I'm convinced it's autoimmunity

General Discussion
#182

Just a follow up on the autoimmune angle. I first took Finasteride in my twenties and stopped for two years, when I did go back on Finasteride three months after resumption I developed multiple alopecia areata and Alopecia Barbae patches. At the time I wasn’t aware of this condition and went to my GP who told me my body was attacking itself and he referred me to a specialist.

She had told me it was autoimmune issue and asked me to trace my steps back three months from when it started and asked if I was in an accident, did I have high stress levels from an event that occured in my life that time, did I visit the dentist for treatment, I replied no to all but told her that was the exact time I resumed taking Finasteride after a two year break.

Don’t recall her making much of it.

But perhaps my experience shows there can be a connection between Fin and autoimmune issues

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#183

i would also like to add to this theory. i took accutane before developing pssd. after accutane my acne would always come back along with oily skin. however after getting pssd from a single dose of trazodone, my acne and oily skin has been completely non existent ever since. this proves that the body is constantly fighting itself off. during my windows my acne always comes back, along with oily skin.

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#185

Hi, I’m also in Hungary. Did you find a doctor for treatment? Are you recovered?

#186

I believe autoimmune disease could explain how some people get PFS from just one pill.

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#187

This is definitely worth a read. It explains the cognitive deficits, emotional fallout and resulting physical destruction /symptoms as a consequence of the dopamine system being progressively damaged/attacked. Which is certainly how mine and a few others worsening symptom list is playing out. It also explains the fluctuations in disease activity experienced by everyone which is typical of how an AI disease manifests. Like all AI diseases some benefit from a plateau after an initial dramatic onset.

Positively it shows that this condition is treatable. Knock out the antibodies and disease activity will subside, even remission and restoration could occur.

No one with pfs has ever trialled AI drugs. Saying that the American lawyer had an infusion of the type which is often used to dampen AI disease flare ups and he had a spontaneous recovery. I might be wrong, my recall is terrible.

It would also explain my periods of stability when I was on AI drugs for rheumatoid.

In my opinion this is very promising. I hope this post does not go against forum standards as will no doubt be deemed as a positive

Laz

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#188

I personally subscribe more to the theories about dysfunctional ARs and NS depletion. However, the immune system’s role in PFS definitely can’t be ignored. Many of us have a significantly lower basal body temperature (as if we have a persistent, low-grade infection) and I’ve experienced various, strange food sensitivities (sometimes crash-inducing) which I’ve been able to successfully manage by following a low carb/AIP diet. And with the severe muscle wasting I experienced, some of my doctors in the beginning were very keen on exploring possible AI diseases.

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#189

@Renegade you’re lucky to have Drs willing to explore these areas most won’t even entertain pfs. We’re any open to prescribing an associated drug amd hows your muscle wasting now

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#190

Oh they certainly didn’t want to entertain any “PFS nonsense.” I learned very early on that you have to keep that shit to yourself. I had to explain symptoms under the guise of other potential pathologies they already recognize - then they tend to jump all over it.

But without coming to any diagnosis, no doctors were willing to Rx me anything that address muscle mass. Regardless of how much I lost, I still look like a normal, light-build guy to them, so they just chalk it up to vanity/insanity. They don’t have the before picture (due to moving from another state).

My muscle wastage has mostly stabilized at a very low baseline. Soon I will be getting back on Trt and self-administering (cycling) additional steroids. I believe that’s the only chance I have at getting back to normal in the near future.

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#191

I was amazed that u seemed to have got through to some Drs, your strategy of not mentioning pfs seems to be the way to go unfortunately… Good luck with the trt and steroids, unfortunately I don’t respond positively. Keep us posted

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#192

How would having high antibodies against the D1 receptor explain sudden and severe physical symptoms, which occur overnight in many patients, such as genital atrophy, shrinkage, muscle atrophy, etc? Even some of the physical symptoms you personally have, like gum recession?

It also explains the fluctuations in disease activity experienced by everyone

My PFS doesn’t fluctuate unless I do something which has an androgenic/anti-androgenic effect. I’m not saying that’s the case for everyone, but we can’t say “everyone’s symptoms fluctuate” if not everyone’s do.

