welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, July 28, 2023

these new medications are just the beginning


that is me getting an infusion of aduhelm at ucla as part of the embark clinical trial at ucla
aduhelm is approved by the fda for use in mci or early alzheimers
medicare will only pay for it if its given in a clinical trial
once it gets full approval by the fda medicare will probably give its full approval to pay for it
my study and other studies will be finished soon and will be reported out
if it shows that it improves or slows down cognitive decline it will probably get full approval

the problem was that biogen didnt finish the studies that needed to be done before they sought approval

more than likely in the future aduhelm will be the third choice behind leqembi and donanemab

all 3 grab amyloid or amyloid plaques and remove them
all 3 will show that they slow down cognitive decline

leqembi just got full approval
its given every two weeks in an infusion like im getting above
it is being studied to be given as a shot like insulin is given so folks can give it at home
much like humira is given at home for rheumatoid arthritis

that will make leqembi attractive for use since it eliminates the hassle of going to an infusion center
the infrastructure for giving these drugs is a major obstacle to receiving it 

at home shots eliminate this major problem 

donanemab will probably get full approval later this year
medicare will probably give its full approval to pay for it also
donanemab seems to work better than the other two
when given to real early folks like me who have mci or mild alzheimers 
the cognitive decline was slowed by about 67%+-

it is given as a monthly infusion

donanemab seems to have more side effects than the other two
it also doesnt have to be given as long as the others have to be given

the side effects are aria or amyloid related imaging abnormalities 
aria e means with edema
aria h means with hemorrhage
bot of these can be seen on mri
all my mris show no aria after 32 infusions of aduhelm

if you have the apoe 4 gene you are at increased risk for these aria
if you have two copies of the apoe 4 genes or homozygous apoe 4 your risk is even higher
i am homozygous apoe 4 but had no aria

2 folks died in the donanemab study from aria 
both were put on blood thinners for other reasons
several other folks on the study were placed on blood thinners and had no issue

dr daniel gibbs from a tattoo on my brain was in the aduhelm study and had a major bleed
he was not allowed back in the study
he can not receive any of these drugs again

most folks in these studies who developed aria e or aria h on mris had no symptoms
the aria e and aria h resolved

so what to expect if you want to get on these drugs
there are strict criteria
you must have mci or mild cognitive impairment or early alzheimers symptoms
not early onset alzheimers as thats a different genetic version that hits younger folks

you have to see a doctor who has done a good through workup to include a history and physical and labs and good through memory tests
you have to have an apoe 4 genetic test since if you have this you are at a higher risk for the aria h bleeds
you if you are positive have to have counseling regards the risk
i was positive
i was counseled
i without hesitation said go for it i want this drug
i accepted the risk knowing there was not another choice for treatment

i saw a neurologists this week who said you know you are an interesting case
you should not be doing this well 

you have an mri
if its looking like alzheimers you either have to have a spinal tap for amyloid and tau or you have to have a amyloid pet scan for amyloid 
medicare will probably approve paying for these tests
if they are a positive you are a good candidate to receive this drug

it does not work in folks who have moderate alzheimers or severe alzheimers or the genetic early onset alzheimers or in early alzheimers if you have a high tau tangle level on a tau pet scan

if you do get approved you have to have the infusions at a infusion center 
the first one you have to stay there for 2-3 hours to make sure you have no reaction
the infusion itself takes about an hour

leqembi is setting up infusion centers across the usa so more folks can get them

some think a tau pet scan also needs to be done since if the tau levels are real high in the brain then these drugs wont work as well
right now these arent required

research is trying to decide how long to treat with these drugs then how often to do maintenance dosing

remember these drugs remove almost if not all amyloid plaques from the brain
the amyloid though is continuously being deposited into plaques so the meds have to be given regularly to keep the amyloid plaques from being reformed

so it probably means a lifetime of getting these infusions

for me 
i will finish my embark study in one year
i will then decide which way to go 
im leaning towards leqembi by injections at home when they become available
other results from all these studies though may alter that decision
a new pill that removes amyloid and keeps the plaques from forming is being studied now
its expected to get  approval in about 2 years
that sounds good to me
right after that will be a medication to remove the tau tangles from the brain

eventually probably ill take a pill to prevent the amyloid from forming new plaques
then take infusions to remove the tau
when a new drug to treat the inflammation in the brain becomes available ill take that one

these new drugs the antiamyloid antibody drugs like aduhelm or leqembi or donanemab have opened the door to even newer drugs to treat this disease

next also
they will probably start treating folks who have the amyloid plaques in the brain with no symptoms
this will be diagnosed initially via a blood test in your primary care office
you can then start one of these new drugs plus do all the healthy things one should be doing

the goal
you wont ever develop alzheimers disease

for me
i am so early in my disease earlier than most so i have benefited most form these treatments
i like being an interesting case

these are exciting times in the alzheimers world

the organicgreen doctor

No comments:

Post a Comment