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----- Original Message ----- 
From: "Diana M" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, June 14, 2008 4:51 PM
Subject: Basic questions re medication


> First, thank you again for the invaluable  responses to my query to this 
> list last December. It was those responses that urged me to see a 
> neurologist who specializes in movement disorders.
>
> I'm 66. I began to develop some pd symptoms 3 or 4 years ago, and was 
> provisionally diagnosed with pd 1 1/2 years ago by a neurologist who 
> prescribed Mirapex. He said there was no need to begin immediately--I 
> could start any time.
>
> I did not start on the Mirapex, because I am conservative regarding 
> pharmaceuticals. (Vioxx was prescribed for me and I declined to take it.) 
> Six months ago I found Janice Walton-Hadlock's book on "pdrecovery" 
> according to the principles of Asian medicine, and I followed the 
> prescribed routine till now with inconclusive results. I saw the 
> neurologist specializing in movement disorders two weeks ago, and he 
> confirmed the diagnosis, saying it looks very much like pd, AND he said 
> that it is progressing.
>
> Neurologist 2 (the movement disorder specialist) prescribed Sinemet rather 
> than Mirapex AND he pressed me to start taking it right away. He said 
> there is some recent evidence that patients who start on meds early do 
> better for longer than those who postpone it. He promised to supply the 
> citation, and I will call his office in a few days to get it.
>
> Here are my questions:
>
> 1) What can you tell me about the advantages and disadvantages of starting 
> meds sooner rather than later? Do you know what study or studies 
> Neurologist 2 may have been referring to?  No, I dont have a citation but 
> think
in terms of quality of life.  If you have reached a point where meds would 
help, why not
take them to improve your current quality of life.  There may be some side 
effects down the
road, but many things can happen between now and then.  I used amantidine 
before I tried an
agonist and it helped for 9 months.  I tried agonist but one made me sleepy 
and one gave me
GI issues.  So I use sinemet.  I researched agonist vs sinemet and both have 
possible side
effects.  I forget the exact numbers now but dyskinesias were the worst 
sinemet side effect and something
elsse was worse for agonists.  Dyskinesias can be minor or major.  You'll 
find that docs dont
have all the answers--get one that allows you to suggest things.  For 
example, as soon as I started sinement, I started
comtan also.  There was a study that showed that dyskinesias can be 
postponed by earlier use of comtan.
Typically, comtan was not used until the dysk appeared.
>
> 2) Mirapex or Sinemet or something else? What should I know to help with 
> the decision? (Of course I will question both neurologists about this.) 
> Remember, there are posssible side effects for both.
>
> 3) Neurologist 2  said I should take the Sinemet in increasing doses. I 
> can't read his handwriting, but it looks like 100/2? three times a day. 
> First week: 1/2 pill 3x day. Second week: 1 pill 3x day. Third week: 1 1/2 
> pills 3x day. If I do start Sinemet, should I look more closely at dosage, 
> and consider alternative dosages?  This is called titration.  Use just 
> enough to help you
improve quality of life.
>
> 4) Does anyone have any experience with herbs, particularly passion 
> flower, evening primrose, gingko, milk thistle, grape seed, or pinebark 
> extract, in treating PD?
>
> Thanks in advance.
>
> Diana
>
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