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Because of the recent spate of e-postings showing interest in
"drug
>holidays,"(DH) I was surprised that no one seemed to have much of an
opinion
>on these things.  I do not know that this should encourage anyone
to do one of
>these. As you might have guessed, I have an opinion.  My
experience=85
>
>The drug holiday:
>
>
>I understand that these are no big deal for certain folks whose PD varies
from
>mine.
>However, Drug holidays are the absolute pits for many PWP:
>
>Mine came as part of an evaluation for retirement--after three years
of
>Sinemet therapy.
>
>The hospital staff rarely laid hands on me after the admitting physical
exam.
>The first day things weren't too bad.  After that, I was hurting--a
lot.
>Seeing only bradykinesia, the staff had no idea how rigid (and
painful) my
>entire left side and especially my left leg was becoming.
>
>When I finally called a halt to this craziness at the end of 5 days, the
staff
>somehow determined that I was being a sissy.
>
>It took my first Sinemet dose about thirty minutes to work.  The
other
>patients and I  then witnessed an "awakening" as dramatic as if
Jesus Christ,
>himself had healed me.  I felt great.  However, my comfort,
my elation and my
>dose lasted about two hours.  Then I was back in my own
private world of pain
>until thirty minutes after my next dose--four hours
after the first.  I
>bounced around from great for two hours to near dead
for two hours and thirty
>minutes for about a month before I noticed "off"
felt bearable again.
>
>
>Speculation on how DHs work:
>
>
> I have observed that Sinemet (the most dramatic drug) and some of the
other
>anti PD drugs have both acute and chronic benefits for the PWP.
>
>1.  The acute benefit counters PD symptoms hourly, causing the "on" part
of
>the daily cycle of "on-off."
>When conscientious neurologists construct a "dose response curve," this
is
>what they plot.
>
>
>2.  The chronic benefit is responsible for the base line "off" that
improves
>over the course of six months--sometimes longer--after initiating
Sinemet (and
>perhaps others).  It took me about two months to regain the
ability to walk
>while "off."
>
>
>The best I can figure it, that drug holiday wiped out the chronic effect
of my
>three years on Sinemet.
>
>  I believe that DHs are now recommended very rarely and only in an
ICU
>setting.  Mine may have had a beneficial effect.  I was able to return
to work
>for a couple of years starting about six months post "holiday."
>
>My conclusions:
>
>1. IA DH is a far bigger deal than the hospital staff or I anticipated.
>2. It may have helped my PD symptoms.
>3. A DH is not a thing to be taken lightly.
>4. It would probably require a trip to hell to feel worse.
>
>Regards,
>WHH 54/18


Heit Bill,

I was very interested reading this, because I too feel sinemet has, next to
the=20
short time beneficial effect, a longer time a less beneficial effect, which
I can fight by taking a "short" drug holiday. My neuro however warns me
that a "long" drug holiday like you had, could have the disastrous long
term effects you describe. In his opinion it takes weeks before the total
effect of a no-sinemet scheme is reached. I never tried it. But 13 years
ago, starting for the first time to use sinemet, it took months before my
total condition ameliorated and the short term effect was predictable.
During the first years after that, the strategy I used to be  in good shape
on an important day, was to take the day before too small a dose. Therefore
I was not able that day to do the normal things.  This could be
conceptualised as a "short partial drug holiday". The next day( the
important one) it was possible to take a higher than normal dose, which for
one day was perfect, but if taken always would cause heavy wearing off
symptoms and possibly normal overdose symptoms. I found this strategy by
sheer trial and error and I don't know why it works. Before my pallidotomy
I could not use it any longer because, at that time every higher than
normal dose could cause many hours of wearing off dykinesia, which was
really hellish.
The effect of my pallidotomy has been, that I can use this strategy again.
I do have wearing off dyskinesia, but much less and only in my untreated
side. The extent to which all dyskinesia (whether start-, height- or end of
dose) has stopped in the other (treated) side is miraculous indeed.=20
So it seems my model must be different from yours. For me the one-day drug
holiday has a short time beneficial effect but I never dared to try your
long term drug holiday approach.

Kind regards, Ida Kamphuis, Holland

--------------------------------------------------------------
Vriendelijke Groeten / Kind regards,

Ida Kamphuis                            mailto: [log in to unmask]