ALZHEIMERS NEWS-THIS ONE WORKS BETTER
there are now 3 anti amyloid drugs that will be soon available to lower amyloid plaques in the brain
now lilly will be seeking fda approval in a month or so for its donanemab not yet brand named yet
review
in alzheimers disease amyloid plaques accumulate in the brain followed by tau proteins unwinding and forming tau tangles followed by inflammation
all three cause the brain cell death we see in alzheimers disease
with anti amyloid therapy you get a monoclonal antibody that binds to amyloid and removes the plaques
all three do this
donanemab does it better than leqembi does it better than aduhelm
donanemab binds to a different part of the amyloid plaque and removes it easier and quicker
eg over 70% of folks treated in trials who got donanemab had most of the amyloid removed within 12 months
almost all of them had it removed by 18 months
aduhelm my drug works slower since it removes it differently
but by the time i finish my clinical trial in 13 months i will have received over 40 months of infusions
my amyloid in the brain should be mostly gone on my last amyloid pet scan at that time
it seems donanemab lowers cognitive decline by 1/3
the other two is slightly less than that at around 25-27%
what we dont know is what effect does this have long term
does removing this amyloid plaque slow things down long into the future
do you have to retreat occasionally like you do with chemo of some cancers
or
do you do like you do with cancer treatment and do treatment only when it reoccurs
there is also more side effects with donanemab since it works better
there are more aria or edema and or microbleeds
3 people died while getting the drugs from these bleeds
there is a lot of folks who get this aria or edema 25% and or microbleeds 30% but it usually clears up and the treatment is resumed
a year or so ago when they were increasing my dose of the aduhelm to its maximum dose i developed bad headaches that were not totally relieved with acetaminophen
i also developed an ocular migraine that was associated with a bad headache and a wavy visual field that prevented me from reading or driving or walking around
it totally cleared in about 45 minutes
they stopped my aduhelm and i had 2 or 3 extra mris of the brain to insure i didnt have aria or edema and or microbleed
i did not so i restarted the infusions after a few weeks pause
i had more mris over the next few months
all have been negative
my mris look the same as the first one i had in 2010
i had almost monthly ocular migraines for several months
each one was less intense as the previous one
i have not had one for months now
knock knock
could this been caused by the aduhelm infusion
yes i think so
they biogen dont thinks so
i think i am right about this
dr daniel gibbs who wrote the book a tattoo on my brain and a blog by that same name had a massive bleed while taking aduhelm in the same study i was in
it required icu admission and high dose steroids to control things acutely
it took him months to resolve all his symptoms
at one point he couldnt talk
he was not allowed back on the study
now ask both of us if you had it to do over again would you take these infusions
you betcha i would say and he probably would to
if you were told that 3 of you who stated this study would die would you do it
you betcha i would and my guess he would too
my guess is that many if not all of us in the study would say
you betcha
we all know what we are staring at in the near future if we dont do something
we are willing to take the risk
i was discussing this with one of my doctors the other day
he said thats going to be so expensive can we afford it
can we afford not to i thought
we dont think anything about treating probably terminal cancer patients with expensive drugs that can harm them and sometimes kill them
we in the alzheimers world want to be looked at the same as terminal cancer patients
we are all terminal
some of those like those with cancer will die sooner than others
i have no doubt that something i have done over the last 13 years has slowed things down
i think it is
doing all the healthy things one should be doing
staying active socially mentally and physically
taking aricept or donepezil the day i was diagnosed
most neurologists would not have given it to me but luckily my neurologist had read the same small study i read that it may be effective in slowing down symptoms longer if started earlier in the disease
now a larger study has confirmed that also
taking aduhelm for the last 4 years
who knows what effect that will have on my disease in 5years or if i am lucky 10 years
here is a recent article on donanemab in the well respected journal nature
in july the full report of the clinical trial will be published for all to read and analyze
thats about the time the fda will probably approve it
then cms or medicare medicaid will probably approve to pay for it
then
folks will have to find some place to receive it
you have to
know the risks of taking this drug
know what its limits are
know what your other options are
right now there are none except for doing healthy things and aricept
i opt to do all three
aduhelm or leqembi or donanemab or a new one coming soon
healthy living
aricept or donepezil
doing nothing
just speeds up the disease
the organicgreen doctor
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