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Once a death sentence, cardiac amyloidosis is finally treatable

nytimes.com

11–20 of 39 posts

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#11
post #3

Robert Jordan, author of the "Wheel of Time" fantasy series, died of this disease in 2007. https://en.wikipedia.org/wiki/Robert_Jordan#Illness_and_deat...

That was my first thought, too. I guess the condition's name is pretty memorable.

It's been almost twenty years, so it shouldn't surprise me that new research means that people who died in the past maybe could have survived longer if we had known better. And, of course, Jordan was going to die some day. But I certainly wish he'd had more time.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#12

a) average age is 77 b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months c) only for ATTR (not AL) amyloidosis d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs for sure there are some genetically…

What's with the kneejerk takedown?

a) Yes, it's more common in older people. A lot of old people end up in hospital

b) 30% fewer deaths and hospital admissions is a good thing in my book

c) The more common form according to my wife

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#13
post #9

a) average age is 77 b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months c) only for ATTR (not AL) amyloidosis d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs for sure there are some genetically…

if you can't afford Tafamidis, you could probably get away with taking - Flufenamic acid - Valtoren (Diclofenac) - Diflunisal off-label. https://www.benthamdirect.com/content/journals/cdtcnsnd/10.2... IANAD but I believe that Valtoren has the least side effects, but in general since they're all NSAIDs they have been tested for long-term analgesic use, so they're relatively safe and quite inexpensive.

NSAIDs can kill your kidneys.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#14
post #9

Earlier quoted context omitted.

if you can't afford Tafamidis, you could probably get away with taking - Flufenamic acid - Valtoren (Diclofenac) - Diflunisal off-label. https://www.benthamdirect.com/content/journals/cdtcnsnd/10.2... IANAD but I believe that Valtoren has the least side effects, but in general since they're all NSAIDs they have been tested for long-term analgesic use, so they're relatively safe and quite inexpensive.

NSAIDs can kill your kidneys.

And your stomach lining. Even better if you’re already on a DOAC for Afib.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#15

a) average age is 77 b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months c) only for ATTR (not AL) amyloidosis d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs for sure there are some genetically…

What's with the kneejerk takedown? a) Yes, it's more common in older people. A lot of old people end up in hospital b) 30% fewer deaths and hospital admissions is a good thing in my book c) The more common form according to my wife

> The more common form according to my wife

Not sure what relevance the source has here, but it’s not correct. Primary (AL) is the most common in the developed world and secondary (AA) elsewhere. There are some foci of ATTR but it is by far not the most common.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#16
post #15

Earlier quoted context omitted.

What's with the kneejerk takedown? a) Yes, it's more common in older people. A lot of old people end up in hospital b) 30% fewer deaths and hospital admissions is a good thing in my book c) The more common form according to my wife

> The more common form according to my wife Not sure what relevance the source has here, but it’s not correct. Primary (AL) is the most common in the developed world and secondary (AA) elsewhere. There are some foci of ATTR but it is by far not the most common.

I should have mentioned my wife is a physician, apologies. The true prevalence of ATTR is not known since it's only been investigated for recently as described in the article. If you look up recent data you'll see a big difference.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#17

a) average age is 77 b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months c) only for ATTR (not AL) amyloidosis d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs for sure there are some genetically…

What's with the kneejerk takedown? a) Yes, it's more common in older people. A lot of old people end up in hospital b) 30% fewer deaths and hospital admissions is a good thing in my book c) The more common form according to my wife

“Fewer deaths” is a meaningless concept. Every human being inevitably dies. If you prevent someone from dying today, you have only delayed the inevitable. In some cases this is extremely valuable; if you save a newborn baby, that baby could live eighty more years. If you save a 77 year old, they will not live eighty more years. And if you repeatedly save elderly people from natural conditions that could easily kill them, their quality of life gets worse and worse over time as their bodies wear out and decay and the side effects of these interventions build up. Which is why the vast majority of doctors have DNR’s.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#18

Earlier quoted context omitted.

What's with the kneejerk takedown? a) Yes, it's more common in older people. A lot of old people end up in hospital b) 30% fewer deaths and hospital admissions is a good thing in my book c) The more common form according to my wife

“Fewer deaths” is a meaningless concept. Every human being inevitably dies. If you prevent someone from dying today, you have only delayed the inevitable. In some cases this is extremely valuable; if you save a newborn baby, that baby could live eighty more years. If you save a 77 year old, they will not live eighty more years. And if you repeatedly save elderly people from natural conditions that could easily kill t…

[flagged]

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#20
post #19

>They are incredibly expensive, costing $250,000 to $500,000 per year. No way they cost that much to make. Big pharma is out of control.

The first dose costs billions to make, every dose after that might only cost a few cents. It all averages out.
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