Cari,
I am taking 12-14 25/100 per day.  My last neuro had patients taking 20 a day.  I have had PD 12 years and have been taking over 10 sinemet for about 10 years.  I think there are more PWP's taking larger doses than you realize. I believe that the Sinemet scare is hogwash.  If you are having problems with side effects I'd personally look to the agonists, and other meds first.  I had terrible problems with mirapex and eldepryl, and Sinemet CR took to long to work

Good luck.

Greg 47/35/35

I am a firm believer that if you want relief, especially after many years, then sinemet is the way to go.

----- Original Message ----- 
From: "Cari Barrett" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, June 20, 2000 4:15 PM
Subject: Subject: Sinemet Savvy Members (formerly Re: freezing)


> Thank you Experts for your feedback (Ron I'm still trying to get to your
> info!)
> I didn't want to mention any names when I sent the message out originally,
> but am please with your feedbacks so far.
> 
> Further clarification:
> 
> Greg/Q: if your Dad is doing so poorly I'd try another Dr.
> CARI/A: It's not that he's doing poorly - I just believe that this is one of
> the battles that PWP must face.  Unfortunately he doesn't have anyone
> physically around him to observe him / keep the much needed daily journal /
> etc.  So, I do what I can with the info I get or while visiting my parents.
> We're in pretty good shape as far as taking the meds so that his "off"
> periods are minimized as much as possible.  Plus, stress play so much a part
> of his problems that it's difficult even when the meds are correct!
> 
> GREG/Q: The med mix he's taking sounds bizarre to me.  What good can 1/4 tab
> of sinemet really do?
> CARI/A: Actually, 1/4 chewed/crushed or whatever supplies a much needed boost
> when needed - it has "some" worth!
> 
> GREG/C: Sinemet CR is not suppose to be broken according to manufacturer.
> CARI/Q: I know, and I saw Kathryn's response as well about the scoring -
> which is why we're considering that smaller script of CR -
> 
> GREG/C: I just read an article by Dr. Iacino in CA which stated the standard
> gauge for sinemet is about 1- 25/100 tablet per year of PD.
> CARI/A: Do you mean that he would be taking fifteen 25/100 per day?  I don't
> think anyone is using that "formula" - but I know it's theory. . .
> Believe me - your lay opinion is valuable to us all!
> 
> 
> On Mon, 19 Jun 2000 16:04:33 EDT Cari Barrett <[log in to unmask]>
> writes:
>  1.  we are always trying to balance out the dyskinesia with the
>  Tasmar/Sinemet 25-100
> 
> IVAN/C: Cari, You can  try cutting the Tasmar down to 50 m  per dose,
> by splitting the 100 mg tablets with a pill-cutter.  . .
> CARI/A: No, we haven't tried that yet - but I'll check with his doctor and
> see what he thinks, especially for the 11a dose
> >
> > 2.  he has an extremely hard time (usually) getting up in the
> > morning,
> 
> GREG/Q: ... have you tried giving your dad Sinemet or SInemet CR
> after 5 PM??  His body will require some dopamine throughout
> the night.  I am pretty sure that this will reduce his morning
> difficulties.
> CARI/A: yes, we've tried that and it didn't do anything for the morning
> problem - it did, however, assist in adventurous and sometimes physical
> dreams at night!
> Assuming that the CR has the three hour lifespan - your schedule makes sense
> - especially the 3:45a dose - however I can't see my Mom getting up to give
> it to him.  And I don't know if he could do it himself if he set his alarm -
> but we might try it -
> thanks - Ivan
> 
> QUESTION TO ALL:  how many of you take doses throughout the night?  Just
> curious to see how it affects YOUR morning abilities.
> 
> 
> ----- Original Message  (partial)-----
> From: "Cari Barrett" <[log in to unmask]>
> Sent: Monday, June 19, 2000 4:04 PM
> 
> > In the constant quest of finding the best combination of sinemet, agonists
> > and timing - I don't understand how so many are taking full doses of Sinemet
> > 25-100 and CR 50-200 repeatedly during the day -
> > while my dad, after 15 years
> > (AND, remember this is the guy whose  doctor said he's at the "End"...)
> > > is only taking -
> 
> > Sinemet 25-100
> > 1/4     6a, 9a, 2p,5p
> >
> > CR 50-200
> > 1/2         6a
> > 1/4           9a, 2p, 5p
> >
> > Permax  1mg
> > 1           6a, 11a, 2p
> 
> > Tasmar  100  mg
> > 1           6a, 11a
> >
> > 1.  we are always trying to balance out the dyskinesia with the
> > Tasmar/Sinemet 25-100
> >
> > 2.  he has an extremely hard time (usually) getting up in the morning, so
> > chews up his 6a 1/4 Sinemet 25-100
> >
> > 3.  We are considering the CR 25-100 now that you all told me exists, but
> > haven't done it yet - as we realize that 1/2-ing and 1/4-ing the CR is
> insane
> > - but if he takes 1/2 CR at 9a for several days - he's totally hyper and
> out of
> > control until the evening -
> >
> > if he takes 1/4 CR at 9a for several days (during our "trial periods") he
> can
> > hardly get out of bed at all, has little or no energy  -
> 
> 
> 
> 
> Cari
>   daughter of Dempsey-PWP (71/16+)
>   & Jo Ann-CGiver
>