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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 >