my story revisited #92-did those drugs work

MY STORY REVISITED #93-DID THOSE DRUGS WORK

in 2013 i was about to do a presentation at an alzheimers symposium
one of the topics i covered were three alzheimers studies that were looking promising

one was the colombian study using a drug similar to the one i am on in patients who were destined to get early onset alzheimers
the results are looking like the drug didnt or isnt working in these patients

these patient have a gene for alzheimers that gives it to them 100% of the time
its different than late onset alzheimers patients many of who have the apoe 4 gene but not all of them
have that gene

the a4 study results are not completely in yet
this drug may not work as well as my drug aduhelm (aducanumab)
these folks who are given a drug similar to my drug called solanezumab that also removes the amyloid plaques
these folks are all prealzheimers which means they have  no memory issues but have positive amyloid scans for amyloid
they will most likely develop alzheimers disease
many have been on this drug for several years since i blogged the blog below 8 years ago

the biogen ban2401 or lanecemab study a cousin to the aducanumab i am on will be also done in prealzheimers patients to see if you can slow the disease down before it starts
if the a4 results are positive thats significant
that would mean you could be pretreated before symptoms develop
we will finally know if the a4 study was successful

the bexarotene study didnt show that it helped to slow down the disease

so in these studies 2 didnt work but maybe the a4 solanezumab study willl show it works
fingers crossed

i got my first infusion last week of aduhelm (aducanumab) in the restart of the biogen study 
so far no side effects
i had a tau protein pet scan yesterday at ucla as part of the start of the biogen study
 
in the study i was in before the pandemic there was a slight decrease in tau tangles noted

in alzheimers amyloid comes first then tau protein tangles shows up
the tau tangles show up where the alzheimers is progressing
the tau scan can be used to predict how fast the alzheimers will spread in a patient

as i laid in the pet scanner yesterday i thought about the tau protein tangles that were showing up on my scan as i was thinking about them
if i knew the results then i would know a prediction of how fast my disease would progress over the next few years or months
wish i knew that information
its like knowing how much cognitive time you have left
makes me want to reactivate my bucket list

also there is in the blog below the alzheimers graph
it follows from birth to death the changes that occur in alzheimers disease
this graph is the usual course for a late onset alzheimers patient

i am following this graph in my course so far
eg
i am 71 years old
in this graph it shows at this age i should be in the middle of mci
i have been diagnosed for over 10 years
i seem to be at the early part of the mci journey 
i know though it could take off at anytime

im hoping that the aduhelm (aducanumab) i am on will slow things down for me and for others who take it
also the other things that we all can be doing now no matter our age and are listed below 
long term preventative things seem to make a difference also in slowing this down
remember doing it over a lifetime will most likely make a difference

i am wondering what the next 10 years will bring in the alzheimers world
and
to my world
_________
04-26-2013

ALZHEIMERS SYMPOSIUM PART 4
please note the date was inadvertantly posted incorrectly last week
i will present a talk on my story with possible alzheimers
at the alzheimers symposium at the mayborn center in temple texas
on tuesday april 30, 2013

here is the the link to register for the event

part 4
the alzheimers graph

now that ive gone over the tests that are done in the adni study
and gone over my history lets look at the alzheimers graph

this graph was produced by dr schaefer a well known 
alzheimers researcher speaker and writer who does an 
excellent job of doing all of them 

it shows when beta amyloid accumulation starts and progresses
when tau protein destruction starts
when the brain structure changes starts-mri scan
when memory loss starts
when the loss of clinical function starts

this is a graph of a typical alzheimers patient although
those of us who have family members with the disease or who have
treated patients with the disease know that there is no such thing as 
a typical alzheimers patient

this typical patients graph after looking back now i realize that my 
mother followed this path and knowing what i know now
i appear to be following this same path

my younger brother however was diagnosed earlier and his stuff
all started 20-25 years before my mothers and mine and this 
typical alzheimers patients graph

look at the bottom scale that goes from birth to 100
then look at the symptomatic area that red streak that seems
to start as faint in the early 50s then darkens as time progresses

now follow up the graph from the early 50s to the amyloid line
you can see that in the early 50s there is already a significant
amount of beta amyloid present

now go to the early 40s and go straight up to the amyloid line
you can see that appears to be when the beta amyloid level is
normal then starts to be abnormal
the disease process has already started

now go back to the 50s line
my mother was in the prime of her career as a  nurse
she was offered  a chance to go to college to get her 
bachelors degree in nursing

i was in my early 50s in the prime of my career working at 
kings daughters clinic in temple and belton then transferred to 
austin regional clinic in austin and cedar park

at that age the beta amyloid would be significantly elevated
on both of us
there would be the beginning of the tau protein destruction 

then move to the 65 y/o line  and go up 
this is when most people retire and draw social security and 
medicare
my mother retired at this age 
i worked with her at the hospital as i was fulfilling a 3 year 
federal obligation to that area
she did not have a memory problem 
but
if you follow up to the amyloid line you can see that even 
more amyloid accumulation had occurred as well as a significant 
amount of tau protein destruction 

she may have had some memory issues noticeable to herself
but not to others

then move forward on the graph 10 years
things would have gotten worse
there is a lot of beta amyloid accumulation plaques tau destruction
inflammation tangles and oxidation 
the disease had progressed significantly
her scans showed atrophy
her memory was getting worse and her clinical function had worsened
the disease was marching on 
then worsened even more over the next several years

