aducanumab study to be reactivated-im in

 ADUCANUMAB STUDY TO BE REACTIVATED-IM IN

i am in the quest to be the first survivor of alzheimers disease
thats my goal
i may not reach it but im trying to do what i can to slow it down

if you have ever been to an alzheimers association walk to end alzheimers you may have seen those different color flowers in their promise garden like in the background of that picture
the colors represent those with family members with the disease those with the disease those who are advocates for alzheimers
then

there is that white one that is not ever in the promise garden
its reserved for that first survivor
its usually shown at the opening ceremonies of the walks
i usually have to hold up and talk about the one that is for those with the diagnosis
they wont let me even hold that white one

that white one is my goal to be able to stand up there and hold it high

in my quest for the white alzheimers flower i have done a lot over the last 10 years to slow it down
the last thing i added was to be in the biogens aducanumab study

as a review
aducanumab is an antibody derived from old folks who dont get alzheimers
its then made in the lab and given intravenous to research subjects
it may slow down things some

about 10 days ago the fda advisory panel recommended it not be approved for use in alzheimers disease

the thinking is the full fda panel will not approve its use but will require a longer phase 4 study to determine if it really helps
or
probably less likely it will approve its use in alzheimers disease

this decision is coming in march 2021

in 2016 i entered the aducanumab study receiving as i found out later 18 months of placebo

then later i got 7 months of the real aducanumab

they gave me a low dose i think of 3mg then later a 6 mg dose then eventually the full dose of 10 mg that may be the one that slows down the disease

my last dose was in 2019 when the study was stopped
then later a decision was made to reactivated the study since analysis of the data from the study showed it may help then the covid 19 caused it to be put on hold

yesterday i had my annual neurology visit at ucla to see the neurologist that manages my care
she asked me a lot of questions about how i have been doing cognitively and health wise
then she did a full neurological exam
then i did the moca memory test
one thats commonly used in neurological offices to follow ones memory 
normal is a score of 27-30
i scored a 29
i think some of my original moca scores when i was first diagnosed was around 25 which is abnormal
over time it has gradually returned to normal 
why
healthy living
aricept (donepezil)
maybe the few doses of aducanumab i received but my scores were already better before i started the aducanumab infusions

for some reason my memory has improved
as i told her i have to type in 10 different passwords each morning to log onto emails facebook twitter financial institutions etc
none of the passwords are the same and they are all random
i fugure as long as i can do that each day correctly im doing ok

then she said
finally i want to tell you that we are probably going to reactivate the biogen aducanumab next month or the next
everyone who was in the study has agreed to return to be in the study 
are you in she asked
you betcha i said

it has to go through an institutional review to say its ok
if its oked then im in 

i have to have new baseline labs and memory tests and neurological exams and maybe an mri of the brain and maybe a new amyvid pet scan for amyloid
if i pass it all then i would restart my monthly infusions for a total of 18 months

they would start me on the low dose of aducanumab to make sure there are no side effects then they move to the next dose then they finally move to the 10 mg dose that seemed to possibly slow down the disease

previously in studies they saw the amyloid was removed from the brain 
activities of daily living decline slowed
memory test decline slowed
tau protein decreased
inflammation decreased

the biggest side effect is a thing called aria which stands for amyloid related imagining abnormalities which are micro bleeds as the amyloid is removed from the brain
its more likely to occur in patients like me who have the apoe 4 gene for late onset alzheimers
if you have the homozygous or double version like i have its more likely to occur

so far in the hundreds who have taken aducanumab no one has had to be removed from the study because of these arias

so in summary 

im in 
for at least 18 months
hopefully by the end of the study a decision will be made on how effective it will be

so for now i am back on my quest to be the first survivor

the organicgreen doctor