Boston,
I was wondering the something myself??? I sure hope he in the clear like I said at this point he is a very health/normal boy, hopefully with the on going research some light will be shed on this subject… Also I would like to say that I am not as heavily effect as some on this fourm.
You’d think finding a cure would be in their interest as well.
Actually you’d think just the opposite. A treatment would by definition prove the existence of the condition. Please.
I wonder does Merck secretly have a cure that they will only release after they have being dragged through the courts. They must know that Finasteride is going to cause them a lot of problems in the long term.
No. If they did have a cure they would some how leak it out to some doctors so that we could get cured and then the whole situation would die down.
On another note, I wonder if our problem is in any way related to the neurological problems caused by statin drugs that is recently gaining interest in the scientific community. Statins lower cholesterol and thus probably hormones, finasteride lowers DHT. I wonder if someone on statins came off if they would have some sort of crash like us.
We have all “heard” rumors. I’ve heard everything from “The Italy studies did not find what they were looking for so awor had to search for a new labs to do new tests” to “They found the issue but were not approved to test potential treatments in human trials” to now “They just dont want Merk to know what they found”…
Either way it is kinda concerning that over the past year basically nothing has been updated. 7 weeks after the Italy conference and we don’t even know what that was all about…
Wow, that’s all some pretty wild speculation.
I don’t think because there aren’t any recent updates it necessarily means nothing is happening. Maybe it just means there’s nothing to update right now? Considering the pace of scientific research I’m personally not really troubled by that and it hasn’t changed my level of confidence in those in charge.
Only thing I’d say for sure in response to some of the above posts is that Merck isn’t sitting on a cure waiting for the Fin cases to go through the courts. lol
More specifically dgreene statins inhibit the HMG-CoA reductase. An enzyme.
theheart.org/article/1162047.do
Autoantibodies against 3-hydroxy-3-methylglutaryl-coenzyme A reductase in patients with statin-associated autoimmune myopathy.
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The equivalent for us would be auto antibodies against 5 alpha reductase. However, I have yet to see someone be diagnosed with auto antibodies against 5ar or the Androgen Receptor, or DHT, etc.
Yeah no ones been tested.
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Anyone willing to go get tested? I asked Oscar to since he’s a big proponent of auto-immunity, but he’s ignoring me. If, hypothetically it does end up being autoimmunity, we may not be so out of luck:
I have emailed this man amammen@jhmi.edu Andrew Mamman from the Johns Hopkins University, School of Medicine in Baltimore. He was involved in the Statin research i posted above.
Nice. It seems Johns Hopkins is the place to go for rare and undiagnosable diseases. I’ll do some research too and see what I can find.
But if it’s cured there would be no down side to giving the medication a shot. Even if you get really unlucky and get PFS, do whatever the cure is and you’re fine again (not that simple but that’s how they could spin it). It would be a good PR move, in my opinion anyway. I get where you’re coming from as well, though.
Johns Hopkins is also THE leader in epigenetic research.
Ditto,
Someone tell me how I can donate. I’m willing to set up a £10 direct debit monthly. I know it’s not a lot but it’s all I can guarantee never bouncing a direct debit for on a bad month. I’m self employed so my wages aren’t stable but my debts are lol!
Total ignorance and extremely disrespectful towards awor, the Foundation, and others who’ve donated their time and money. There’s been major progress over the last year which awor was nice enough to update us on, considering people are now calling his updates “basically nothing.”