HI. Diagnosed 13 years ago, I’ve progressed slowly. I have kept active, attended to exercise, diet, used sinemet not agonists (because the latter didn’t seem to work). However, now sinemet ‘offs’ are too strong and frequent to deal with easily. I’ve been taking Sinemet 25-100 tablets for about 10 years now. In the last few months, I’m up to 2 tabs every 2 to 2.5 hours. Even at night. So that is about 24 pills a day. This is not manageable anymore. When a pill wears off, I feel instantly depressed and anxious. It’s terrible.
So, my neuro and I are experimenting with Rytary. It’s expensive and not covered by insurance (over $600 a bottle!) It does seem to last much longer (2 or 3 capsules last about 5 hours). But between doses it’s hell again as usual (depression/anxiety). I’m tossing in a 25-100 here and there to help smooth it out. We tried 3 caps 3 times a day but I was dancing about with too much dyskinesia on that dosage.
Anyone have experience to share?
Thanks,
Bob
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bcowart
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I was diagnosed about 15 years ago, and have also progressed slowly. I’m on one 245 Rytary three times a day now after ten years of Sinemet every four hours. I started getting dyskinesia about two years ago and have been on amantadine for about a year, one 100mg twice a day which has helped a lot. I also started using a CBD oil cartridge for when I feel anxious in between doses, which also helps. I was supplementing with a bit of sinemet here and there as well, but then get too much dyskinesia. Perhaps the amantadine would help and perhaps take the Rytary every four hours?
When you were on Sinemet you were on a relatively large dose, 2400 mg levodopa/day. Moreover, since you were on Sinemet 25-100 you were on an even larger relative dose of 600 mg carbidopa/day.
Brod et al. write:
"Recommended doses of carbidopa are 75–200 mg/day. Higher doses could inhibit brain aromatic amino acid decarboxylase and reduce clinical effects."
"Doses of 450 mg/day of carbidopa did not reduce the responses to levodopa infusion, extending the safe range of carbidopa to 450 mg/day."
When you made the move to Rytary were the dose recommendations followed to take in account the lower bioavailability of the extended release components of Rytary. Put simply, 100 mg of Sinemet has a higher effect than 100 mg of Rytary.
The active ingredients of Sinemet are levodopa and carbidopa. It is the same with Rytary. The difference, is that Sinemet is all immediate release, whereas Rytary has three types of bead, one immediate release and two extended release. Rytary has the advantage that it smooths out levodopa plasma levels, but in my opinion in your case, given the high number of doses of Sinemet that you were taking, you would have had similar, smoothed out plasma levels anyway.
Hi bcowert:
I think johntpm's question about Rytary is important: "When you made the move to Rytary were the dose recommendations followed to take in account the lower bioavailability of the extended release components of Rytary. ".
Further, I think you can improve Rytary by taking it with Entacopone. Note Entacapone is not expensive.
But if you find you can't afford Rytary, some non-Rytary things that you can try:
1. Use a combination of c/l IR and c/l CR.
2. Add Entacapone.
3. Limit most of your protein intake to your dinner meal.
Warning: Be careful of "dose stacking". This refers to taking a new dose while part of the old dose(s) are is still in your blood.
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