No one with pfs has ever trialled AI drugs.

There’s plenty of examples of patients taking immunosuppressive supplements with minimal effects. Happy to provide links but you can also just search for “immunosuppressive” and find plenty of results.

Sorry to rain on the autoimmune parade.

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#193

Fair point/s and thanks for your time Mitch explanation from my own experiences is as follows , gum , muscle pains, weakness and different feelings in tissue appeared overnight but it took months for these to transpire into visible physical changes. It was the same with my libido/dick. With rheumatoid I woke up one morning in pain, with swelling and it then took months/years for the disfigurement in joints to become visible. A correlation. My health baseline is awful with pfs, eg terribly low mood, weak body, organ functions are poor, global pain, etc these spike to extreme levels every few days causing more damage, by listening to my body I observe that it’s linked to what I consume and not restricted to androgenic/alpha 5 reluctose though they cause more profound reactions The simple action of digestion can be a trigger and causes stress then extreme anxiety, chronic fatigue, pain etc.
When I talk about about immune suppressents I refer to biologic such as T cell blockers (I should have been more specific) like tocilazumubab/ humira/kineret which I’ve been on, These alter the immune system and what it targets, while on them my pfs was less prevalent. I doubt many have been on such drugs. NsAIDs are simply inflammation suppressors… As one of the 1st trial UK patients I remember being put on biologics in the late 90s in the run up I felt awful with some unexplainable feelings such as insomnia/anxiety/suicidal ideation (I’d recently started propecia) I didn’t declare these new health issues to the RA professor. I recall it vividly, after a 4 hour infusion these symptoms disappeared and I felt physically strong with a feeling of wellbeing looking back I obviously had wider pfs fallout. From cessation of such drugs pfs has dramatically worsened. I appreciate your drawing on the scientific evidence however I do recall reading somewhere that pfs can cause AI/inflammation problems. One thing is for sure pfs symptoms are variable but I’m convinced that in my own case AI plays a role (in part) in symptom severity. Even Libido returned whilst on these drugs. I appreciate epigenetics/gene expression is key if not the biggest player in this but I also believe (on my own experiences) that certain AI drugs can help. There is still alot of unknowns with this disease and what works for one can actually do nothing, if not worsen another but I do believe there is mileage in this hopefully upcoming research (thanks to you) will clarify the current unknowns.

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#194

I’ve reached out to mods before explaining how I’ve seen top doctors including at Mayo Clinic and I’ve been told this is autoimmunity. Could be against a g coupled protein receptor, anything really and one of the hardest parts about determining novel autoimmune diseases is you have to test for specific antibodies which can be near impossible. So many people think it’s autoimmunity. So many think it’s epigentic / overexpressed AR. So many think it’s a combo of both. But autoimmunity explains this better than anything. I get from a research funding standpoint genetics and epigenetics is sexier and gets more funding.

It would explain the “crash”, it would explain how people develop this weeks off the drug (adaptive immune system), it would explain total body symptoms, it would explain how many people have “windows” or better days or worse days (even though all of mine are hell). It would explain how not all symptoms are uniform. it would explain how this is rare. It would explain how a select few minority overcame this.

I find it perplexing that the mods here shut down the idea so quick. Actually, all mods except one who private messaged me on my email. Honestly, searching across all forums, all websites, you’ll find varying reactions to immune suppressants, anti inflammatories, etc and many positive ones and some with immense relief of symptoms.Even long covid now is confirmed to be autoantibodies. So many people with long covid feel a little better with corticosteroids but those who take massive doses of immunosuppressants can control symptoms (very familiar and work with first hand). The drug BC 007 in trial that neutralizes autoantibodies ppl say they felt “reborn” again and completely back to normal. So no, not everyone will have success with immunosuppressants cause dosage and type matters and clearly this is novel.

There was a post here DEEP in the archives where someone asked Merck if finasteride could cause autoimmune reaction and they said they couldn’t disclose that information. Fishy.

And no CRP ESR TNFa etc are dinosaurs in diagnosing autoimmune conditions. Many many examples exist where inflammatory markers are normal.

