alzheimers news-here is to a new start today

ALZHEIMERS NEWS-HERE IS TO A NEW START TODAY

in this blog i wrote on wednesday about in 2017 the day before and the day after i got my first infusion of biogens aducanumab drug that removes amyloid from the brain
i got 18 months of placebo and 7 months of the real drug aducanumab now called aduhelm
the study was stopped aburptly in 2019
its restart was delayed over a year because of the covid 19 pandemic

the plan is for me to get about 24 monthly infusions of aduhelm (aducanumab)
it will over that time remove all of the measurable on a amyvid amyloid pet scan amyloid that is in the brain 
leaving me with a negative amyvid pet scan in 2 years

the big question is
does it make a difference
will the amyloid all come back if the infusions stop
the answers will be made at the end of this 2 year study and the one that the fda is requiring biogen to do 
that required study could be 5-9 years long
so
we will know for sure how well it works when this is all done

there is controversy on whether this drug should have been approved

as i said in my new york times interview i think it should have been approved
and
so does this researcher dr stephen salloway who treated the first patient with aduhelm (aducanumab) and has treated over 65 patients with this drug for over 5 years
he has the most experience of anyone using this drug
he thinks it should have been approved and notices that it has made a difference in his patients who were treated
he has also noticed a decline since his patients were stopped for awhile during the studies pause

here is the link to an article where he is interviewed about using aduhelm (aducanumab) in these early alzheimers patients

so with all this in mind
we are off to ucla in a couple of hours 

we will zoom along the 101 down to the congested 405 to get there
on this mission today the traffic will not phase us at all

here is our schedule
see the neurologist for recheck on my status to make sure im good to go today
have the first visit memory testing done
have an ekg
have my vital signs taken
have blood drawn for blood count ie cbc blood chemistries urinalysis aducanumab serum level ie whats my aducanumab level to start with and an anti aducanumab antibody level
then
if all is clear
ill stick out my arm and get my iv 
then 
they will hang up a bag of aduhelm (aducanumab) at a low concentration i think this one will be 1 mg
over the next few months that will be gradually increased to 10 mg
why
there is a chance of some microbleeds called aria to happen 
its more likely to happen in folks like me who are apoe 4 apoe 4 positive
this aria usually resolve

i have had 7 of these infusions in the past and didnt have any aria on mri
and i have had plenty of mris
i will have several this year

the infusions in the past usually took 1 hour then you have to wait 30 minutes post infusion to leave

today from start to finish is about 5 hours +-
future infusion visits will take about 3 hours 

the trip down will take 2 1/2 to 3 hours
the trip back on a friday will take 3+ hours

folks its all well worth it

will i notice anything after the infusion 
nope no instant change 

the improvement in cognitive decline seen with this drug aduhelm (aducanumab) is a gradual slow one
ask me if i notice anything in 2 years

another reason i am glad to be able to get on this drug so early is that of all the 3000+- folks who have been put on this drug worldwide in these research studies i am probably the one who is the earliest in the disease process and may be one of those who could get the most benefit

so
if anyone is going to benefit from taking these aduhelm (aducanumab) infusions
it will be me

come on 
lets get going on his new journey
follow me along this journey 

im pumped
im ready

the organicgreen doctor