alzheimers news-todays the day

 ALZHEIMERS NEWS-TODAYS THE DAY

well todays the day when the fda advisory committee meets to hear input on whether they should recommend that the fda approve my drug biogens aducanumab for use in alzheimers disease

why this is important is if the fda advisory committee recommends a drug be accepted for use then its usually eventually approved by the fda full panel
if approved it may be available by march 2021
here is a link to that meeting that starts at 1000am est and goes to about 400pm est

aricept (donepezil) was approved for use in 1996 for use in treating alzheimers disease
it does not really treat alzheimers disease by stopping the disease or slowing down the disease
it only slows down symptoms for usually a short period of time
i have been on it for ten years
i think its one reason my symptoms have not progressed
i have had periods where i had to go off it like when i was sick with possible covid 19 in march
i personally could tell a difference when i was off the medicine

it works by increasing acetylcholine in the brain cell nerve ending which make them work better
thus
memory issues may improve or memory loss is delayed for a period of time

the data that shows how well this works when i look at i wonder if it would get approved today
they are side effects that are worst at the beginning but over time the body gets use to them
my major side effects ive seen are sleep issues vivid dreams leg cramps muscle fasciculations and occasional nausea
ive learned to live with them though since i feel like the drug is helping

in the biogen aducanumab study i was in i got 18 months of placebo ie saline infusions then i got 10 mg of aducanumab intravenously each month for 7 months
i had no side effects that i noticed during those 7 months 
there arent really any major side effects to this aducanumab drug
some folks have had minimal bleeds called aria that did not stop them from taking the drugs
it was more common in folks like me that have the apoe 4 gene
so compared to aricept the aducanumab has very little side effects

so how well does it work
when you have been on it for a year when they scan your brain your amyvid pet scan will be read usually as negative or normal
remember to get into this study your amyvid pet scan had to be abnormal ie it had a lot of measurable amyloid in the brain which a year later with treatment will be removed

removing this using the higher dose that i was on seems to improve or slow down the decline
one  the amyloid is removed
two  the tau protein tangles are reduced note these appear after amyloid appears in the brain
three  memory tests show a decrease in decline
four  activities of daily living show a decrease in decline also
some folks improved or stayed the same

for someone who had has a loved one with the disease you can accept a decrease in the rate of decline in your loved ones

also
remember this is like a terminal cancer that will not be cured
alzheimers disease will cause the person who has it to die from the disease eventually 
so
i look at this like i have terminal cancer that we can do a few things to slow it down enough so a person can live a little longer and enjoy being with family and friends and can enjoy life a little longer
maybe 
aducanumab is this treatment that might do this for alzheimers

i identified aducanumab years ago when it was early in research as the drug that in my window of time i had to do something that it would be the one that might help slow this down

i also knew that if i went for this one that if it failed that i might not be able to qualify for another such treatment trial
i realized though that it was the only one out there right now that might help
so
i went for it
and
i hope i guessed right

this drug will cost around $50,000 a year for treatment 
a cost thats equal to or less than some treatment for connective tissue disease like rheumatoid arthritis or lupus or ulcerative colitis or psoriatic arthritis or cancer

i plan to take it if it becomes available

luckily i am in the aducanumab treatment study that may be extended
i hope to find out in a couple of weeks if that will happen

so
today i will be listening in off and of to the fda advisory committee meeting online
linked here

i feel like someone with a terminal cancer who just got a chance to take a drug that will prolong their life for a few months or few years

for those in the azhiemers world who has had family with this disease i am sure you would love to have your loved ones back for a few more years

thats why im going for it 

here below is the information on my team organicgreendoctor that will walk in this years santa barbara walk to end alzheimers on saturday november 7 2020

the opening ceremony will be virtual
so anyone can watch it online

then

each individual member will walk in their neighborhood or favorite hiking trail wearing their purple alzheimers shirts for the 2-3 mile walk 
this is the safest way to do the walk this year
please wear your mask and keep a good social distance from others
hopefully next year we can all be live

here is the link to our team
the organicgreendoctor team

donate and or join us that day
you can walk wherever you live

the organicgreen doctor