Print

Print


Mackenzie --
You have brought up some good points.  Both Mirapex and Requip seem to
benefit some people without too many troubling side effects.  It is the same
with any drug.  Take, for example, the recent issues with E.D. and arthritis
drugs.  However, in this case I think the statistics may be misleading and
the compulsive problems related to some of the PD drugs may be quite
under-reported.  Shame and embarrassment are two of the major reasons why.
The trouble with statistics is that they can be interpreted to say whatever
one wants them to say.  When the devastation touches your life personally,
it becomes more than just a small statistic.

All drugs have side effects and at this time there is no drug that will cure
PD.  Not Sinemet, not Mirapex, not Requip.  that is the harsh reality.  They
all only mask the symptoms.  Sinemet has been the gold standard because that
was about all there that was and the side effects didn't include losing
everything a family had to gambling debts or having a person transformed
into someone with which loved ones could no longer reason or communicate.
These issues are just as disabling as the side effects of levodopa therapy,
if not more.  A lot of people seem to be more understanding if someone has a
disease than if they have an addiction -- which is often construed as a
personal weakness that they could do something about if they only would
exert a little more will power.  That is very wrong in this case!!!  People
need to be aware of the side effects of whatever drugs they consume.
Especially the potentially devastating ones.  Lives and families are being
wrecked.  Someone summed it up best when they said something to the effect
that it is difficult enough to deal with PD much less to have to deal with
drug-induced compulsive issues on top of that.  Families and loved ones
don't feel like they have a chance.

Until recently there has been little effort to develop other treatments
beyond levodopa therapy because there was little money in it and almost no
publicity about the problem.  The percentage of the population affected was
construed to be just too small.  That has changed.  As is often said about
our materialistic society these days, follow the money.

Kind regards,
Carole



----- Original Message -----
From: "m power" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 13, 2006 9:45 PM
Subject: Re: mirapex and requip


>  hi all,
>
>  in what i am about to say, i am speaking in general terms - i do not mean
> to minimize anyone's experience of the side effect of obsessive behavior.
>
>  In the study that came out in 2003, 1.5% of the people who were put on
> mirapex developed serious gambling addictions - that is "only slightly
> higher than the reported rate in the general population, which ranges from
> 0.3 to 1.3%." does anyone know if that is even statistically
> significant?(http://www.abc.net.au/science/news/health/HealthRepublish_922460.htm)
>
>  by contrast, 100% of early onset folks put on l-dopa will develop both
> dyskinesias and on/off fluctuations within 6 years (see Quinn, Young Onset
> Parkinson's Disease, 1987, Movement Disorders, Vol. 2, no.2, p. 73-91) and
> 75% of people put on l-dopa "will no longer have a smooth, stable and
> effective response" after five years of treatment - in other words, 75%
> overall will develop dyskinesias and on/off fluctuations within five years
> (see Fahn, Parkinson Disease, The Effect of Levodopa and the ELLDOPA
> trial, Archives of Neurology, 1999)
>
>  i am curious - i do not experience on/off fluctuations or dyskinesias,
> having never taken l-dopa, because looking in from the outside, it looks
> like somewhere i would do everything i could to avoid going. and yet,
> people rarely talk about them (and they certainly don't get the press 1.5%
> gambling does, but of course that could be because these other statistics
> have been well known in the research community for at least 20 years) -
> are they just not as bad as i think they are? or are folks resigned to
> experiencing them because l-dopa is the only thing that works (or worked)
> for them? or do folks not know that the risk is so high until it is upon
> them?
>
>  if anyone has any thoughts on the subject, i would love to hear them. i
> simply cannot understand how a drug that has such a gargantuan chance of
> leaving people with disabling side effects has been "the gold standard"'
> for about 40 years.
>
>  mackenzie
>
>
> Beverly Forte <[log in to unmask]> wrote:  I too stopped Mirapex because
> of some compulsive behaviors and my
> neurologist refuses to give me Requip. I had dbs brain surgery in Dec
> 2005.
> After stopping the mirapex i went into a deep depression which does not
> seem
> responsive to antidepressents. My energy is also extremely low. Obsessive
> behaviors now? Nope.. I am lucky to get out of bed every day. Has anyone
> had
> this experience and any suggestions? I have a doctor's app Jan 16th and
> hope
> to have my own suggestions.
>
> Thanks...for sharing.
>
> Bev in Tex
>
> ----- Original Message -----
> From: "Automatic digest processor"
>
> To: "Recipients of PARKINSN digests"
>
> Sent: Thursday, January 12, 2006 11:32 PM
> Subject: PARKINSN Digest - 11 Jan 2006 to 12 Jan 2006 (#2006-18)
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
>
>
>
> ---------------------------------
> Yahoo! Photos - Showcase holiday pictures in hardcover
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
> Photo Books. You design it and we'll bind it!
>
>

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn