Jorge,

In your opinion, why don't we have an equal or better medication for Sinemet
after all these years?  Is it mainly a sleeping set of symptoms that didn't
get enough publicity until recently?  Is it pharmaceutical companies fearing
too small a market?
Is it scientists searching for a "lost cause" cause of the disease rather
than medications that would improve quality of living?

Over the years, a great deal of money has been allocated for research.  I
can't help but wonder what projects were granted and how many of these
scientific endeavors resulted in utilitarian benefits for patients.

One final question.  Is Sinemet also a primary medication for other
neurological diseases that carry a different set of symptoms?

In thought and mind; in caring and friendship,
E of the headdress

----- Original Message -----
From: "Jorge Romero MD" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, June 15, 2002 8:47 PM
Subject: Re: to Sinemet or not to Sinemet


> The introduction of Sinemet nearly doubled the life expectancy after
> diagnosis and improved the quality of life of PWP.  That's an unbeaten
track
> record dating back to 1970.
>
> The claims of the agonists to be neuroprotective needs to be taken with a
> grain of salt.  Remember Selegiline (Eldepryl) in the early 1990's.  It
was
> thought to be neuroprotective until it fizzled out, while the drug company
> which promoted it made millions.
>
> The recent evidence for neuroprotection for Requip and Mirapex is based on
> radioisotope uptake studies.  The clinical part of those studies using the
> UPDRS DOES NOT support those claims.
>
> The longest of the two studies, the Mirapex (pramipexole)  study was for
46
> months - almost 4 years.
>
> At the end of those 4 years, the change in the total UPDRS score was 4.1
in
> the pramipexole group, and 4.0 in the levodopa group (the less the change,
> the less the deterioration, so if you even look at "trends" the levodopa
> group was better, if anything, after 46 months).  These two figures were
> "not statistically significant."  (That means that formally speaking,
there
> is no difference.)  The authors themselves were puzzled and tried to
explain
> this problem.
>
> "Prior longitudinal studies there has been no clear correlation between
the
> change in radioisotope uptake and the change in UPDRS score."
>
> "Several explanation for this poor correlation have been suggested.
First,
> the UPDRS score is CONFOUNDED by the effects of anti-PD medications."
>
> <<<<
> BY THE WAY, this confounding should FAVOR pramipexole - so DESPITE this
> confounding stacking of the deck in favor of pramipexole, pramipexole was
> not superior to levodopa after four years with respect to the UPDRS
scores.
> <<<<
>
> The authors further claim that "early in Parkinson's disease the tempral
> patterns for the rate of loss of the dopamine transporter and the change
in
> the UPDRS score MAY NOT BE CONGRUENT.
>
> <<<<<<<
> So the drug company would have us throw away the UPDRS data and buy their
> drug, when the UPDRS scale has had wide acceptance and utilization for
> several years as the best available research scale for following the
> clinical course of the disease.
> <<<<<<<
>
> Be cautious.  This bandwagon is not very solid.
>
> Jorge Romero MD
>
>
> ----- Original Message -----
> From: "supermario" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, June 15, 2002 6:59 PM
> Subject: Re: to Sinemet or not to Sinemet
>
>
> > Thanks God for Sinemet..
> >
> > M
> >
> >
> > ----- Original Message -----
> > From: "G. Hertz" <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Saturday, June 15, 2002 3:57 PM
> > Subject: to Sinemet or not to Sinemet
> >
> >
> > > Hi Don. To Sinemet or not to Sinemet... that seems to be the question
in
> a
> > > lot of posts. When I was officially diagnosed  over 9 years ago the
> first
> > > thing the neuro wanted to do was put me on sinemet or another med. I
> > > declined because I was breastfeeding my daughter at the time. [That
> neuro
> > > was not a good"fit" anyway] When I was ready to take meds 1 and a half
> > years
> > > later, I started with the dopamine agonists and after about a year or
so
> > > started on sinemet.  It was what I needed to do at the time to keep my
> > life
> > > on track. After about 5 years more I decided to go for a thalamic DBS
> for
> > my
> > > right side. Again, this brought me back on track for ADLs and work. I
> have
> > > spent most of my time on meds forgetting that I have Parkinson's. The
> > > reminder comes when meds wear off and I take another dose. I couldn't
> > > imagine *not* having been on sinemet. It has improved my quality of
life
> > > tremendously.  I, like you, would rather have my Sinemet now and live
as
> > > full a life as possible. If it does mean I will reach end-stage PD
> sooner
> > > (I've never seen an estimate of time - what does holding off buy
you -3
> > > months? a year? 3 years?) then so be it. Is there any guarantee
Sinemet
> > will
> > > bring you back to normal functioning if you hold off til you're
*really*
> > > bad? Will you need higher doses because you have deteriorated for
> another
> > > year? I don't know. The progression of PD is so different in different
> > > people.
> > >
> > > What about the alternative "stuff" that has dopamine in it - does it
> count
> > > towards your "Sinemet debt"?
> > >
> > > I'm reminded of the often repeated story of people that save all their
> > money
> > > being workaholics so when they retire they can 1) take that trek
through
> > > Europe that they've always dreamed of   2)buy a motor home and spend
the
> > > next year visiting  all their grandchildren   3) retire to Florida  or
> 4)
> > > fill in the blank__________... only to find that one member of the
> couple
> > > becomes ill or dies without having the opportunity to do the things
they
> > put
> > > off.
> > >
> > > A friend of mine who has a son with Down Syndrome coined the phrase
> > > "pre-disastered". Meaning the view that since he has Down Syndrome -
> > nothing
> > > else bad will happen to him.  It's easy with Parkinson's to feel the
> same
> > > way. Somewhere in the back of your brain you think "I won't get cancer
> or
> > > heart disease or whatever - I have PD".
> > >
> > > My favorite bumper sticker says: Enjoy life. This is not a dress
> > rehearsal.
> > >
> > > Gail H.  age 42 PD for 13 years
>
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