Any doctors who are suffering from PFS?

General Discussion
#35

Vetted? I just assumed the only criteria to be on that list was that they believed PFS was real lol.

There’s no way to treat this disease so if you’re saying they need to have extra special knowledge then that’s unrealistic to demand because nobody in the world knows what to do. If you’re going to one of these doctors the most you can expect is that they’ll prescribe you whatever drugs you wanna try to get better, you’re gonna have to do the research on your own. If they’re charging ridiculous fees and not even doing that then they’re just opportunistic scammers.

#36

Well, I suppose that’s valid.

As to whether it’s helpful to go to a doctor who acknowledges PFS but prescribes expensive treatments that haven’t benefitted anyone else is a other matter.

I guess you pay your money and make your choice.

#37

Evidence-based medicine has become a code word for big pharma sponsored evidence based medicine. According to that medicine, “there is no scientific evidence for the existence of a post finasteride syndrome.” According to that medicine, anecdotal evidence does not count, listening to the patients does not count, and insights informed by theory or just plain old critical thinking do not count. The only thing that counts is pharma-sponsored manipulated and fraudulent clinical trials - the gold standard for evidence.

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#38

Evidence based medicine means prescribing and diagnosing based on statistics. You diagnose based on evidence for a disease, and prescribe based on what will give your patient’s the greatest probability of a successful relapse of symptoms. There is evidence for PFS in literature. It may not be clear cut, defined, or understood, but papers out there address the psychological, cognitive, and sexual symptoms we are facing. This is considered “level 3/4 evidence” which IS a form of evidence, but not a strong one. Anecdotes are even lower forms of evidence, and they are level 5 pieces of evidence. I truly believe that one day, the real mechanism behind our symptoms will be elucidated, via RCTs, or discovering the molecular mechanism which would be the highest form of evidence.

What I’m getting at is that we do have evidence of PFS right now, and doctors should acknowledge that. In the future, I believe we’ll have stronger evidence and doctors WILL acknowledge that.

I know we got absolutely fucked by big pharm, but I don’t think many clinical trials are manipulated. I think the FDA is actually really strict in allowing what gets through to the market. We’re one of the unlucky ones that had side effects that passed through in clinical trials.

Less than 10% of drugs that make it to the human testing stage (and not many drugs make it that far) get to the market.

#39

Are you serious? Where do I even start. Viox, the opioid epidemic, all psychiatric drugs, osteoporosis drugs… I don’t know where to start bursting your bubble. Evidence based medicine has brought life expectancy down two years in a row now in the US.

Prescribing based on statistics? Who is doing the statistics and what is their goal? I hope you know enough about statistics and have played enough with data to understand how easy it is to manipulate statistics. Where are the missing, unpublished clinical trials with negative results?

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#40

Evidence based medicine has brought life expectancy down two years in a row now in the US.

Medicine, sanitation, etc. brought to us via evidence and trials have brought life expectancy from 45 in 1900 to 79 today. Yes, medications have strongly hurt us especially via the opioid epidemic, but they’ve also helped us in numerous ways…

I agree with you that many of these drugs caused terrible side effects or worse. But without any process of going through the FDA to approve a drug, we would all be dying of side effects from companies pumping whatever they want into the market. The FDA drug approval process is not perfect, and it will never stop side effects and other unfortunate events from happening, but I strongly believe it has protected us from things we’ll never know.

And for the record, fuck Merk.

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#41

I am not arguing against medicine (or sanitation) (although I am arguing against most chronically administered drugs with a few exceptions), nor am I arguing against using evidence or statistics. I am arguing that the term evidence based medicine is used to cover up fraudulent and manipulated science and statistics. Every single harmful or withdrawn drug or medical practice was based on “evidence based medicine”.

If I tell you that that safety and effectiveness of Electroconvulsive Therapy is based on good statistical evidence would you believe that or would you trust your intuition that frying the brain destroys higher brain function and would you go online and read the testimonials of tens of thousands of destroyed people?

Medicine should be based on more than statistics. That’s what I am arguing here.

Correction: it is OK if medicine is based on GOOD statistics, but we know that the statistics pharma AND ACADEMIA give us is not good!

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#42

I see. Thank you for taking the time to write that out. I think you and I are actually pretty much in agreement. I just don’t know how we as a society could practice on anything other than stats. Listening to the patient is a start, but where do we go from there? All I know is soon, the PFS denials will be history. We just need more studies, and I really think Baylor, Dr. Melcangi, and whoever else is working on it in secret will get us there.

