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Dear List-Family... (Loooong message - you're forewarned)

Recently I started with a new non-movement-disorder neuro at my local Kaiser
Permanente (ASIDE: for non-USA residents:  Kaiser's considered industry-wide
to be the premier HMO in the USA) <and in my own experience, I concur>.

Doc Neuro and I got off to kind of a rocky start as we both tried to let the
other know who was the PD expert between the two of us.  Eventually I won that
argument, and things have been very cordial between the Doc 'n me.  He now
LISTENS to me AND considers what I have to say about the disease and how it
effects my own body as useful information in treating me.  I accord HIM the
same courtesy. <smile>

At my initial office visit with Doc Neuro he told me I should go on the newly
marketed PD drug, Mirapex.   At that time, I declined because the only PD drug
I was then taking was a minimal daily dose of Sinemet, plus a 1/2 of a Paxil
in the a.m. and a buncha vitamins.   After discussing my possibly taking
Mirapex here amongst our List-Family here online, where the consensus of
opinion was much like my own - "If it ain't broke, don't fix it," I declined
to take the new drug.

Two weeks ago Doc Neuro phoned me and ASKED me to try Mirapex FOR HIM.  It
seems that I'm the youngest (at 54 years old) PD patient by many years that
Doc Neuro treats and because of my age and the level of my PD am one of the
more articulate of his patients.   He mentioned that several of his elderly PD
patients are now on Mirapex with a mixed bag of results.  He said he's VERY
frustrated by the lack of feedback on the addition of this new drug to those
his elderly PD patients already take.  Apparently the feedback is not
generally verbal - his elderly PD patients either stop taking Mirapex pretty
rapidly after starting it, or continue.  He wants to know WHY in both cases.

I was asked to go on Mirapex and to follow the maker's suggested regimen, with
the understanding that should there be negative side effects, I could stop
taking the Mirapex immediately.  Doc Neuro asked me to log my thoughts and
physical response to Mirapex each day and to then share that information with
him.  I agreed to do so....

Because everyone else is posting their "Miirapex experiences" here on the List
for the benefit of our List-Family, I now add my own:

The first week I took my usual half  a 25/250 Sinemet 2 to 3 times daily (that
third dose is added if I go out for the evening and want to be "on" and
function well while socializing).  I took a 1/2 of a 0.25 mg Mirapex 3 times
daily with no noticeable difference in how I felt each day....neither
positive, or negative.  I felt the same as I usually feel despite the addition
of Mirapex.

The second week (last week), continuing to follow the maker's instruction, I
upped the Mirapex dosage to one whole tablet 3 times a day.

At that point, Doc Neuro and I both intuitively felt I should reduce each dose
of Sinemet I was taking by some unknown amount, however, the Mirapex maker
made no such suggestion to do that. Upon Doc Neurons consulting Kaiser's chief
clinical pharmacist who could only repeat the Mirapex maker's directions I
arbitrarily decided to chip off a corner of each 1/2 Sinemet tablets I took
and did so thereafter.

YIKES!!!!  Week-two, on whole Mirapex tablet 3 times per day was just AWFUL!!!
  With the initial daily dose of drugs, I developed a "spacey,"
not-of-this-world feeling along with an enhanced loss of balance and an
ability to bump into everything that was even remotely in my path! (glancing
at truly remarkable collection of bruises, cuts 'n scratches, and black 'n
blue marks) <rueful grin>

By mid-afternoon I started to feel like a slab of wood looks - rigid.
Admittedly, I wasn't as "wooden-like" last week as I had been in the months
before my 10/24/94 unilateral pallidotomy, but since I hadn't felt stiff or
wooden SINCE that surgery, I was VERY disturbed to suddenly feel that way once
again.

By mid-evening I was in pretty bad shape - for me.  Along with the rigidity
and balance disturbances, I had a truly creepy numbness in both my forearms
which lasted for hours.

By last week, I also became VERY short-tempered, which - considering I very
rarely have any temper at ALL (except for those times I find someone trying to
sell "universal cure-alls" to us here on the List!) <Grrrrrrr!!> - was
terribly disturbing to me.   I was conscious of this short-temperdness while
it was happening and mostly was able to not exhibit it publicly, but it sure
was an uncomfortable feeling - and an emotional strain - to feel I had to
constantly remain aware of the state of my temper so I wouldn't hurt anyone by
chewing 'em up and spitting 'em out verbally.

In the two weeks I was on Mirapex I experienced a "flip-flop" movement by
evening in my left hand - that being the side that WASN'T the recipient of the
great benefits of the 10//94 pallidotomy.  I also had mild dyskenisia or
dystonia (I'm not sure of the difference, to tell ya the truth) by the time
each evening rolled around.  I had not been bothered by either symptom since
my  pallidotomy and prior to the Mirapex.

After two full weeks on Mirapex, I decided not to continue taking the drug as
there appeared to be no positive benefits for me, and there was several
negative side effects (tho I realize and am thankful these side effects
weren't as bad as those SOME of our List-Family suffered).  I believe that
Mirapex isn't expected to produce positive effects in such a brief amount of
time as I took it, however, I am not willing to put up with the negative side
effects to see if that's true.

As of last night I'm not on Mirapex and have discontinued taking it
altogether.  Today I feel like a junkie who needs a fix, stopping just short
of climbing the walls! <'nother rueful grin>

And THAT, m'dear Cyber-Family and friends is the story of "Barb Does the
Mirapex Thing."

Barb Mallut
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