welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, January 6, 2023

alzheimers news-today lecanemab seeks fda approval


thats me answering questions from the moderator and the audience recently at a usc sponsored alzheimers conference
i and others diagnosed with alzheimers disease were on this panel

this week when i was getting my infusion of aduhelm at ulca the director of the research center asked if i would mind signing waivers to be interviewed and to have my picture and story used in news stories
i said sure
they took a lot of pictures of me as i was receiving my infusion
they also asked me a lot of questions about my story and my medical history

i was told it may be used in a upcoming story on cnn
if they do i will post a link here

in the last several months i have been interviewed once by bloomberg news and one by the financial times
they were more interested in my history and my thoughts on receiving aduhelm infusions and all the controversaries involved with its approval by the fda in its use in alzheimers patients
later the cms or medicare refused to pay for it
its not being used much right now except in research studies

now back to lecanemab

amyloid accumulates in the brain to form amyloid plaques
later tau proteins in the brain nerve cells unwind and forms tau tangles
both the amyloid plaques and the tau tangles damage and kill brain cells
the hope is by removing the plaques or preventing them to form it my slow down alzheimers  disease

aduhelm or aducanumab my drug binds to the amyloid plaques and removes them from the brain
they also may lower the tau tangles some in the brain
in a subset of folks in the phase 3 study of aducanumab in patients who had apoe 4 like i do and who received the high dose of 10 mg/kg dose there was a slowing of cognitive decline by about 22%
it also lowered tau tangle levels

the problem was the rest of the folks in the study didnt fare as well
they really hadnt given many folks in the study the high dose
i was just getting the high dose when the study was stopped prepandemic

now the study i am in called embark we are all receiving the high dose of aducanumab and will receive it for 3 years
this study along with others similarly being done will answer the question of how well it works

thats me last tuesday at ucla waiting to get my iv started and get my #25 infusion of aduhelm
im doing my impression of a teenager on their electronic device

now i am on the high dose at 10mg/kg and have had about 12 monthly infusions at that level in the embark study 
next summer when my amyloid pet scan is done i should not have any measurable amyloid plaques show up on my scan

my memory tests are already in the normal range

one problem with these antiamyloid monoclonal antibody infusions is that they can cause microbleeds in the brain called aria
some can be severe
some patients have died from them
i always say remember all 100% of us in the study will probably die with alzheimers disease soon if we dont do something to slow it down

aduhelm or aducanumab has a higher incidence of aria or microbleeds than the lecanemab study

the incidence of death in the lecanemab study is 0.8% while the incidence of death in those who got placebo or saline was 0.7%
not much difference
lecanemab works slightly different from aduhelm or aducanumab so that may be why the risk for bleeding is less with lecanemab
you will hear a lot of news reports about these aria deaths starting today and for a few weeks
i hope they do an interview with me about this 

i knew all about this risk when i signed up
i even know more about it now then when i signed up
i still have no hesitation to get the infusions

i am monitored real close with monthly neurological visits and frequent mris

last summer i started having ocular migraines that started occurring on a regular basis
they paused my infusions for a month and i have done serial mris since then to rule out any microbleeds
all my mris have been normal

i always said that if i was the one that got the bleed and died from it
i would want my family to know that i was doing what i wanted to do to slow this down and was doing my part to advance alzheimers treatment

i read where one patient who died from the bleed was given a blood thinner or clot buster which is a no no in patients on aducanumab or lecanemab

i have told my wife she to not let them do that to be if im unable to tell them not to
i carry a card in my wallet with a number they are to call before they try to treat with a clot buster

now back to lecanemab again
it lowers cognitive decline by 27%
it also seems to lower tau tangles
it seems to have fewer microbleeds 

the rollout of the drug has been handled like it should be
aducanumab was not handled right and all the research had not been done
lecanemab probably will be the go to treatment for early disease until something better comes along

today its expected that lecanemab will get fda approval to be use probably in mci due to alzheimers and early alzheimers

its expected to be on the market later this year

now the cms or medicare will decide whether they will pay for it

if they dont approve payment expect an outrage much greater than when they refused aduhelms payment

the wrath of all of us in the alzheimers world will descend down upon cms medicare and all of congress
there will probably be purple marches on washington dc

i might even join them

its time to approve this treatment
its a treatment not a cure
dont deny us in the alzheimers world 

the organicgreen doctor

No comments:

Post a Comment