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A MyParkinsonsTeam Member asked a question 💭
Mount Holly Springs, PA

Has anybody tried taking a half sinemet IR every half hour, sometimes stretched to an hour or so, to keep an even flow? I'm having way less off time and try to stay ahead of the dyskenisia. This seems to be my best result thus far. Rytary and sinemet cr doesn't cut it for me with too much off time.

June 17, 2023
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A MyParkinsonsTeam Member

I started doing it about a year ago when I was trying to keep dyskinesia at bay. Also, a whole pill would last me only an hour or two sometimes. Currently, I find it's almost too much to take a whole sinemet with diskenisia becoming really annoying. I do find it works pretty well for me and my off times are less, generally. Sometimes they don't kick in and I'll take a whole one but that's different all the time too. Of course you have to be on top of the timing but for me it's better than continuous release dopamine drugs. They simply don't work for me the way they're supposed to. My doctor was surprised that I prefer the halves, or even sometimes quarters, of sinemet. She suggested duopa but I'm not ready for that.
Protein, where do I begin lol. They say it affects the dose but I can't really tell. Sometimes it'll stop me cold, other times not. I think there's so much more going on in my body that it's always different day to day. They do have a new drug out, Dhivy, that is pre scored so that you break pieces off easily but of course it's name brand and cost is probably very high.
I'm no doctor but even they don't truly know how you work. You could try it to see if it works for you and always go back to whole tabs if necessary. Keep me posted.

June 19, 2023
A MyParkinsonsTeam Member

Wow. That’s some thing I never would’ve thought of. Do you find a small dose spread over a period of time is as effective? Does it control your PD symptoms as well as the standard dosing? And If you don’t mind me asking, could I ask how you began the small dose? did you just go from standard dosing to small doses when you started in the morning? Also, do you find your taking protein during the day has any effect on the medication‘s effect. Sorry for all the questions, but I’m wondering if this might be a better option than taking larger doses spread out.

June 18, 2023
A MyParkinsonsTeam Member

Anywhere from 7 25/100's to 11 depending on how it goes throughout the day. Doctor wanted me on Rytary but I had 4 to 6 hours of off time and that really sucks. She knows about how many I take and says it's okay.

June 18, 2023
A MyParkinsonsTeam Member

Just curious, How much sinemet would you have taken through out the day when you finish your last dose at the end of the day?

June 17, 2023

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