New (Oct '21) pfs member please help

Where are you from: the US

What is your current age, height, weight? 5’10, 135 lb

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.)? .25 mg

What condition was being treated with the drug?hairloss

For how long did you take the drug (weeks/months/years)? ONE DOSE

How old were you, and WHEN (date) did you start the drug? 20

How old were you when you quit, and WHEN (date) did you quit? 20

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

How long into your usage did you notice the onset of side effects? Immediately

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
[ •] Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
[ •] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

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

Misc
Prostate pain
[• ] Persistent Fatigue / Exhaustion
[• ] Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
[• ] 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?

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)? Will attach screenshots

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

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

I’m having practically every symptom in the book right now, most recently gum problems (profuse bleeding and black traingles from slight recession). It was really interesting for me because I initially tried .25 with no symptoms once but got scared off and didn’t touch it again. Later on tried the topical varient and had awful symptoms for a week (headache, head pressure, dizziness, inability to focus or concentrate,) and then they completely subsided. Then about 8 months later I foolishly decided to try .25 again (a quarter of a pill) once, because my friends been taking it with no issues (interesting how I took .25 once before and had no side effects). And almost immediately I had this cold, shaky feeling. Followed by the worst symptom of all complete disassociation and depersonalization, along with head pressure, brain fog, achy muscles, (luckily no libido issues). I thought it was over for me, I’ve never been suicidal but the feeling of seeing and hearing everything around you and not being able to connect was tortuous. Thankfully the disassociation and depersonalization symptoms have gone away for the most part but I occasionally get them in stressful situations and weirdly while driving (which is not good). The other symptoms remain but to a lesser extent. It may be worth noting that I sustained a bad concussion about 2 years ago which I heard can heighten your chances of getting pfs. I don’t really know where to go from here, which doctors to see, I have upcoming appointments with an internist, dietitian, periodontist, rheumatologist, and hopefully finding a new neuro endocrinologist because she wouldn’t issue the tests I requested. My most recent symptoms are very cold hands and feet, jaw pain, muscle aches, what feels like bone pains as well. I was advised to get these hormones tested, I got a couple of them already but many my doc refused.

Sex Hormones
Pregnenolone - 84140
Progesterone - 84144
Cortisol - 82533
Cortisone - 82542
DHEA-S - 82627
Androstenedione - 82157
Total and Free Testosterone - 84410
DHT - 82642
Androsterone - 82160
Estrone (E1) - 82679
Estradiol (E2) - 82670

Neuro-Endocrine Hormones (Brain)
Prolactin - 84146
FSH and LH - 83001; 83002
GH - 83003
ACTH - 82024

Neurotransmitters
Amino Acid Profile - 82139 (blood) or 82542 (CSF)
Catecholamines - 82384

Thyroid
TSH- 84443
Total T3 - 84480
Total T4 - 84436
Free T3 - 84481
Free T4 - 84439
Reverse T3 - 84483
TPO - 86376

Liver, Blood, Others
SHBG - 84270
IGF-1 - 84305
IGFBP-3 - 84681
Insulin - 83525
Metabolic Panel - 80053
Liver Function - 80076
Iron - 83540
Zinc - 84630
Vitamin D - 82306
Uric Acid - 84550
Magnesium - 83735
Lipid Panel - 80061
CBC - 85205
PSA - 84153

So my lh and fsh are both low, fsh is tanked.
Calcium is high.
I got tested about 9 months ago with a tbi related issue and my cortisol level was around 17 then I believe in the high spectrum, it’s not low now (still within normal but significantly tanked).
I need to get much more tested.
I ordered sb and bhb to get started with the demethylation theory, we’ll see how that goes.
Any other advice or help of any sort would be greatly appreciated, I feel like my condition is rapidly deteriorating.
Also worth noting my diet and fluids are shit atm, in a very depressed state.

did you get better ?

Hey ector, thanks for replying. No it hasn’t but I really believe it is autoimmune. My doctor thinks it’s autoimmune related too. I’m seeing a bunch of specialist and probably gonna go down that route regardless.

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@Headpressure I also believe the immune system plays a part in the symptoms and their levels of severity. Keep us posted especially if you get prescribed any AI therapies.

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I most likely will, it’s so weird because I was trending it the right direction with my mental symptoms, and then I got a throat infection and was prescribed amoxicillin, and then everything went haywire. Immediately I started having chronic muscle aches, twitches, severe muscle atrophy in my right calf, joint pain, joint cracking. Also I previously had Epstein Barr (enlarged spleen), possibly an std that went untreated, covid, and number of mental health issues. This may have just been the nail in the coffin, for my immune system. My doctor suspects it’s pans/pandas related. Covid may have played a big part, because I took .25 about a year ago before I had it and I had no reaction. I stopped because I was scared, then I tried the topical I believe after covid, had a really bad reaction but my immune system was able to tackle it because it didn’t go as systemic I presume. This time I guess it just doesn’t have the power. There’s also a theory that somehow we’ve developed antibodies towards, towards 5ar, t, dht, regardless I think the treatment would be similar. So we’ll see what they say.

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Hi @Headpressure

Welcome to the forum, and I’m sorry to hear about your current situation. I myself get severe head pressure during down turns and it is one of the most debilitating and frustrating symptoms.

I’m not sure who told you that having a concussion increases your chances of developing PFS but that’s not true. There are no markers to know who is going to develop this condition and when. It’s also extremely likely PFS is not autoimmune, given Baylor’s findings, so I’d encourage you not to throw away money with doctors who don’t have any familiarity with this condition claiming it is autoimmune. Please, that’s my one big piece of advice I can give you in your current state. Any doctor claiming they can treat PFS with any degree of certainty is completely full of it.

