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AVFerris:  Sinemet (carbidopa/levadopa) is a potent drug and its side effects
do increase over time and neurologists usually don't prescribe it in the
early stages of PD.  When a patient finds that slowness and rigidity
interferes too much with what needs to be done at work or home,  Sinemet is
usually started at low doses like 25/100 two  or three times a day.  If the
patient doesn't expect to be symptom free and is satisfied with feeling some
better, and can keep the dosage low, he can  often go for at least two to
five years without too many side  effects.  This depends upon the person -
some don't do as well and some can go for more than five years without side
effects.  Sometimes other PD drugs are added and Sinemet is cut lower to
lessen the untoward effects.  In the event of Sinemet problems there are a
number of drugs that can do a decent job if given with lowered doses of
Sinemet.  You need to see a doctor who is up to date on PD and treats a lot
of PD patients.
 
It is important to learn all you can about the disease.  There are some
really good PD handbooks and of course getting on the mailing list for all
the PD organization newsletters keeps you pretty well up to date.  Join a
support group as well - you can learn a lot from other patients on how they
cope with PD symptoms and medicine side effects.
 
You need to find out about the controlled release Sinemet as compared with
regular Sinemet.  I'm on controlled release and I'm not sold on it although I
think most PD specialists are using CR now on many of their patients.  I just
don't think we know enough about its long term effect.  THEY say it helps
prevent the wearing off and the on/off syndrome.  CR is fairly new - two or
three years - and I question its effectiveness.  It certainly can be slow
starting.  I've only been taking CR for eight months so maybe someone on the
list who knows  something more can jump right in here and give us the
straight  poop on Sinemet and COMT (I understand this is like fowling up of
spark plugs or yellow build-up on waxed floors).
 
There is no question that Sinemet is about all we've  got - it is good but we
need something better - a better Sinemet CR.  Maybe instead of a matrix it
should be "hundreds of tiny time tablets" that dissolve more evenly.
 
Barbara Yacos
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