Xhorndog's thoughts on PFS

General Discussion
#1

I think finasteride is the trigger of illness that we all have in common, with various predisposing pathophysiologies, and various sub-profiles of affected patients. While most people’s systems adjust or compensate to the hormonal upheaval caused by finasteride, some people, perhaps those already on edge because of undiagnosed conditions (hypothyroidism, or sublicincal hypothyroidism, for example–things that finasteride-prescribing doctors do not think to screen for, and the finasteride bottle does not forewarn about) get over-run by this drug and all hell breaks loose. For some, the melting point may come with the onset of increased stress/trauma/lack of sleep, etc. What could normally be handled by the system, cannot be dealt with by a system already under duress by finasteride. Those already closest to their breaking point may get hit the quickest (those who were radically affected after 1 dose, or 1 week, or 1 month). A friend of mine took finasteride for a brief time many years ago and was unaffected (as far as he could tell). Now, he is working ridiculous hours, travels extensively, does not necessarily eat well, does not sleep well…and I think that if he took finasteride in this present state, it would screw him up. It would overwhelm his system, and the degree to which it would send him spinning would determine just how deep he would fall…

I believe that there is physical damage exacted by the drug which is well documented (prostate & penile tissue), as well as immune disregulation from endocrine disruption. From there, the immune and hormonal upheaval act as a gateway to all sorts of malaise. Unless any acquired conditions, infections, deficiencies, etc. are systematically removed, and at root level…and unless physical structures are repaired, or allowed to be repaired by the removal/treatment of any impeding conditions/infections and the like, the system will be in constant upheaval. Yes, this is intentionally vague speculation, but it’s based on some very logical things: the studies we have on the physical effects of finasteride (and it’s androgen deprivation) on sexual organs, as well as the knowledge that interfering with hormones impairs immunity. What we haven’t necessarily connected completely, is just how badly finasteride upsets local immunity and inflammation in the prostate. That could very much explain the persistent malfunction of the prostate organ which yields symptoms of lowered ejaculate volume, lowered ejaculation trajectory, E.D., sensitivity issues, low DHT, low libido, urinary issues (dribbling, frequency), etc.

I’ve tried to phrase this in a broad and somewhat abstract way so as not to turn this into a chronic prostatitis debate…so that maybe people who obsess only over hormones and the symptom of altered hormones might see this problem in a different light. I’m not proposing that I know the definitive treatment answer or any of the precise chemical pathways…but rather, perhaps we should stop looking at this problem as one that needs a single unifying theory and treatment. Perhaps some people have CP, and perhaps others don’t. But we might be stuck (in our theorizing) and our ill states, because we haven’t discovered and removed whatever obstacle remains in our individual PFS pathology. It might be Plyoluria/Zinc deficiency as in JN’s case. It MIGHT be. Don’t know how his story will play out. It might be that finasteride sucked his system’s ability to compensate for an underlying condition. (This wouldn’t mean that he didn’t have “PFS” or genuine PFS, it would mean that he found and reversed whatever finasteride triggered in him). It might be that others have similar anomalies in their systems that got exacerbated or exposed through finasteride’s endocrine/immune disruption (has anybody been able to answer why Ihatepropecia702 can have full-fledged sex by taking an antifungal—but still suffers from brain fog and libido?). And yes, it might be, that a subset of us, just as a subset of the male population in general, have contracted CP as a result of finasteride’s immune depression and catastrophic action on our prostates, which would explain the sexual/urological side effects. It’s not that far-fetched.

I’ve said it before, I’ve said it again: there are probably at least a dozen different profiles of PFS patients. We have some core similarities in symptoms, but then there are subgroups and subgroups of the subgroups. Sweeping statements like “DHT comes back online” do not describe us all. We don’t all have gyno (which is explainable from high estrogen, anyway, is it not?). We don’t all have brain fog. We do all seem to have some degree of sexual difficulties, and we did take a drug that altered the tissues of an important sexual organ, an organ that if removed, damages sexual function virtually irreparably: the prostate. And many of us do have thyroid complications. Those are just two clues…

…So…perhaps we need to separate some of the types of PFS…and those who recover from some of the types of side effects…it doesn’t have to be all or nothing, black or white.

#2

This again hits the theme, that although we are brought to this forum by the commonality that we took finasteride and experienced severe, permanent sexual side effects along with general ill-health and other complications, not everyone is 100% alike in their symptom list, and not everyone experiences relief or recovery via the same treatment. There are multiple subtypes/profiles of PFSers, with core commonalities, but also a lot of variances and idiosyncrasies.

I am reminded of an e-mail from a prominent doctor (who I will keep anonymous–if you recognize his writing, please refrain from publishing his identity–and debate his concepts on merit, if need be). And I think it reconciles how some people might recovery by finding THEIR finasteride-triggered health/immune/stress issues (like thyroid dysfunction, Pyroluria/Zinc deficiency as an example) with the PHYSICAL damage left behind by finasteride usage/androgen deprivation (the fibrosis that multiple urologists have uncovered on my finasterided penis and the prostate treatments + penile rehabilitation that one has now issued).

