my story revisited #72-born too soon

MY STORY REVISITED  #72-BORN TO SOON

this morning when i was reading my old blogs from 8 years ago this blog called
born too soon
caught my eye
why
its where my story with mci due to alzheimers disease intersects with mr hudsons story with his kidney transplant

there is a product called intravenous immunoglobulin or ivig
it is antibodies that are collected from plasma donors
these are given for various medical conditions
the product is scarce and expensive

in 2012 an alzheimers research study was being done where patients with alzheimers disease was given this ivig to see if it would slow down alzheimers dosease
the thinking was there was something in the brain of alzheimers disease patients that these antibodies would work against to slow down alzheimers disease
in the study the higher dose of the ivig seemed to slow down the disease
so there was something in the body that these antibodies was working on 
some thought it might be anyloid plaques

i tried to get in the study but my disease was way too early to qualify
i tried to get my younger brother to enter the study but time and distance didnt allow that to happen
the study was stopped after 3 years

enter about 4 years later i was able to enter my biogen aducanumab study receiving infusions of biogens monoclonal antibody against amyloid
this next month i should restart my infusions for at least about 2 years
there is still a push to get it approved for use by the fda

why this ivig blog caught my eye is
mr hudson is now 6 months out from his kidney transplant from a live donor
he is a typical 2 year old
he loves the dirt he loves trucks he love cars he loves ms b and mommy and daddy and gma
his development was delayed prior to his transplant
but
now since his transplant he is back to normal development for his age
he is a rambunctious 2 year old
you would never know he had issues unless you see his big ole scar down his belly or his gtube button that he uses to keep the kidney hydrated all day and to take his meds

recently he has developed a viral infection in his kidney that is a virus that you and i are exposed to but we are able to corral it and control it with our immune system
this virus if not controlled can kill the kidneys
mr hudson is immunosuppressed from his kidney rejection meds

these drug doses were lowered enough to try to let his immune system kick in enough to kill the virus but not so low that his body wouldnt reject the kidney
this is working but not wiping out the virus
so
in the next week
mr hudson will enter the hospital and receive a several hours of infusion of ivig or intravenous immunoglobulin that should wipe out this virus

i sit her thinking about how these antibodies im taking a monoclonal antibody against amyloid may be helping me slow down my disease
then
mr hudson will be getting ivig with its antibodies against the virus thats attacking his kidney 
the end result should be those anitbodies should kill that mean ole virus

i wish he and i could lay in the bed together getting our infusions of antibodies at the same time
mine helping my brain and his helping his kidneys

i know he would love if that could happen
__________
07-20-2012
WAS BORN TOO SOON

if you have a family member or friend with alzheimers

or have a strong family history of alzheimers then 

you might want to read this

yep think i was born too soon 

wished i was born 15 years later

why

the studies on alzheimers showing promising findings

is starting to steam roll

although im participating in one of the biggest and

most important studies on alzheimers ever done

i wish i were younger so that i could some day 

benefit from these findings

at least those of you are younger than me and my kids

and my nieces and nephews and one day my grandkids

will all benefit

those who would have gotten alzheimers will actually 

be dying from something else since treatments will be

available to prevent and treat this disease

nothing we have available does this except we are

getting close

ivig (intravenous immunoglobulins)-they take the plasma 

from plasma donors and remove all the immunoglobulins that

fight inflammation disease and infections including antibodies

against that on bad sticky stuff beta anyloid and it is given in 

a vein as an infusion

you know some of you when you were younger in college

needed money so you donated at a plasma center 

thats where this stuff comes from

its not new and is actually available now

its used now against certain neurological diseases as 

multiple sclerosis myasthenia gravis some demyelinating 

polyneuropathies eg

its not approved by fda for use in alzheimers

the supply is limited

and its very very expensive 

they gave this ivig to patients with alzheimers then followed them 

for several months and those who received the higher doses

got good results

with alzheimers when you have it and show symptoms the decline

is noticeable over 3 years

everyone in this study showed a noticeable decline in progressive

symptoms

those who received the higher doses did not have any 

worsening of their alzheimers  in 3 years

if you have anyone in your family who has alzheimers you know

this is an important result

my mother went from driving her car although she shouldnt have 

to being unable to care for herself in three years

the same happened to my younger brother

now the problem is this stuff is available now

it can be given to someone and they may not progress in their

disease

they dont get better but they dont get worse

on the horizon and in the final stages of studies are at least three

infusions that contain either man made antibodies or something 

that induces the patient to make antibodies against beta amyloid

those results will be published soon so well 

know whether this approach will work against alzheimers

the ivig study implies that it will

if i have alzheimers i would be a good candidate for use of one of

thiese iv infusions since im so early in the process

and only a small amount of damage has been done so far

the progression of the disease could be stopped and i would

not develop full blown alzheimers

another important study is the genome project

luckily i am one of 800 people in this study 

using dna obtained in the adni study that im in

basically they will take blood and will do a whole genome

sequencing (all 6 billion letters in my dna) that will take 4 months to do 

they will basically map out all of my dna and genes

they then will take this information and compare it to my 

neuropsychological exams my mris my beta amyloid pet scans

and other tests done in the study

and scientist all over the world will use this information for 

research 

this genome project may end up creating a world without 

alzheimers according to one researcher

we  sure hope so

yep i was born 15 years too early 

__________

maybe i wasnt born too soon after all since i will be getting infusions again
mr hudson we will all be with you in that hospital room this week

the organicgreen doctor