Well said, Carole

Carole M.



----- Original Message -----
From: "Carole Hercun" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, January 14, 2006 7:01 AM
Subject: Re: mirapex and requip / Another Point of View


> Because it works. For me. PD is a designer disease, and
> what works for one of us may not for another. I write now
> that I can no longer practice as a psychiatric nurse, and I
> need to be mentally alert, creative, etc.
> The Sinemet does that for me. I remember the first time I
> took it. I could almost hear those dormant brain synapses
> buzzing. I also take Mirapex as an adjunct med, and while
> it helps, it leaves me foggy and forgetful. I am now
> beginning to have some dyskenesia, which is a b---h, but I
> am dealing with it because the drug enables me to write,
> and walk.
> A last thought-L-dopa has been around a very long time. We
> know its side-effects, etc. As a nurse I saw many new meds
> marketed as having no s/e's. Prozac is a good example. Then
> a few years down the pike they are blaming it for
> everything from suicides on down.
> We have also seen good old reliable drugs turn out to be
> toxic, i.e., Tylenol and liver damage. So, I think its
> pretty much like life. You pick your poison, and you take
> your chances...
> Peace,
> Carole Hercun
>
> --- m power <[log in to unmask]> wrote:
>
>>   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
>>
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