The aforementioned anonymous doctor’s e-mail:

[i]As a preface, I use the term “signal” to mean any intercellular molecule that is used to transmit data or commands between cells. This includes neurotransmitters, hormones, cytokines, eicosanoids, etc. Cholesterol, itself, for example, is a hormone/neurotransmitter in the nervous system used to determine synaptic links. The signals and cells involved form fluid circuits within the body. Mapping the circuits in the body helps one understand their effects on behavior and health.

For my patients, I may have to extend the analysis to up to 8-32+ steps deep. The analysis includes complex interactions between signaling and metabolism in the nervous system, endocrine system, and immune system. For this, one would need to integrate knowledge in cognitive and affective neuroscience, psychology, psychiatry, neuroendocrinology and endocrinology, psychoneuroimmunology and immunology, metabolism, and nutritional science. The deeper an analysis one can make, the easier it is to see the underlying pathophysiology involved in each individual suffering from post-finasteride syndrome and why it is prolonged. This analysis also helps determine the individualized targets for treatment for each individual. There are numerous targets.

Generally, most individuals do not suffer from adverse effects from Finasteride. Their system can compensate for the myriad signaling changes that occur. On the other hand, each individual suffering from post-Finasteride syndrome generally has pre-disposing pathologies which are compensated for by various changes in the system. The compensation of these problems allows one feel to feel healthy. However, this compensated system is disrupted by treatment with Finasteride’s wide-ranging systemic effects, causing one’s health to deteriorate like a stack of cards that falls apart.

The predisposing factors are actually highly complex and extend the breadth of medicine. This, plus the further complications added by Finasteride, creates a complex pathophysiology. This requires a complex integrated treatment to restore function. This is one reason simple treatments don’t work. Chronic illnesses are usually complex illnesses. And only a complex treatment can adequately address the pathology involved in order to restore health. Multiple metabolic and signaling targets in the nervous system, endocrine system, immune system have to be identified and addressed.

The syndrome is prolonged for numerous reasons. For example, structural changes occur (such as atrophy, fibrosis, or even cell death). This causes permanent problems if structure cannot be restored once Finasteride is discontinued. This is probably the most difficult problem to address. Additionally, multiple pathological positive feedback loops in the signaling circuitry within and between systems develop. A positive feedback loop creates a self-sustaining problem. Each loop needs to be broken in order to restore function. Also, some cells in the system naturally have a prolonged response to stresses that may last years. Examples include glial cells, certain neurons, and immune system cells. Moreover, psychological/social/environmental problems can modify functional status and structure within the nervous system, perpetuating or magnifying the problems caused by Finasteride. Etc. Etc.

Each individual with post-Finasteride syndrome is different both in the predisposing factors and the changes that occur with Finasteride. It is a highly complex condition requiring a complex treatment. As such, the treatment has to be customized for each patient.
[/i]

I like how this approach doesn’t claim to have one single magic bullet answer; it acknowledges that “…[our systems are] disrupted by treatment with Finasteride’s wide-ranging systemic effects, causing one’s health to deteriorate like a stack of cards that falls apart.”

It points to finasteride as the trigger.

It implicates the immune system, which feels intuitive from our laundry list of symptoms.

And it rather chillingly refers to “structural changes…(such as atrophy, fibrosis, or even cell death)”

This doctor has not, to my knowledge reversed any PFS cases (at least not the patients that I know), but his concept off immune/inflammatory chaos jives so perfectly with the variety of symptoms and case studies we have, and yes, the CP angle that I’d venture a certain percentage of us require attention on.

This reconciles how some can crash so immediately…while in others who tolerate finasteride a bit longer, perhaps it’s the toll on the physical structure that crashes the genital system. In either case, the longer one goes without proper erections, the greater the atrophy.

In theory, repairing any physical damage (again, prostate and penile fibrosis = two likely, logical targets both from the research studies on finasteride and from doctors who treat these organs which have been declared damaged) might be a first step…and not necessarily an easy step. Concurrently, one can attempt to investigate via an integrative/functional medicine practicioner other underlying conditions…but perhaps not until the basic impediments to systemic well-being (the sources of chronic inflammation or under-production of DHT) are removed, can one see what remains to be fixed. Perhaps once or IF physical structures can be repaired, one can try a restart cycle or T3 treatment, for example. Just some thoughts…

#3

I also believe that finasteride may have gave us unique problems. I.e. we are not all suffering due to the same causes. Given the link with hormones, immunity, inflammation and whatever else could be involved, i am very surprised no doctors have tried low dose naltrexone on any PFS patients.

#4

Joetz is on it, or has been on it.

#5

Yeah, Joetz gets minor improvements - more people should be trying it.

#6

i am believing that for the moment.

a big range of symptoms different from one another but all linked with immune disorder…
all had a previous weakness

  • JN was more prone to develop chronic fatigue syndrome
  • it triggered Multiple Sclerosis for another one (immunue disorder again)

all of us have sexual sides because the genitals are more DHT dependent.
thus a lot of prostatitis diagnosed but it doesn’t mean everybody has it.
but the hormonal changes could have had effects in a lot of others tissues depending on the previous weakness
they had.

this guy (a patient of marshall protocol) had chronic fatigue syndrome. look how all of a sudden his symptoms
occured, he describes it as a crash. some symptoms are clearly alike brain fogs.
bacteriality.com/2007/11/10/interview10/