Parkinson's Disease Tulip


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Old 03-10-2019, 06:20 PM #1
eds195 eds195 is offline
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Soccer, thanks for taking the time. I will give the Rytary more of a chance and try it with a snack to delay absorption. I can eat half a cow 10 minutes after I take my usual dose of c/l and mucuna w/out a problem, but pay for it at the other end; sometimes up to 4 hours later after a medium/high protein meal meds still don't work, very frustrating. I try to be ON a bit when it's time for sleep so I can be comfortable enough to fall out, so the Rytary delay should not be a problem and could be a solution if it extends its usefulness.

Eric
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Old 03-11-2019, 09:16 AM #2
soccertese soccertese is offline
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Quote:
Originally Posted by eds195 View Post
Soccer, thanks for taking the time. I will give the Rytary more of a chance and try it with a snack to delay absorption. I can eat half a cow 10 minutes after I take my usual dose of c/l and mucuna w/out a problem, but pay for it at the other end; sometimes up to 4 hours later after a medium/high protein meal meds still don't work, very frustrating. I try to be ON a bit when it's time for sleep so I can be comfortable enough to fall out, so the Rytary delay should not be a problem and could be a solution if it extends its usefulness.

Eric
yep, keep in mind that 100mg of C/L will improve your symptoms somwhat yet probably only 5-10% of that gets into your brain and only part of that C/L gets to where it is needed in the brain since it has to diffuse there vs being manufactured where it is needed. this doesn't matter that much if your're still at the stage where you have what, more than 20% of your dopamine producing cells? my point is that the brain needs very little dopamine but if your're dependent on exogenous dopamine like we are then eating even 10grams of protein will block out most of the l-dopa you take until it is cleared from the blood plus any amino acids similar to l-dopa in the protein that gets into the brain is competing for enzymes in the brain that convert l-dopa to dopamine, blocking the enzymes receptor sites from accepting l-dopa. just speculating on that but controlling my craving for cheese, pizza, yogurt is tiresome. i mentioned this before but if i knowingly eat too much protein i'll boost my next dose from 150 to 250, and if i don't come on in 75min i'll take another 100mg, if that doesn't kick in in 45min i'll take 50mg. i measure my BP before taking another dose since i don't want it to go too low, luckily i seldom get dyskinesias. i tried generic mirapex which isn't affected by food, couldn't tolerate it, saw things that weren't there when i got close to 3mg/day. i could try requip-xl, seems like all the advanced pd'ers from britain who post here are on that, just have to push my mds to write me the RX. i have no good reason not to try rytary other than the cost.

hopefully inhaled l-dopa and the sublingual apomorphine will help out as "rescue" drugs but the cost might be too high.
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Old 03-12-2019, 10:05 AM #3
eds195 eds195 is offline
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I'm similar after dinner when one dose doesn't work I will keep adding smaller amounts in time frames you mention so that I can fall asleep without using up any of the dose I take right when the lights go out. Have eaten a fatty snack (Smart Balance on chips) last 2 nights just before Rytary dose and lights out. First night, 5 1/2 hours and last night 4 1/2 both followed by dose of c/l and mucuna and the nights were manageable, so thanks for the suggestion and Hauser/bioavailabilty links.

I just started the Requip xl 4mg up from 2mg which did nothing I could tell for 6 weeks but only a week in, will report back, hoping for something good out of this. Neuro says should round out my dopamine levels so I don't deplete so fast and crash which really rocked Jan/Feb with anxiety. Now I understand how bad those crashes made me feel and I've broken the vicious cycle of anxiety starting the moment I sense an off period coming, but still makes me shaky and mentally weaker.

Definitely interested in the sublingual Apomorphine, which was delayed end of January by FDA.... Sunovion Receives Complete Response Letter from FDA for Apomorphine Sublingual Film (APL-13277) | Sunovion

Here is a guy who uses the Apomorphine pen in the UK, hat tip to John Morris over at HU. Watch video - FYI - Parkinson'''s Movement | HealthUnlocked

Would be great if a rescue drug could help cut down on some of the crappy off periods you suspect are coming from a meal, first thing in morning or whenever.
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Old 03-12-2019, 07:15 PM #4
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To help answer some of the recent questions posed in this thread, you can use an app that I wrote to draw graphs of levodopa equivalent plasma levels during the day due to different drug regimen. This is based on the pharmacokinetic properties of the drugs used and the idea of levodopa equivalent dose (e.g 100mg of levodopa/carbidopa is "worth" approximately 5mg ropinirole).

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

Unfortunately, I've not been able to deal with Rytary within this framework. But, you can approximate one Rytary pill with four suitably timed and sized L/C IR pills. See,

Approximating the pharmacokinetics of Rytary using IR C-L

You're right the smoothing role played by ropinirole CR (Requip XL) is due to its longer half life.

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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