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hi gerry - brig is extremely fortunate, and not just
if her onset was on the young side.

a 1987 study  (Quinn N, Movement Disorders, Vol 2, No
2, pp. 73-91, 1987) showed the following regarding
young onset (under 40) and l-dopa:

20% chance of dyskinesias within one month on l-dopa
55% chance within one year
74% chance within four years (at 2 year mark, 50% of
dyskinesias classified as “often causing functional
disability”)
100% chance within six years
and
10% chance of on/off fluctuations within one month on
l-dopa
38% chance within one year
50% chance within 2-3 years
96% chance within 6 years

In the 2004 article entitlled “Levodopa  in the
Treatment of PD: Current Controversies,” a team of
researchers led by Warren Olanow states that DOOFs
occur in approximately 50 - 80% of PD patients who
have received l-dopa for more than 5 to 10 years,”*
which is telling even in spite of its ambiguity.

In May 2005, Olanow made a presentation as part of a
Continuing Medical Education event called “Spotlight
on Parkinson’s” in which he was considerably less
ambiguous, saying “motor complications affect
approximately 80% of patients treated with levodopa
for > 5 years” and “develop in approximately 100% of
young-onset PD patients.”’

Dr. Kapil Sethi cites a 1997 study by John Nutt
published in the Annals of Neurology (for which one
cannot even pay for access) in his presentation at the
same Continuing Medical Education event  saying that
“a majority of patients develop motor fluctuations
even during the first year of therapy,” and, from the
DATATOP trial,  “wearing-off has been reported in 50%
of patient within two years of L-dopa therapy.”

I know I saw Stanley Fahn also quoted as citing the
80% number - can’t remember if it was within 5 or 10
years - but can’t lay my hand on it right now.

A 2005 study (Kumar N, Movement Disorders, Vol 20, No
3, pp 342-366, 2005) found that within 5 years, onset
at age 40-49* had a 40% chance of developing
dyskinesias, 50-59 had a 53% chance, 60-69 a 26%
chance, 70-79 a 16% chance, and 80-89 a 14% chance.

*this particular age group only had a population of 5
people in this study - the next three age groups
ranged from 19-35 people in size, and 80-89 consisted
of 7 people

Perhaps the most telling thing I have read so far was
published in The Lancet a mere 10 years after l-dopa
came to market in 1967. Unfortunately,The Lancet’s
online archives do not go back to 1977, but there is
an “abstract” on PubMed, and it says that patients
undergoing long-term treatment with levodopa may run
into problems, two of which:

“...have emerged as frequent and serious, an insidious
and progressive loss of benefit and the appearance of
progessively more severe fluctuations in
disability....Discovery of the exact causes for loss
of benefit may provide a rational basis for new
therapy.”

So as long as 30 yearsago, l-dopa was acknowledged to
be *inadequate,* both in terms of benefit (or loss
thereof) and side effects, and yet it is still touted
as the “gold standard.”

Yes, everyone is different, and Brig is extremely
fortunate- but if I had started l-dopa five years ago,
I would be a mess today, and I wonder how many others
there are or were out there like me - i also wonder
what the definition of “toxic” is.

I mean please - they called the Freed/Fahn fetal
tissue transplantation study a failure because 15% of
the subjects experienced non-levodopa induced
dyskinesias even though according to at least one
measure, there was "significant" improvement when off
medication both in the transplant group as a whole and
in the younger patients in the group - and at the same
time, levodopa, which has an 80 - 100% chance of
causing dyskinesias which, after 2 years, have a 50%
chance (at least in young-onset,) of being
functionally disabling, is hailed as the gold
standard?

It is hard to be sure that that comparison is valid
without a PhD in neurology... but if it is, who,
exactly, is doing the math, here?

mackenzie

--- Gerry Haines <[log in to unmask]> wrote:

> For info., Brig has been on Sinemet for 20 years and
> is now experiencing
> some movement./
> Everyone is different.
> Gerry
>
>
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