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 transmitted younger patient for whom this is important. But there are a lot of frail older people who are getting diagnosed with wild-type ATTR amyloid for...questionable benefit at massive cost. IMO, the jury is still out
dnautics · 35m ago
if you can't afford Tafamidis, you could probably get away with taking
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.
pfdietz · 5h ago
Robert Jordan, author of the "Wheel of Time" fantasy series, died of this disease in 2007.
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.
dogmatism · 48m ago
it's not clear if he had ATTR or AL amyloid
LoganDark · 2h ago
It's incredibly good to see Medicare covers these drugs, considering how expensive they are. Meanwhile, my diabetic friend can't get their insulin covered by Medicaid...
pfdietz · 1h ago
It's expensive because it's categorized as an "orphan drug". I have to wonder if the underestimation of the prevalence of CA was part of that.
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 transmitted younger patient for whom this is important. But there are a lot of frail older people who are getting diagnosed with wild-type ATTR amyloid for...questionable benefit at massive cost. IMO, the jury is still out
- 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.
https://en.wikipedia.org/wiki/Robert_Jordan#Illness_and_deat...
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.