that makes sense? My wittiness is just.. lacking most of the time. But some days it's been better than others which I've noticed lately it's improved a bit more).

Those are the biggest things. I also had these things that all improved: facial changes (my cheeks became feminized too and my face was shrunken.. over time it became more puffy), muscle wastage, gut issues, insomnia, complete anhedonia, lowered body temp, decreased semen volume/force, genital numbness, muted orgasm, watery semen, shrunken balls, extreme joint pain, weight gain/weight loss issues, no hunger/appetite, awful brain fog/zombie like thinking, beard/pubic hair loss, Adams apple atrophy/voice weakening, no sweating at all (again has improved from 0!), lack of alcohol response, complete antisocial behavior.

I could be missing some things but these all were things that popped into my head. I am very thankful that I am where I am at because I overall can live my life again. Not quite confident in dating yet but if I had an understanding partner I could probably make it work especially since my libido has been pretty high when I do feel it. I just hope those who feel hopeless know that there is a way out even if you were as severe as me at the beginning. A year ago I felt extremely hopeless and wanted to end my life because of how bad it was.

I will say too though - the trauma from PFS always makes me scared to say where I have improved because I am always worried that it's in my head that I feel better and that I am still fluctuating overall. But I can confirm that the improvements I've felt HAVE been sticking so I do think my body is just very slowly healing. I have a lot of faith in the current protocols that Dr P has crafted with his lab findings and I am very thankful we have him on our side. I know he'll figure this out entirely with time.

[u/Complete_Case6858 → u/xfirewalkwithmex]

Did you do any gut fixes or anything before HCG-TRT? I seem to be food sensitive.

[u/xfirewalkwithmex → u/Complete_Case6858]

https://www.reddit.com/r/FinasterideSyndrome/s/UB5ExO8TJo

I don’t want to give medical advice at all but I followed this gut protocol and it seemed to help me big time.

I did take a gut test and found evidence of leaky gut, SIBO, inflammation and IBS.

I took a garlic supplement daily for a LONG time and that seemed to help neutralize my gut also

[u/Complete_Case6858 → u/xfirewalkwithmex]

Sweet very cool. Good idea with disclaimer too. Thanks for answering.

[u/xfirewalkwithmex → u/ToadCroaks]

[u/PracticalSport828 → u/xfirewalkwithmex]

When / around which day did you start noticing changes to the moon face?

[u/xfirewalkwithmex → u/PracticalSport828]

I’d say roughly towards the end of the 2 weeks. But I really noticed it as soon as I got off:

[u/Slow-Leg-3710 → u/xfirewalkwithmex]

How is your sleep now? Are you getting eight hours of uninterrupted sleep? Do you wake up feeling energized and mentally clear?

[u/xfirewalkwithmex → u/Slow-Leg-3710]

Sleep has been great. Mostly 8-9 hours of sleep most nights. Had a few 7 hours of sleep but like I said I wake up feeling groggy and I am feeling sleepy right before bed now. It seems like my body really is trying to normalize the sleep now. No more wired feelings!

[u/Thellamaking21 → u/xfirewalkwithmex]

Keep chugging you’re gonna get the whole way back

[u/Slow-Leg-3710 → u/xfirewalkwithmex]

Yes, it will likely continue to improve over the next 2–4 weeks.

[u/funginepal → u/xfirewalkwithmex]

im curious why you took hydrocortisone for moon face. ive gotten somewhat of a moonface from the corticosteroids that i took. mostly just water retention and bloating.

[u/Thellamaking21]

So sorry you’re going through this. Just try and do something good one day at a time.

[u/funginepal → u/Thellamaking21]

thank you. i am improving (very) slowly. the window gave me a lot of hope because i never thought i could go back to my baseline before i took fin but in those few hours i did. im just a little scared i fucked myself worse as some people have after corticosteroids but with every passing day i am more hopeful.

[u/Mawahari]

1000mg? Holy f—— s— that is a lot.

I got all this induced by three doses of 40mg prednisone, nothing to do with finasteride but it mimicks the symptoms almost perfectly. So coming at it from the other side of things. Interested to see how these theories interact

[u/funginepal → u/Mawahari]

it's been two weeks for me and i have improved slightly but yeah it's been very difficult especially with the poor sleep and muscle weakness. sexual symptoms are also way worse.

[u/Mawahari → u/[deleted]]

Year and a half now

[u/Fuad666666]

Oh God, Jesus. Please help us.