Parkinson's Disease Tulip


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Old 06-08-2022, 04:51 PM #1
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Default Sinemet dose ?

I'm now in my 26th year with PD. Onset of symptoms was 1996 at age 33. Things are not good, as I'm sure you can imagine. I'm supposed to take 3 Sinemet (25/100mg) four times/day. This dose used to last 5-6 hrs., which worked out well enough for several years. These days, however, I start to wear-off in about 3 hrs. So, now I'm faced with deciding whether or not to go ahead and take "more" than I am prescribed. You see, a VA doc writes my prescriptions, and he recently sent me a large "extra" bottle of Sinemet (Qty: 180). I'm assuming he sent them because I told him about the 2-3 hrs of On-time I regularly get from the 3-tab dose.
Obviously, the longer we take the sinemet, the less effective it becomes. So, I was wondering if anyone here has past the point I find myself in currently? Anyone here taking more than 3 tabs (25/100mg) four times daily?
...and, what am I (are We) supposed to do if/when the sinemet fails completely?
Thanks very much.
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Old 06-11-2022, 04:34 AM #2
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The main constraint in increasing the C/L dose is whether it leads to dyskinesia. You don't mention this in your post, so there's a good chance that it is not a problem, and so you can increase the dose. You should aim to have the flutuations between the doses as low as possible.

You should discuss with your doctor a regimen of five doses per day, each of 300 mg, and three hours apart. This gives you more spread over the day. You should titrate up, starting with the first dose of the day. As the concentration rises through the day, as the left overs from one dose count for the next, you may find that the later doses are not needed or can at least be reduced

Rasagiline is also worth considering. It gives, in effect, the equivalent of 100 mg C/L, but in a spread out way, so it is useful for laying the foundations of your daily regimen.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 06-14-2022, 06:31 PM #3
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Thanks, John. I couldn't tolerate the Rasagiline. It seems like there are a couple of new meds out. I'll have to ask about them.
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Old 08-13-2022, 03:26 AM #4
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Hi ToyL
John gives good advice. I would add that there is no evidence that carb/lev stops working. Our ability to store and use it diminishes which is why you are finding the dose doesn't last as long. The answer usually given is to take less more frequently. Where you diagnosed in 1996 or was that when you first noted symptoms? You say you can't tolerate rasagiline. What was your reaction to it? You may find you can take it now.
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