Parkinson's Disease Tulip


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Old 06-24-2015, 07:02 PM #1
ksweeney ksweeney is offline
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Default Rytary: 9 weeks in. Who is still taking?

This week makes my 9th week on Rytary. Took 4 weeks to get some complications worked out: Not Sleeping, increase in restless leg, left foot dystonia pain. Working with my MDS, he upped my dose from 3 95Mg caps 3 times a day to 4 95's. Been on that regiment for a month. Much improved, sleep better, on times lasting 6 to 7 hrs and improved dystonic symptoms. Appears that it takes longer to kick in. I hear patients having big time issues if taken to close to protein intake. Any one else having success?
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Old 06-24-2015, 11:11 PM #2
soccertese soccertese is offline
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YOU get consistant 6-7hrs of ON time with no OFFS? Are you taking only RYTARY?
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Old 06-25-2015, 09:18 AM #3
ksweeney ksweeney is offline
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Quote:
Originally Posted by soccertese View Post
YOU get consistant 6-7hrs of ON time with no OFFS? Are you taking only RYTARY?
Yes, i am getting easily 6 hrs of one, off periods are minimal to me, but surly have read here and other sites, where our PD counterparts are experiencing much worse off times. I also take Azilect, have been since diagnosis about 4 years ago.
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Old 06-25-2015, 09:43 AM #4
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Quote:
Originally Posted by ksweeney View Post
Yes, i am getting easily 6 hrs of one, off periods are minimal to me, but surly have read here and other sites, where our PD counterparts are experiencing much worse off times. I also take Azilect, have been since diagnosis about 4 years ago.
It would be helpful if you could describe what you eat in a typical day and what times you eat and how you space out your rytary in relation to your meals.
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Old 06-25-2015, 10:03 AM #5
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Quote:
Originally Posted by soccertese View Post
YOU get consistant 6-7hrs of ON time with no OFFS? Are you taking only RYTARY?
it would also be helpful if you would define "OFF", for me OFF is basically turning into a mumbling tin man, freezing, shuffling, no energy so lay in bed or sit in a chair until ON.
i'm making a big deal about this because when i was 4 years into my diagnosis i had no major "OFF" times on 3-4 sinemet/day. RYTARY is a major expense for some people who are desperate for a better solution so this isn't a trivial discussion imho. if you went from 3-4 sinemet a day to RYTARY that is quite different from going from 10+/day with many OFF times.

what was your sinemet strength and dosing if i may ask before RYTARY? Did you try sinemet cr?
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Old 06-25-2015, 01:48 PM #6
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Quote:
Originally Posted by soccertese View Post
it would also be helpful if you would define "OFF", for me OFF is basically turning into a mumbling tin man, freezing, shuffling, no energy so lay in bed or sit in a chair until ON.
i'm making a big deal about this because when i was 4 years into my diagnosis i had no major "OFF" times on 3-4 sinemet/day. RYTARY is a major expense for some people who are desperate for a better solution so this isn't a trivial discussion imho. if you went from 3-4 sinemet a day to RYTARY that is quite different from going from 10+/day with many OFF times.

what was your sinemet strength and dosing if i may ask before RYTARY? Did you try sinemet cr?
Off equals increased resting tremor, less manageable foot dystonia sensitivity, increase in Bradykinesia dexterity. I am in the state of progression you describe, less impact when off, compared to your description. Cost is a big issue, i am trying to afford it simply because i feel better and its keeping my dystonia in a good manageable place. Sinemet, was taking 175Mg 4x per day and a CR at bedtime.
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"Thanks for this!" says:
eds195 (06-25-2015), soccertese (06-25-2015)
Old 06-25-2015, 08:33 PM #7
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Default So Helpful

to have this feedback on Rytary. My husband has been on for approximately four months now and it is still a learning process...tweaking here and there...so desperate for it to work.
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Old 06-27-2015, 11:37 AM #8
Dan Murphy Dan Murphy is offline
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Default Rytary update 10 weeks

I am on Rytary ER 48.75 MG-195 MG CAP. I take 9 a day. 3 @ 7AM ,11AM and 3PM. It kicks in at about 7:30AM and lasts until about 7PM. I supplement the 3 dosages with 1 25-100 Sinemet at 5:30AM and if I stay up past 7:30 PM I take 1 Sinemet every 1 and 1/2 hours. The co-pay is $40 per month.
Overall it is better than remembering to take Sinemet every 1 and 1/2 hours. It is very sensitive to a lot of foods and should be taken at least an hour before or after food. Often about 10% of the time it doesn't kick in fully. I believe I have more naseua with it. It is no wonder drug and a little better than Sinemet.
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Old 06-28-2015, 07:30 PM #9
larryst5 larryst5 is offline
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Default Nausea/Vomiting with Rytary

I am new to this forum. So please excuse me if I make some mistakes. I have had PD for 13 years. I am taking about 10 Sinemet (carbidopa levodopa 25/100) per day. My neurologist switched me to Rytary at 245 MG times 3 TID (Total nine, 245 mg tabs per day). The 1st two days were okay. I thought this is great. Then I started getting sick (vomiting) at night after my evening dose at 6 PM. My doc lowered the dose to 195 mg 3 caps taken TID, and added carbadopa (lodosen) to prevent nausea.. The same thing happened to me. Got sick and vomiting, but at night only.

I remember when I started Sinemet I had a similar problem with nausea, but the doses were so low then, that I eventually got over it.

I'm back on Sinemet that now. Any advice on the nausea and vomiting?

Thank you very much for letting me be part of this form.
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Old 06-29-2015, 08:04 AM #10
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larryst5,

Welcome to the forum.

Rytary has the same components as Sinemet, levodopa and cabidopa, but it is packaged differently.

So, I think the most likely cause of your nausea is the speed at which extra levodopa was introduced. You went from 1000mg per day of levodopa in the Sinemet to 2245mg levodopa per day in the Rotary.

See FDA prescribing information for details of how to introduce Rytary.

http://www.accessdata.fda.gov/drugsa...312s000lbl.pdf

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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