my story revisited #116-bace was no ace

MY STORY REVISITED #116-BACE WAS NO ACE

in 2013 there was a buzz in the alzheimers world about the bace inhibitors
it appeared that they might help slow down or prevent alzheimers disease
in 2013 when i wrote the blog below i was looking closely at the bace inhibitor clinical trials since i was about to finish the adni2 study i was in 
i was only looking for clinical trials that showed promise to work
since i knew i would probably only get one chance at a treatment trial
i knew i needed to chose the righf tone

basically the bace inhibitor works as described below by inhibiting the formation of amyloid
the theory was that it might prevent alzheimers

what they found was that it didnt work or that it made things worse

man
im glad i didnt qualify for these studies 
i would unlikely have been able to qualify for the biogen aducanumab study i am in now

a reminder that you have to be proactive for yourself when looking at these clinical trials
that holds true for other disease clinical trials also

__________
12-13-2013
BACE

bace is the abbreviation for beta site app cleaving enzyme
the bace enzyme breaks off the protein that may be the culprit
in alzheimers disease
the beta amyloid protein
people who have a defect or mutation in the gene that makes
bace
have a lower instance of alzheimers disease

in comes the drug companies
they have made eg merk a compound called mk-8931
that inhibits this bace enzyme

its an oral drug that has already gone through phase 1 studies
and is now entering phase 2 and phase 3 studies in patients
with mild to moderate alzheimers disease
the drug will lower the levels of beta amyloid in the brain and hopefully
by doing this will slow down or prevent alzheimers disease
thats the theory

now the mk-8931 will be used in prodromal or prealzheimers or
amnestic mild cognitive impairment in patients who may have
a positive beta amyloid pet scan and abnormal levels of beta
amyloid in the spinal fluids
two positive tests that are seen in alzheimers disease

hum that sounds familiar
oh wait thats me
i have all those things except i dont have my beta amyloid pet scan
yet but i will soon
the thinking is to attack this early on in the  process before
things get worse

if i qualify for this study then i would take this mk-8931 for a
period of time and they would follow cognitive tests and spinal
fluid levels of beta amyloid and pet scans of the brain for
beta amyloid
or
i would be in the placebo group
that would suck wouldnt it to be in the placebo group


there is progress being made it seems
there is this light in the end of the tunnel that is faint
but its starting to get a little brighter
_________
i wrote above that it would suck to be in the placebo group of the bace study
well little did i know but i would be put in the placebo group later in the biogen aducanumab study and receive 18 months of placebo
when the study was paused when the pandemic started they told us whether we got the real drug or not
i must say i was surprised i got the placebo since i had a 67% chance of getting the real drug

yes it sucked to have gotten the placebo 

luckily i did get 7 doses of the real drug after everyone in the study was put on the real drug




this last wednesday i received the 7th infusion in the reactivated aduhelm or aducanumab study
it was the maximum treatment dose of 10 mg/kg 

now i will receive this maximum dose every infusion i get each month
as long as i dont develop aria or microbleeds in the brain
i had an mri a couple of weeks ago that was normal

an side my mri has not changed since my original mri in 2010 which is good for me

i have another mri scheduled next month after my next infusion
if it remains ok then i will be able to continue my infusions

then
next week i will have a day long battery of memory testing and labs etc at my 6 months visit

then
its just waiting to see if this really helps
it removes the measurable amyloid plaques and some of the tau tangles
but
will it make a difference in the long run

it may take months or years to know for sure

in the meantime i will keep on keeping on

the light at the end of the tunnel has gotten a little brighter

the organicgreen doctor