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#43

The package insert of every drug is a document carefully worded with the sole intention to deceive. And it is sanctioned by the FDA. The current leaflet for Paxil for example, lists as side effects that are very common (stated as appearing in more than 1 in 10), sexual side effects. As far as I remember, when SSRIs first came to market for at least a decade or two, sexual side effects were listed as occurring in less than 10% of the population.

Now, I don’t know of a single person who has taken an SSRI - and I have personally known more than ten people - who didn’t have sexual side effects. Maybe an exception would be the rare person who lacks any awareness of their body whatsoever. So let’s say prevalence is 90%. And yet the leaflet says more than 1 in 10. That’s a perfectly accurate statement, isn’t it?

The present leaflet for Propecia in the UK, lists sexual side effects (not permanent but ongoing) as occurring in less than 1 in 100.

Nowhere in the leaflet is it mentioned that penis shrinkage is a side effect.

These leaflets are based on evidence based medicine, reviewed and sanctioned by the FDA. Bear in mind that they have also been amended multiple times. What went wrong in medicine?

These examples are not an exception. This is the rule in today’s evidence based medicine. I can give so many examples.

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#44

yes true.

#45

Ive been on Mirtazapine since Nov 2018 initially to help with sleep. Around Feb 2019 it basically didnt help much with sleep anymore but I continue to take 15mg nightly. I no longer have a crazy appetite… I gained weight back that I had lost initially from having no appetite. I’m now at a normal weight. I have almost no anxiety…which I think might be completely resolved. I’m battling with sleep and cycle ambien, klonopin and phenibut in an effort not to become tolerant to any one of them.

Things that have improved.
No more dizzynes, fatigue, weakness in legs, pins and needles, libidio is about normal as far as I can tell. (I was on Fin for 20 years so a lot of normal age related stuff has happened since I started taking it)

At the moment… sleep “might” be ever so slightly improving. I’m working really hard at TM meditation which I think is essential.

Vision is kind of wonky. I def have some derealization, some static in low light, blurry, etc… . but not terrible.

My mood is good and if I were to recover my sleep I would probably consider myself recovered and never come back here. I do believe that I have improved overall over the last 9 months.

#46

I can’t believe anyone on here would even try and defend the FDA they are as corrupt as the day is long.

Leaving aside everything else the fact that Propecia is still on the market after 20 years tells you all you need to know about the FDA.

image

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#47

Of course the FDA is swayed by big corporations, politicians, and lobbyists. Nothing is incorruptible. But would you rather face Merck, J&J, and Pfizer alone without any laws or regulations protecting you?

The FDA, or any regulatory body, will never have your interest 100% of the time. But they’re the system in place, and unfortunately the only thing we have to work with.

#48

Yes I rather no FDA because they are worse than useless.

When I took fin first I felt sick but I kept taking it because I understood it was “safe”.

If fin was not “FDA approved” I would of stopped taking it as soon as I felt sick.

You learn more about how dangerous fin is from forums like this than you will ever learn from the FDA.

Now if I ever take a new pharmaceutical drug I look online first before reading any of the official side effects because I now know you can’t trust anything the drug companies say.

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#49

Sounds like conspiracy theories. Some side effects are just very rare and make no sense. Why would isotretinoin, 5ARs and SRRIs would cause permanent sexual dysfunction but only in a small minority of men? Doesnt make sense at all. And its very hard to prove scientifically those effects on a clinical level.

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#50

The truth probably lies in the middle. FDA is definitely influenced by big corporations and the chairmen probably get really nice benefits from being on the board. But at the same time, they are ridiculously strict. I am doing a research project right now and I’ve had to change my project proposal three times because the IRB that gets audited by the FDA denied our group.

We are most definitely in the minority of patients with long-lasting effects.

almost 10 million people got prescribed Finasteride in 2014. There are only 5,000 members on here. Of course, more people have suffered than that, but it is still a rare position to be here.

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#51

It took 20 yrs worth of symptoms for me to tie it into PFS. How many more are out there who are undiagnosed! My mates father is on finasteride for prostate cancer and is now on SSRis for anxiety and Insomnia he doesn’t believe he has PFS,. 5000 is the tip of the iceberg.
I believe that’s are many more of us than we think. Normal blood test results etc don’t help.

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#52

When i was on a ssri, and the first months after i was sooo drugged from it that i didn’t even care about my PSSD symptoms, or anything else… like i lost my whole awareness, freaks me out if i think about it again. So it could be the case

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#53

Also people who get the non sexual side effects probably don’t even connect those side effects to Finasteride.

When I was on fin I suffered badly from the mental and physical side effects but I never thought I had a problem with fin because I had no major sexual side effects while on it.

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#54

I was the same as well, I started to get insomnia about 4 years after starting fin.

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