PFS from Saw Palmetto. Made Improvements. 85% recovered

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)? NJ, USA

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? 23. 5’9. 125 lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Saw Palmetto Extract

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 320 mg
What condition was being treated with the drug? Preventing Hair Loss

For how long did you take the drug (weeks/months/years)? 1 month

How old were you, and WHEN (date) did you start the drug? 23

How old were you when you quit, and WHEN (date) did you quit? 23

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

How long into your usage did you notice the onset of side effects? 2 weeks

What side effects did you experience that have yet to resolve since discontinuation?
ED, Nipple Pain, Testicular Pain, Anxiety, Joint Pain, Brain Fog

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
[ X] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
[ X] Confusion
[ X] Memory Loss / Forgetfulness
[ X] Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
[ X] 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
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
[ X] Muscle Weakness
[ X] Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
[ X] Persistent Fatigue / Exhaustion
[ X] Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
[ X] 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? Mentioned Below

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)? Mentioned Below

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

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

I noticed increased hair shedding in August 2021. Started taking SP as a natural alternative to finasteride. Took it for 1 month. After 2 weeks I noticed nipple pain and testicle pain, and I was extremely tired all the time. I was going to bed a lot earlier. I produced a lot less semen, and was having ED. The joint pain from my Ankylosing Spondylitis worsened. I have been taking Enbrel since April for this condition, and also psoriasis. I luckily did not develop severe PFS like many others on here, but it was definitely moderate. I would say about 6 from 1 to 10. I listed my side effects above and I don’t want to spend all day talking about them since we all know what this condition involves. My goal in putting my story out there is to talk about some of the improvements I have made, although I have not recovered completely. I have been reading these forums for months now, and I believe I am taking a slightly different approach to treatment from most of the other people on here.

Supplements I am taking:
Vitamin D 20,000 IU daily
K2. 100 mcg
Zinc 50 mg and Copper 2 mg
Boron 3 mg
NAC 600 mg
Life Extension – Mega Benfotiamine 250 mg
Life Extension – B-Complex
Standard Process – Collinsonia Root
Nature’s Way – Gotu Kola
Choline & Inositol 500mg
Cod Liver Oil
Solgar – Fish Oil
Solaray – Sage
Alpha Lipoic Acid
L-Tyrosine
5-HTP
Folate 1,333 mcg DFE
L-Carnitine
Biotin 1000 mcg
Magnesium Glycinate 400 mg
Quercetin 500 mg
Bodytech – Arginine AKG
Standard Process – Dermatrophin PMG
CoQ10
Wheatgrass Juice Powder and L-Glutamine. 2 tsp in cold water on empty stomach
It doesn’t really matter what brand you use for supplements as long as they are moderately high quality. Make sure there are not a lot of filler ingredients such as seed oils.

I believe my being on Enbrel, which is a TNF-Blockers may have prevented me from developing Severe PFS, although it obviously did not prevent it entirely. Reducing inflammation and finding some way to normalize the immune system seemed to have helped me. I take the Standard Process Dermatrophin for my psoriasis, but the theory behind it is that you have an autoimmune disease that attacks certain parts of the body, and you take a dessicated extract from an animal organ which acts as a decoy for your immune system to be preoccupied with, which allows your organs to heal. I am going to purchase other products from them soon. But these must be used in conjunction with giving your body the resources it needs to heal itself, and also the right environment which includes low stress, good diet, and adequate sleep. You must stick to a sleep schedule. I have been on keto for a couple months now, and for me personally it has helped a great deal. I went back to eating a bunch of carbs for a couple days and immediately felt horrible. For me it is a high protein type of keto, bordering on carnivore. I stopped drinking coffee and instead drink tea. I took NSAIDS for almost 2 years for my joint pain, which is extremely harmful for your gastrointestinal system, which is why I use wheatgrass and L-Glutamine. Finally, I take a lot of vitamin D because high doses have been shown to be helpful in autoimmune diseases. I know many people avoid it because it is a 5-ARi, but I believe there is more harm in avoiding it than taking it, and I think the reason it may have those properties is because many Vit D supplements also contain Sunflower, Safflower, or Soybean oil, which must absolutely be avoided. The same goes for Zinc, it is a necessary nutrient for the human body to function, also vital in the production of testosterone, so you are likely doing more harm than good by avoiding it. Obviously I exercise too, which we should all be doing. Especially high intensity sprinting or any type of cardio.

*None of this is medical advice. I don’t expect anybody to cure their PFS with this information, all I am doing is sharing what has helped me. If you decide to purchase these products, you don’t have to buy the brands I listed, you can buy cheaper options, but make sure they are decent quality. I would suggest not to buy any supplements from Walmart.

I will be awaiting questions from everyone.

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Welcome to the forum @KingHenryV, and I’m glad you’re feeling better!

