Re: Upjohn drug trail PNU-95666E

[Pam Shapley <pamshapley@xxxxxxxxxxx>]

Hi John,

My name is  Pam Shapley, and I have been a lurker for about a year.  I am 
writing because I am also in the Upjohn drug trial PNU-95666E.  I am out of the 
blind phase and am in the open phase.  I am taking the maximum amount 
alloweded. (48mg.)  I am 50 years old and have been diagnosed with PD since 
January 1998.  My symptoms are only on my right side.  Loss of fine moter 
skills no arm swing, some tremor, limp, tired all the time.  I was "lucky" I 
was diagnosed right away.  That was due to in part the fact that I knew what I 
was looking at.  My Aunt had Parkinson's for about 20 years.  Some of you who 
have worked with Parkinson's Action Network and have seen the video "The Faces 
of Parkinson's" know who she is, my Aunt was Virginia Hayes.   

I have had fairly good results with Pnu-95666E.  Very few if any side effects.  
It is the only drug I am taking at this time.  During the blind phase I felt I 
was on the placebo up until the last two weeks of the 12 week period.  I now 
believe I just needed to get up to the maximum level to see results.  My Nuro 
feels that I could tolerate a higher dose and would see improved results, but 
the study only allows him to put me up to 48 mg.  My symptoms are reduced, but 
not completly gone.    When I went from the blind phase to the open phase I was 
slowl tapered off of the drug, then slowly incresed with the "real" drug.  
While I was off drug, my symptoms were bad.  I will stay with this program as 
long as it last.  My Nuro said as I progress I will need to add other 
medications since I am at the maximum.

Best of Luck,

Pam



----- Original Message -----
From: lamjam inc
Sent: Tuesday, March 27, 2001 11:55 AM
To: PARKINSN@xxxxxxxxxxxxxxxxxxxx
Subject: Upjohn drug trail PNU-95666E


Hi all.

I'm 46, diagnosed with PD in January, 2001, confirmed in February.  I =
started a Dopamine agonist drug trial (reference above) on February 26.  =
It runs twelve weeks.

My symptoms are loss of fine motor control on my left side ( I am typing =
this with one hand).  I have a noticeable limp.  I am tired all the =
time.  Folding socks is tough, etc.  I have no tremors.  I have =
suspected Parkinson for 18 months (it took awhile and 3 GP's to get =
diagnosed).

Does anyone have experience with this drug trial?  I am getting one of =
five does levels (maybe placebo).  I am trying to set my expectations =
for symptom relief.  How about similar symptom relief data with =
Miraplex?

Thanks.

John A. Maurer

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