now go back and look at 58 y/o when i applied for my long term care
insurance and passed the evaluation without problems
the amount of beta amyloid and tau destruction was significantly 
increased
but there were not memory issues

then at 60+ i notice memory issues my mri scan is normal but 
my beta amyloid and tau levels are abnormal

by brother was diagnosed in his early 50s 
since his disease occurred 20+ years earlier than this graph that
my mother followed and that i seem to be following

look at the 30 y/o line which is like our 50 y/o line
he was halfway through his career as a fireman
but he would have already been accumulating beta amyloid and having
tau destruction going on 

then at 40 y/o when he retired as a fireman and started the 
fire academy as their top cadet
he would have accumulated even more beta amyloid and tau
destruction
there were no memory issues yet

then at 50+ y/o when he was diagnosed the levels were even higher
the mri would be abnormal 
there was memory issues noticeable to himself and others
since then things have deteriorated 

so what if we could do something to modify this accumulation of 
this beta amyloid and then the tau production at the early years
30s for him and 40s for me

what if something could be done to grab that beta amyloid and 
remove it or prevent it from accumulating
what if something could be done to keep it from being produced

that time may be now
there are three studies starting up this spring

the first is the colombian family study where there is a family 
of 5000 people in an isolated area of colombia that have a 
lot of members who have the gene for alzheimers
if they have the gene they get the disease in the early 40s

now they are taking some of the members who carry the gene
who do not have any symptoms yet
who are in their 30s and will be doing the same tests that 
we are having done in the adni study
neuropsych test blood profile mri scan spinal taps for beta
amyloid and tau pet scan for glucose metabolism and pet scan 
for beta amyloid 
these will be done every year for 5 years
then 
they will be given an alzheimers vaccine where antibodies will 
bind to the beta amyloid and remove it from the brain and prevent
it from accumulating
if this beta amyloid theory is correct and this vaccine works
then these family members who are destined to get alzheimers
wont get it or will have a milder form of the disease

this vaccine was given previously to patients who were more advanced
in their disease and it didnt work
the thinking was it was given too late in the disease when so much 
brain cell destruction had occurred
its like taking some one who has had a massive heart attack and saying
lets control their blood pressure cholesterol diabetes weight and exercise
but it doesnt help because so much damage was done 
it should have been started 20-30 years earlier

so it may be with this vaccine

then there is the a4 study
a 1000 people who are 70+ y/o who have a positive beta amyloid scan 
or amyvid pet scan but who have no symptoms
they will be given an alzheimers vaccine and followed for 3 years

we may have our answer soon if the vaccines work
if removing this beta amyloid works

then there is the bexarotine study
bexarotine is an anticancer drug thats given to patients who have a 
certain type of skin cancer
its fda approved for this and is now commercially available
its due to go generic in 2 years

bexarotene was given to rats who are genetically programmed to get
alzheimers disease
it shuts down the production of beta amyloid 
the rats did not get alzheimers

now they are starting a study in humans who have beta amyloid 
accumulation to see if it will stop the production and accumulation 
in the brain 

so now we may have if they work two ways to slow the disease
down early on in the process
the vaccine removes the beta amyloid and the bexarotene slows 
the production of the beta amyloid

now go back to the alzheimers graph and see the blue modifying line
and the green preventative line

what if there was something we you and i could do now to help
to maybe slow down or even prevent this disease

well it appears there may be

its the same things that ive been telling patients for years
and what your doctors have been probably telling you

control you weight blood pressure cholesterol and diabetes
remember those white matter hyperintensities (wmh) that show up 
on mri scans
they are associated with patients who have these four things
and patients with several of these wmhs in their brain 
have an increased chance of developing dementia or 
alzheimers disease and having strokes

in a recent study in patients who have the apoe4 gene like i 
have they found that there was an increase in beta amyloid 
production 
in patients with apoe4 and uncontrolled blood pressure the 
rate of beta amyloid production was even greater
if the blood pressure was controlled the rate when down 

diabetics have a 5 times increased risk of developing alzheimers
disease

control depression and anxiety

exercise
you dont have to join a gym 
walk 30 minutes 5 days a week

eat a mediterranean diet
its not complicated
olive oil vegetables fruits nuts lean meats fish milk products
its all about moderation

get adequate sleep
if you have sleep apnea get it treated

limit alcohol use

no smoking

avoid a stressful life

be happy

listen to music

so these are things you can do now to slow down or maybe
prevent this disease

as more and more people are diagnosed with this disease as more
people get these tests mentioned above we as a society and a 
medical community will need to decide what to do with them
economically socially psychologically and medically 

hopefully a cure or treatment will become available if not for 
my generation maybe for future generations
__________
in the future the way to prevent and treat alzheimers disease early will be

do the healthy things above
take a medication that will prevent the amyloid from forming and if it does that drug or another will remove it if it forms

take a drug that removes the tau protein tangles and prevents them from forming

take a drug that attacks the inflammation that occurs in the brain with alzheimers disease

this 3-5 prong attack may prevent you from developing alzheimers disease

now 8 years later we are getting closer to a treatment and hopefully a cure for alzheimers

the organicgreen doctor