As you’re still in the first few months, and you’ve seen some improvements with some symptoms already, try to take some time to not do anything if possible. And please, avoid any anti-androgenic substances which could worsen your condition.

If you haven’t already, it’s also important to report your symptoms to your regulator. One of the problems with PFS is that many are unaware it’s a possibility, and that’s due to a lack of regulatory activity. Reporting your symptoms to the FDA online doesn’t take long and makes a difference.

Take care and keep us updated.

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Update, really not doing well guys the disassociation, derealization, and anhedonia, brain fog, gum recession, have gotten considerable worse. It doesn’t feel like real life at times (nearly all the time), I’m only 20 years old, like how could this be happening to me. Still in the early phases of this running extensive lab work and testing. But, this has wrecked me kinda to the point where I don’t care anymore. I’m not saying I have given up, I just can’t feel a damn thing. To put it in perspective if I were to lose a loved one or something that would normally impact someone significantly, I genuinely don’t know how I’d react or feel any pain, or things normally associated with something like that. Thats the part that’s making me really suicidal atm, I’m not depressed per say. I just don’t feel anything. I occasionally even laugh at how my life and this situation has turned out. That feeling of not feeling is the one that’s killing me, and I hope it won’t be the end of me, but in my state at the same time I kind of hope it will be. Cheers guys, all the best:( :slight_smile:

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Worth noting the only thing that slightly pulls me out of that state are benzodiazepines, klonopin in specific. I don’t know the exact mechanism of action. I try to abstain from taking them as much as possible but at times I do, probably more often than I should. I feel like I’ve built up some sort of tolerance, it’s not as effective as it once was.

Forgot insomnia as well that’s been crazy. It used to be just hard for me to fall asleep but once I fell asleep I’d stay asleep, now I just can’t fall asleep. I slept 2 hours in the past 2 days. I’m losing my mind.

You’re not alone :slightly_smiling_face:! There are some other very young guys and a girl Here who’s life have been damaged by an entirely useless drug after all. Some of them even bedridden!

This should not frustrate you, just show that others share your pain in this little community of pharma profit victims.

I’m much older but PFS knocked me out like you. I have lived a funny life and than one big mistake taking the pills from the urologist as a generic pharma muster package with out even checking what substance I incorporate.

Now I stay in bed every day, remember the day I started the drug and play this scene every secunde and in my mind I didn’t touch the poison and tell me the story of the last half a year without PFS. From my actual live I feel more an more disconnected.

I can’t give you an all becomes better, but with 20 years there must be some power to life on. And you have no ED so you have all options for partnership and sexuality in your live. Many others here dream of that.

I’m so sorry to hear man that must be very rough especially for so long. Even in this state, I hope I’ll have the strength to fight to this, and hopefully :crossed_fingers:t3: Recover (as well as you). Thank god I’m blessed to have very supportive family members, as well as some very wealthy relatives and people around me (that may be able to have some sort of impact). So I do have a bit of an Arsenal fighting with me. During these dark times, I’m gonna try and stay strong use all the resources I have get all the necessary tests (which are in progress for me) and take it from there. It’s just this feeling is fucking unbearable.

Also if anyone knows the science behind why benzodiazepines make me feel considerably better and what my issue may be that would be greatly appreciated🙂

Fin blocks many neurosteroids that are positive allosteric modulators of GABA receptors.

This means while they don’t bind directly to the GABA site, they make the natural GABA ligands more potent.

It seems like for us this effect is persistent or permanent.

So when you use Benzo, you mimic this effect. BUT as you build tolerance you actually make it worse. So be very careful about using them. They’re great acutely but very detrimental with chronic use.

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Benzodiazepine reacts with the GABA Rezeptor. At a neuroendocrine doctor I was totally tired an my eyes couldn’t fix a light signal. After taking Tavor Lorazepam I was refreshed and able to follow the light signal. Maybe a start of a particular. GABA therapy.
Not only sodium Butyrat.

Yeah I’m trying to be selective when I take them only at my worst, but until I make some sort of improvements on some sort of protocol (gonna have extensive test results soon) I don’t know what other options I have. This feeling is absolute torture.

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I know it may be counterproductive in the mean time but I don’t know what other options I have any advice?

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Sorry, not much. It’s a very hard decision on what to do. Truly moment 22. I hope you will soon feel at least a little better as it still wasn’t that long ago you quit.

All I noticed was your calcium was high (although not by much). Might be worth getting your PTH value checked out in your next tests just to rule out any issues there.

And if you got the money to spend I’d look into some kind of interleukin panel. But I don’t know if it would be of value since not many people have done it and I cannot get it done myself in Sweden.

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Thanks for the response I have about 50 bloodtests in progress, I’ll tell my doctor to add pth to it. I’m not familiar with the interleukin panel, what’s it responsible for and why do you think it may be beneficial for my case. I’m getting plenty more tests, including Neurosteroid tests. Want to be as thorough as possible, also we know we’re all different symptomatology wise, so I wanna figure out what my specific deficiencies/issues are.

Interleukin are a family of proteins that signal to the immune system and work both anti inflammatory and pro inflammatory.

I don’t know if it would be beneficial, but if the immune system is involved in PFS it would most likely show on a interleukin panel (at least if it’s systemic).

Increase in IL6 is linked to osteoporosis (weak bones), depression etc.

IL-1 and IL-17 is involved in neuro inflammation etc.

That’s just a few. But in most auto immune or immune deregulated driven diseases some of them would be elevated, probably a few even since they work in conjunction to each other.

As I said I don’t think many PFS patients got it tested, most only check hormones and basic bloods. I’m just putting it out there because it’s something I personally would test if I could, no idea if it would actually show anything.

When you say neurosteroid test, do you mean a spinal tap (CSF)?

Guys I can’t take this anymore, I don’t think I can do this.