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Laurance,

I've written about pramipexole before, but will try to expand a little
for you.

I've been part of the research trial of pp at Washington University in
St. Louis for three years.  The first year was a double blind study, and
I did very well on a supposedly high level of the medication.  The second
year I definitely received pramipexole, but didn't do quite as well
because I had to take a lower dosage due to chest pains which, as it
turned out, were unrelated to the medication.

During the third year I accidentally took a bit more medication for a
week and felt so much better I prevailed upon the drug company to
increase the dosage slightly.  This brought about a short term
improvement, but after a while I didn't notice any difference.  I still
have too many "off" times, alternating with dyskinesia.

This is  what bothers me about the study.  Every three months I go for a
checkup. I'm asked very specific questions and given the same performance
tests, plus blood and urine tests and an ekg.  When I volunteer
information about some of the problems I'm having, they're ignored and
never addressed. For example, others have noted the problem of extreme
drowsiness, especially while driving.  This occurs usually about a half
hour after taking the dose of sinemet CR which was preceded by the
pramipexole.  My doctor's solution was for me to stop driving, but I'm
not ready to give that up yet.  Since pramipexole is a helper drug, it
doesn't work when the sinemet isn't working.  Several years ago,
MaryHelen Davila remarked that pramipexole seemed to become less
effective over time, and I would agree with that.

That is not to say it isn't a useful drug.  It seems to be more specific
than parlodel or permax, which have more of a shotgun effect; this drug
targets particular receptors.  However, it's not a wonder drug and not
without side effects. Other substances, such as NADH, seem more
promising; however, no one here seems to be doing anything about it,
probably because it's not profitable enough.

A member of our support group contends that a cure ism't being found for
pd because the drug industry won't allow it.  Medications are too
profitable.  I know since I switched from sinemet 10/100's to the Cr's,
my bill for a month's supply has gone from $39 to $247.  That's a
phenomenal increase.  It seems to me that everyone sees dollar signs in
this drug and so they don't want to entertain any negative thoughts about
it.  In the meantime, the problems I have with it are ignored.

I don't mean to sound negative, but am trying to give you a fair picture
of the drug as I see it.  Hope the information helps.

Pat Schark



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