Just to share some personal experience - My husband has mainly been "self-
managing " his medical regimen for the 12 yrs, since the V.A. would see him
every 6 months for l5 min. and ask "what refills do you think you need me to
write". During that time we practiced the general rules of doing everything
gradually
and maintain on the lowest med. doses possible. Our feelings were that the
Sinimet (given the miracle that it is) can also produce PD symptoms if taken
in
too frequent of doses. Periodically, we would forget a dose and often he felt
even
better after the unexpected wearing off time. The highest he has ever been on
Sinimet is l000mg/day.. 6 hour intervals /250 mg. st. The six hour interval
seems
to be the magical number for him.
This past year he is finally seeing what we consider his first real
neurologist
since the beginning and he advocates doing one thing at a time, gradually,
over
3 month recheck periods. My husbands basic med history is as follows:
Cogentin first two years alone got
up to 8mg/day
Still on 2 X .5mg/day for
tremors (have tried to
back off completely- always
has relapse of
worse tremors)
Sinimet Past l0 years - just starting
to have some
indicators of possible
"off" but still not sure.
Some "rolling" occurs but
feel also due to
overabsorbtion of
Sinimet???Don't know, Dr.
can't give definitive
answer either-
Stiffness and rigidity
increasing some, but
again, more "loseness"
when careful about
doses and intervals of
Sinimet.
It's all a real balancing act...The new Dr. tried to compress the
intervals to
start with - but no way, he got much worse quickly. Back to 6 hour intervals.
Bromocriptine started four months back -
seems to be
helping - l5 mg/day
now - reduced Sinimet
to 600mg level
(been on Sinimet Cr for
over l yr - can't
say it's significantly better
than St. )
The real pain about this disease is that everyone responds differently to meds
and
even their systems are changing continually - but maybe this example will be
of
some help in your considerations for yourself. One more thing we did - kept
our
own confidence about using our own feedback and theories ,in conjunction with
the doctors expertise - since they all seem to be kind of "fishing" for
answers too.
One thing my husband doesn't want to become is anyone's "guinie pig". So be
careful, learn, trust your own instincts,,,and best of God's blessings to
you...
Marie
(e-mail : [log in to unmask])
