organicgreendoctor: alzheimers news-today is scan day

organicgreendoctor: alzheimers news-today is scan day:   ALZHEIMERS NEWS-TODAY IS SCAN DAY this is an amyloid pet scan the top one is a normal elderly control without alzheimers there is no red s...

alzheimers news-today is scan day

 ALZHEIMERS NEWS-TODAY IS SCAN DAY

this is an amyloid pet scan
the top one is a normal elderly control without alzheimers
there is no red stuff there that shows up in the brain
the red stuff is amyloid plaques

the bottom one is someone with alzheimers
see all that red stuff in the brain
thats amyloid plaques 

it gets highlighted when a radioactive tracer is injected in the vein
then after about 30 minutes+ an amyvid or amyloid pet scan is done

if there is amyloid plaque in the brain it is highlighted by the red stuff on the scan

the first picture is negative
the second picture is positive
if you have alzheimers disease your amyvid or amyloid pet scan will be positive

in the theory of alzheimers amyloid plaques accumulate in the brain killing brain cells
then
tau protein in the brain cells unwind and form tau tangles
these tangles kill brain cells
then
inflammation sets it and kills more brain cells

we now have meds leqembi and kisunia that removes the amyloid plaques
these amyloid antibodies are now available in the private world

meds to treat the tau tangles are being studied in clinical trials
meds to treat inflammation are in clinical trials

before i started the biogen aducanumab or aduhelm study my amyloid pet scan looked like that second picture
it was positive
i was accepted in the clinical trial where i got 34 monthly infusions to remove the amyloid plaque

studies show treating with this med and similar meds ie leqembi or kisunia will result in about a 30% reduction in memory loss

not great but i will take it 

then after finishing my clinical trial about 6 months later i had an amyvid or amyloid pet scan that was read as negative for amyloid plaque

it probably looked like the first scan above
no red stuff seen

now i have never seen my scans
all 5 of them have been in clinical trials so they dont let you know the results or see the scans

i was verbally given my first and last scan reports but was never allowed to view them

it has been two years since my last treatment and my last amyvid or amyloid pet scan
so has this stuff reaccumulated in two years
is my scan still negative
do i need retreatment
do i need to be on a maintenance monthly infusions

aduhelm or aducanumab is off the market now
however
lequembi and kisunia is available now 
leqembi is a cousin to aduhelm 
it worked better and had slightly better results
kisunia is about the same but it may have more side effects
like
brain bleeds or aria
so did aduhelm and so does leqembi
i did not have any aria or brain bleeds when i took aduhelm

i am homozygous apoe4 apoe4 which puts me at a higher risk of bleeds

apoe 4 is the late onset alzheimers gene
about 25% of us have apoe4
about 1% of us have apoe4 apoe4

apoe4 regulates lipid metabolism

you can counter the effects of having apoe4 by healthy living and good cholesterol control

i recently was reevaluated at cedars sinai neurology to see what my status was and to consider retreatment or maintenance treatment

these meds do not work unless you are early in the disease like mild cognitive impairment like me or early alzheimers
if you are advanced too far with the disease they dont work

there are large studies being done now giving these to people who have no symptoms but have positive amyvid or amyloid pet scans
they will be treated long term to see if the meds slows down or stops the disease

amyloid  plaques start accumulating 20 years before symptoms starts

the neurologist who headed the study i was in when i transferred to ucla is the neurologist i am now seeing at cedars sinai
she was also the neurologist i saw at ucla for my private neurology care

i had transferred to a local neurologist who does not give these meds to patients who are apoe4 apoe4 positive because of the risk of brain bleeds
she recommended i go to a tertiary care center

so thats why i am at cedars sinai for my care

she my neurologist was excited to see me
she said there is not many of you out there who are this early in the disease and has been treated
she said i was a clinical trial of one

so the plan is
i just had an mri this week to make sure nothing has changed structurally in my brain since my last mri 2 years ago

then today i will have an amyvid or amyloid pet scan done


thats my arm after the radioactive stuff is injected in my arm
the 3 purple bracelets represent
my mother who died from alzheimers 
my younger brother who died from alzheimers
me who is still fighting the disease
i wear them 24/7

if my amyloid pet scan  looks like that first scan above ie negative then i will just wait unless research says i need to be on a maintenance dose of leqembi
if its positive like the second scan then i will probably get treated with leqembi since aduhelm is no longer available

i also am very excited to have this amyvid or amyloid pet scan today since i will be able to finally see the scan 

none of the 5 or so i have had done have i got to see the scans

so
i am excited today and will be anxious to see if that amyloid  has reappeared

if you are early in the disease like i am then you are a good candidate for this treatment
you just have to understand
its not a cure
it only slows things down 30%
there are risk for brain bleeds or aria especially if you are apoe4 positive

i understand the risks
i understand the chances of it helping

i accept these

the amyvid pet scans mris and the medications are covered by medicare and some insurances as well as the office visits

medicare disadvantage plans might have some prior approvals or as i call them prior disapprovals

leqembi and kisunia are now available outside of research and is in the private world

the neurologist told me that my memory had improved to a normal level so that if someone didnt know my story and history they probably would not do further testing or treatments

now i do notice some things that could be attributed to my age 
i am 76

word recall and name recall has seemed to changed some
all can happen with aging
i seem to be acutely aware of it when it happens since i am always waiting for this disease to just take off again

i realize that all i am doing only is delaying things and doesnt cure it

i can accept that
30% is better than 0%

If you think you are a candidate for these drug  see your primary care provider or consider seeing a neurologist

if you are really interested you might consider a facility that has a memory care clinic like most tertiary care centers like here in california  usc, uci ucsd ucsf cedars sinai stanford or most large university systems with medical schools

in texas ut southwestern in dallas ut san antonio ut houston baylor scott and white ut galveston and ut austin

in arkansas the university of arkansas medical center

your state will have a memory center and probably gives the drugs to those who qualify 

there are a lot of people who are getting them that are too late in the disease
these folks will not benefit from taking them
they need to be given early in the disease

it is important whether or not you seek treatment with these to have your memory issues evaluated
not all causes are alzheimers and many are treatable

wish me luck
stay tuned

the organicgreen doctor