hi jeff and joan

jeff wrote:
>My wife (54/4) is taking a significant amount of medication
>an increasingly more frequent intervals.
>Every 1 3/4 hours (one and three quarters hours)
>she takes 1 Sinemet 25/100, 2 Sinemet CR 25/100
>and 3/8 or 3/4 mg Mirapex.
>Somewhat less often when she is sleeping.
>Has anyone had experience with these levels of usage?

i have to throw my two cents into the ring with ron vetter and barb mallut

pd is known as a 'designer-disease'
and as such, varies widely in symptoms and progression
from individual to individual

however, my initial impression is
that joan has been prescribed a huge amount
of dopamine replacement/dopamine agonist medication
especially so for someone who was diagnosed only four years ago

e.g. i was diagnosed in 1988
after witnessing the gradual onset and increase
of slowness of movement and muscle rigidity [bradykinesia]

i was examined by a neurologist
who confirmed pd and started me on sinemet right away
[since i was having so much difficulty walking and writing]

i was instructed to titrate the sinemet dose up very slowly
[over a period of three weeks] up to a dosage level of
25/250 sinemet[carbidopa/levodopa] x 2
and selegiline 5mg x 2

my neurologist told me then
that pd progresses very slowly - i would have no surprises -
i'd have time to make adjustments in my meds when necessary

after nine years
my selegiline dosage has remained constant
and my sinemet dosage has slowly been increased to 700-800mg per day

the greatest change in meds has been
the frequency of the sinemet dosage timing
in order to minimize the effects of developing 'on/off' periods
as the levodopa level rises and falls

e.g. i am now taking one-half sinemet 10/100 tab every 90 minutes,
instead of one whole sinemet 10/100 tab every140 minutes
this 'fine tuning' has enabled me to function
essentially normally with minimal 'off times'

[except, of course, for the known female hormone 'freeze'
or non-response to levodopa twice per monthly cycle]

assuming a fourteen hour active day
it appears that joan has been prescribed
a [minimum] daily total [excluding the mirapex] of:

1 Sinemet 25/100 x 8 =
200mg carbidopa; 800mg levodopa
and
2 Sinemet CR 25/100 x 8 =
400mg carbidopa, 1600mg levodopa
minus the effective loss of 25% of the CR tabs =
300mg carbidopa, 1200mg levodopa
resulting in an effective daily total of =

500mg carbidopa, 2000mg levodopa

from all i've learned about pd
and all i've read on this listserve since october 1995
these medication levels are disturbingly high
for such a newcomer to pd

since mirapex has only been available in the usa
[assuming you are american] since august 1997
i have to conclude that joan has been seen
by a neurologist during the past year

can you summarize her progression of symptoms
and her medical advice during the past four years?

unfortunately there still is a lot of misinformation out there
even among the medical/neuro community
about current pd medications

we all have to become our own best advocates
when it comes to symptom/meds management


your cyber-sibling

janet

janet paterson
50-9 / sinemet-selegiline-prozac
almonte-ontario-canada / [log in to unmask]