The 5AR enzyme usually takes a while to ‘get back online’ so to speak, so it seems like there are many who see improvements in the first few months regardless of what they’re taking or doing. That’s not to discount the experience you had, but it seems like you recovered in a relatively common time frame.

Keep us posted on your progress - hopefully you’ll get to 100% soon.

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…What? Am I living on a different planet than you? After looking at these forms for months, it seemed to me that the consensus is that there is no proposed treatment or cure for PFS, the cause is unknown, and most people are left wandering in darkness looking for answers on how to get better. Now I am being told that I recovered within a “common time frame”. Some people have been dealing with side effects for years, and some are getting worse as time goes on. I’d suggest you to have a look at the ratio of recovery posts, to posts of people asking for help and lamenting their suffering. I assure you it is not a large number. Please explain this discrepancy.

There’s no treatment or cure, but the mechanisms behind PFS is starting to become more clear. Much more research is needed, but we’re not in the dark anymore.

When you have a chance, please have a read of Baylor’s research results.

If you’re interested I’d also check out @axolotl’s literature review. It’s a long read but provides an excellent overview of the scientific concepts and how AR overexpression provides a good explanation for the multi-systemic nature of PFS, along with some of the other key features including “the crash”.

This is why we’re not allowing personal “theories” or speculation on the forum anymore, because it creates the impression that there’s no scientific progress about this condition, and leads people down unproductive rabbit holes (and to desperate self-experimentation).

Both of these statements can be true at the same time. Anecdotally, “natural” recovery within a few months of symptom onset seems common. At the same time, the group that still has symptoms past one or two years find it harder to recover.

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I don’t see how AR overexpression would cause the symptoms of PFS, since many side effects involve reduced sexual function. If they are overexpressed, then that would allow the androgens to have a greater effect on the body, but in the case of PFS that seems like the opposite of what’s happening.

While that makes intuitive sense, it is too simplistic. There is evidence that suggest a u-shape curve, where at certain points along the curve under- and overexpression result in similar disease states (broadly speaking).

AR overexpression in PFS patient tissue has been confirmed by two studies. Plus, we are collaborating with a leading AR expert (in connection with refractory prostate cancer) and a researcher who has identified a new form of androgen insensitivity, who both find it likely that AR overexpression is key to understanding this condition. Save to say, they understand androgen signaling and the role of the AR.

Please see here for a very detailed overview: https://www.propeciahelp.com/wp-content/uploads/kalins-pdf/Post_Androgen_Deprivation_Syndrome.pdf

Apparently there is more information on the condition than I realized.
Has anyone figured out what causes someone to “crash”?

Good question.

That information is very helpful in the context of scientific analysis, but do we know how to prevent it from happening in people? It seems like nobody can predict when the crash will occur. How do we know what things to avoid?

When it comes to preventing the crash from happening in the first place, we can only speculate.

But we have more information about subsequent crashes. This is anecdotal, but it seems like a range of hormone-modulating drugs and supplements can have negative (and paradoxically, sometimes positive) effects, and can lead to further crashes.

Thank you for all of this information, it has been extremely helpful. Have researchers come to the conclusion that PFS is permanent? If there are epigenetic changes, then it should be possible to reverse them?

This condition isn’t “permanent” , it’s however a very difficult puzzle that sometimes takes a very very long time to solve. Look at the many recovery stories

I have looked at many recovery stories, and I don’t think I have seen one where somebody was 100% recovered. They almost always have lingering symptoms, and occasional relapses.

I never said 100 percent (even though there are) but there are a lot of 80, 90, or 99 percent ones varying from hormone usage to other lifestyle changes. It’s really varied obviously

Whether you believe them or not is another story

All we know is that they can be very long lasting. There are stories here of people having PFS for over 20 years. I just passed the 11 year mark myself.

Yea, there are many recovery stories here. But it looks like many of them happened within the first year or two. People who say they’ve recovered after 5+ years, well… but like you said, it’s tough to say if they got back to 100%, or just recovered enough to be happy with their health. (It can be hard to remember what your health was really like after enduring 5+ years of a terrible disease).

I don’t want to make this into a “are the recoveries real” thread, but all we can say is that people have reported recoveries, but it’s all anecdotal at this point. No research has been done on this.

After 11 years, how much have you improved from 0 to 10 in every dimension?
(sexual, physical, and mental)

My story is here - In it for the long haul?

Biggest improvements have been anxiety and brain fog.

hey i kno wits not a recoveries thread… but did there hear of any recoveries of people that had hard flaccid from fin/dut, or total fibrosis/ ED? or is implant the only way to recover? maybe some tried stemcells, oxygen therapy, prp injections?

I don’t want to derail @KingHenryV 's thread.

But there are definitely recovery stories for ED. Trouble is, they’ve not been shown to be repeatable. After over 20 years of people trying expensive experimental treatments with no repeatable results, it’s safe to say that we need a more targeted approach. The Baylor study gave us the first clear lead on what’s happening to us - now we need to pursue it.

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