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

Wednesday, April 26, 2023

alzheimers news-it still works after its stopped


i take monthly infusions of the anti amyloid drug aduhelm or aducanumab at ucla
when i finish the extension of the clinical trial i am on called the embark study i will have gotten over 40 monthly infusions of aduhelm or aducanumab plus 18 placebo infusions

the 40+ infusions of aduhelm should be enough to remove the measurable amyloid plaques from my brain

the studies mentioned in this article in regards to aduhelm is for less infusions than i have gotten
my drug in comparison to some of these anti anmyloid drugs doesnt remove the amyloid as fast as the others mainly because of the way theirs are dosed
eg leqembi is given twice a month

when they measure amyloid in the brain there is a cut off number of 25 centiloids
this is the number that means most is removed from the brain
i expect my amyloid pet scan i get next month will show most of my amyloid is gone

since its part of the study i will never get to see the results

yesterday i requested that i be able to see my amyloid pet scan and tau protein pet scans when i finish the study next year
knowing those results would tell me where i am with my disease
i would know if my amyloid plaques are mostly gone
i would know via the tau pet scans where in the brain my alzheimers disease is taking hold
if its heavy in the frontal lobes my journey will be a disturbing one for myself and my family

like i told the research neurologist i want to know where i am at with my disease when this study is over so i can start planning my next 10 years of my life
i have considered paying out of pocket for these scans at the end of the study if i cant access the study scans

i will not qualify most likely for any new treatment clinical trials in the future
my day of alzheimers clinical trials afer 13 years will be over
unless for some reason biogen extends the trial i am in now which is unlikely
they are marketing leqembi with eisai
it works better than aduhelm does
the other ones coming on the market in the next few years will work better than aduhelm

what they found in lay terms is that folks who are getting these anti amyloid drugs like aduhelm or leqembi or the soon to be approved donanemab when they do their amyloid pet scans after the treatment study is completed shows that the amyloid plaques are below that acceptable level of 25 centiloids

those in the study i was in initially that ran for 18 months showed most was gone but the level was still above that 25 centiloid level
leqembi and donanemab treated folks were below that level

there are people in my study that have gotten it for 5 years +
their scan reports will eventually be reported out as will mine next year

i fully expect mine to show the amyloid is below the 25 centiloid threshold level
of course i wont get my results ever

what they have found and its mentioned in this article is that when the drug is stopped and the folks are followed that the patients are maintaining their memory ie its not getting worse maybe not improving but not declining as much as those who didnt get the drug

in my study which was initially stopped prepandemic those who got placebo deteriorated
those who got the drug like me did not deteriorate as much
also biomarkers they measure also have not gotten worse either

eg the amyloid isnt accumulating
the same may be true of the tau protein tangles
the biomarkers such as nfl or ptau also are stable

in alzheimers amyloid plaques accumulate first then tau tangles form then inflammation follows

how much tau tangles are present when the drugs are started determines how well these drugs work
the more tangles the less effective they are
women tend to have more tau tangles at the start of the study
women tend to have more alzheimers then men do

there seems to be some effect on the tau tangle levels in the brain and the inflammation seen
basically it seems to maybe slow down that cascade of events that happens in alzheimers

so what does this mean
it means the drugs are working and may still have their effects months after the drugs are stopped

the plan i think in the future is to give intermittent doses to keep the amyloid levels below that threshold mentioned above

its expected these drug makers will soon apply for fda approval for intermittent dosing as a maintenance dose after initial treatment is done 
this to keep down the amyloid plaque levels

there is a new anti amylod drug that should have its study reported out in 2024
it appears to work even better than any of these mentioned above
it is not given as often

ill keep my eye on that one for when i get off the aduhelm study in a little over a year

i had a long discussion with the research neurologist yesterday about a plan for managing my alzheimers care after i get off the aduhelm

i get my last aduhelm infusion in june 2024
i do a final follow up visit in late fall 2024 which will include neurological evaluation multiple memory testing
i will have a final mri a final amyloid pet scan and a final tau protein pet scan
these testings will tell me where i am with my disease

it will be my new baseline moving forward
i will be watching the research closely to see what to do with future treatments
if i can not get the testing released i will pay to do my own amyloid pet scan and tau pet scan
the mri i get to see its reading and i can score my own memory testing as i go

i will be able to plan my life accordingly

i expect i will take intermittent dosing of one of the newer anti amyloid drugs
whichever works the best

it will be a different world for us moving forward
i look forward to it

i made the right choice over 8 years ago
it may be making a difference

the organicgreen doctor

1 comment:

  1. I hope they give you assess to your imaging. For heaven’s sake it’s your brain and your life.