I just think there’s an Avenue here that should be explored and if the PFS foundation doesn’t want to explore it that’s fine but members trying to explore it shouldn’t be shut down or have it be called the “autoimmune parade” cause I can assure you the epigenetic parade will be parading around for 50 years

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#195

Agreed - an autoimmune condition is a worthy hypothesis that warrants further investigation. Also corroborates well with the relief many feel when their immune system is compromised or activated by other conditions.

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#196

I think auto immune could also explain why accutane and ssris cause these conditions.

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#197

If it was simply an over expression why do some get worse and some fluctuate. Surely ude drop to a lower baseline with less functionality and that would be that However my brain isn’t anywhere near as good as it was so I expect gene expression isn’t that straightforward and lowered functionality would probably have ramifications across many aspects of ones health.
My gums have been inflammed constantly for 5 years. I mean 24/7 every day. That has to be AI and ties into when the multi system atrophy started. My muscles/soft tissue/cartilage burns and pains me in the same way as my gums do.

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#198

There are certainly some aspects to PFS which make the AI theory plausible

  • For some PFS happens after REstarting finasteride; maybe the adaptive immune system has been primed by the first period of finasteride usage (like a vaccination)
  • An explanation for the first time users developing PFS would be their immune system has already been primed by another 5ARI, in their diet for example (herbs etc)
  • People getting PFS from a single, or just a few pills
  • The American guy feeling substantially better after high doses of methylprednisolon; a strong AI suppressor

I’ve probably come across more supporting phenomenons, but can’t remember at the moment.

On the other hand, if PFS would really be treatable with an AI suppressor we would probably know by now just by coincidence.
More plausible would be there’s permanent damage through an AI mechanism, which cannot be cured by AI suppressors because the damage has already been done (like in multple sclerosis for example).

But Laz, regarding why people get worse or fluctuate, I think there’s a clear explanation. The male body has been used to working with a normally functioning androgen system for years and then suddenly it’s all messed up, some tissues and systems will show marks of deterioration over different time frames because they slowly get worse. Many tissues need high levels of androgen stimulation to keep functioning.

I’m personally not convinced it’s AI mediated but it’s certainly still a possibility.

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#199

I like it, it’s very plausible

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#200

Hey man, no doctor could help me much. Instead i gone my own way and i’d say i recovered up to 85%

My sides that leftover:

  • soft glans when erect
  • a bit still less ejacuation volume
  • testicles still shrunken, though they seem also have started to regrow a bit
  • dry, wrinkled fingertips
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#201

Hey @andras33

I think I am in similar situation to where you were sometime ago, I would have considered myself to be in the quite low category of suffering to others on here until after taking just two capsules of strong Bulgarian Tribulus which really messed me up and had me climb a few more steps on the PFS severity ladder.

Out of the many more complications I got was what I perceive was a drop in testosterone as I can no longer bulk as much in muscle mass as pre Tribulus and my facial hair which I would shave daily now is every 3 days.
I did not do any blood tests but wondered if you felt a drop in testosterone and since recovered?

It’s been six months since I took Tribulus and while some issues have improved somewhat I rue the day I ever took that supplement.

#202

I also believe it’s autoimmune. Whenever I have a flare in my PFS symptoms, I notice my autoimmune symptoms start to worsen. When I was given a biologic (Taltz) to treat my Ankylosing Spondylitis and Psoriasis, my PFS symptoms started to get a lot better. I also notice flares when I am stressed out. There is a complex relationship between the nervous system and the immune system. I developed POTS Syndrome from severe stress, terrible sleep, excess caffeine, and neuro-inflammation. I approached this by doing things listed in my protocol, taking everything possible to reduce stress (CBD, GABA, Magnesium, Valerian Root, Melatonin [sparingly] ) meditation, improving sleep. Only one or two cups of tea in the morning/early afternoon, no coffee at all. I don’t know exactly what happened to my neurotransmitters, but I probably have excess glutamate or a sensitivity to it. I take Lithium Orotate which is extremely underrated in my opinion – it is know to regulate almost all neurotransmitters, especially glutamate. I also take all of the other trace minerals.

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