Parkinson's Disease Tulip


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Old 01-30-2016, 04:00 PM #1
schwad01 schwad01 is offline
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schwad01 schwad01 is offline
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Default need help in the morning

I've been a PD patient for 8 years. I started and remain very asymmetric- left arm-leg symptomatic-r essentially normal. I am left handed. As time progressed I developed "off" periods that eventually forced me into decreasing dosing intervals- I have always been on Stalevo. I tried Rytary- (documented here) but became manic and dystonic (for the first time). I am currently on Stalevo 100-- at 6 am-dosed at 2.5 hr intervals- last dose at 630p-- I take 100 of l/c ER before bed--9-10-pm---I find that the mornings- once great- then ok-are now miserable-- does anyone have any ideas-should I increase the dose of the CR?- should I change to Stalevo? I need to be better when I wake- so I can get to work on time-- any advice would be appreciated-mmorning
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Old 01-30-2016, 08:19 PM #2
made it up made it up is offline
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Quote:
Originally Posted by schwad01 View Post
I've been a PD patient for 8 years. I started and remain very asymmetric- left arm-leg symptomatic-r essentially normal. I am left handed. As time progressed I developed "off" periods that eventually forced me into decreasing dosing intervals- I have always been on Stalevo. I tried Rytary- (documented here) but became manic and dystonic (for the first time). I am currently on Stalevo 100-- at 6 am-dosed at 2.5 hr intervals- last dose at 630p-- I take 100 of l/c ER before bed--9-10-pm---I find that the mornings- once great- then ok-are now miserable-- does anyone have any ideas-should I increase the dose of the CR?- should I change to Stalevo? I need to be better when I wake- so I can get to work on time-- any advice would be appreciated-mmorning
Schwad Hi, Perhaps try increasing your 100mg ER up to 200mg ER levodopa in evenings and/ or an extra of your 100mg ER upon waking if in an off state during your normal sleep times.
For morning dose you're probably a bit low on meds floating around doing their thing to help you come on upon waking so maybe try adding say half as in 50mg of a regular 100mg Sinemet or whatever brand you prefer to your morning regime. It's not a lot and I find sometimes just that extra 50mg can make coming on easier.
Same thing throughout the day if your off is a bit worse than usual or you feel 100mg Stalevo isn't quite doing enough.
Best wishes
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Old 01-31-2016, 04:06 AM #3
johnt johnt is offline
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schwad01,

What do your doctors say about your asymmetry 8 years post diagnosis? Asymmetry is normally taken as a good sign, because it shows that only one side of the brain is diseased. But it must have implications for drug treatments, which affect both sides of your brain. Especially since your total daily dose is not small. (If I understand you right you take 6x100mg Stalevo and 1x100mg C/L ER, giving an LEDD of 870mg.)

As a first step I would measure (tap test) on both your left and right sides and both "on" and "off" to see if you are really "essentially normal" on your right side. If you really are so asymmetric, you don't want to do anything which loses this, so I think you ought to get specialist advice on what medication regimen is best for patients of your type.

What exactly is your diagnosis? You ought to seek your doctor's advice on whether such large and long standing asymmetries may point to vascular Parkinsonism.

John
__________________
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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