Parkinson's Disease Tulip


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Old 05-18-2012, 03:46 PM #1
arin arin is offline
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Default A request...

Hi all.

I had a look and couldn't find a thread like this.

To give you the jist.

We have just had my fathers dosage of dopa reduced from a large overdosing of 1500-2000 a day to 1000mg a day.

I would like to ask a few questions of everyone here, as currently he is on a tablet of 62.5 sinemets every hour of the day.

His on periods are about 20% of the day, obviously as noted from my other thread there must be an adjustment period back to baseline.

However I thought I would ask what are others Parkinson's tablets regimes.

How much do you take, and in what tablets, what forms?

How often in the day? Every hour, every two, three? And how much on each?


Would be a much appreciated reply

Thanks
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Old 05-18-2012, 06:58 PM #2
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7 years since diagnosis. I don't have clear cut on and off periods, but I do have better and worse periods.

PD medication:
- rasagilene, 1 mg (LED 100), 0800;
- ropinirole, 16 mg (320), 0800;
- Stalevo 4x75 mg levodopa (400), 0800, 1100, 1400, 1700.
Giving a total daily levodopa equivalent dose of 820 mg.

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 05-19-2012, 05:32 AM #3
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Thank you John..

Any others?
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Old 05-19-2012, 06:10 AM #4
lindylanka lindylanka is offline
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Hi Arin,
I am 9 years from dx and take sinemet 100/25 tablets + entacapone as follows:

On waking (whatever time that might be)
2 x 100/25 sinemet tablet + 1 200 entacapone tablet

After approx. 3.5-4.5 hours I take the same dose again.

My third dose of the day is:
1.5 x 100/25 sinemet tablet + 1 200 entacapone tablet

If I have had a long day I take a half of a 100/25 sinemet before bed.

I am currently thinking about splitting my second and third doses and bringing them closer together, maybe around 3 hours.

I do experience 'wearing off' of medication, which is more noticeable if I am being physically active. If I am absorbed in doing something sedentary I may not notice it until my body 'tells' me.

I have worked very hard to maintain this low dosage, currently an absolute maximum of 600 per day, choosing to go against initial advice to take more if I got 'wearing off'' issues. Instead I lowered slightly and divided doses, as I had been prescribed 200/50 sinemet 3 tid. The addition of entacapone three/four years ago allowed me to lower my intake by 150. Since then I have increased by about half a tablet every 18 months.

Somebody on this forum years ago suggested splitting doses instead of increasing intake of sinemet - on the basis that the tablets contain far more active ingredient than we uptake, and that sinemet has a short half life in the body. It has worked with me, with the proviso that entacapone improved uptake immensely for me. I know this does not happen for everyone.

We all respond to medication in different ways, it is a very problematic thing for doctors and patients. Whereas formerly doctors would increase sinemet intake to much higher levels than I have ever taken (8 per day max. around 3 years into dx) they now prefer to see patients on much lower levels of levodopa, as time and better awareness have revealed some of the problems of long term use.

Some patients do get an increasingly lower level of relief and therefore need to take more. The reasons for this are unclear. It is always a balancing act. This is also why there are many other PD medications that can be used to mitigate some of the problems.
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Old 05-19-2012, 06:22 AM #5
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Hi Lindy,

Thank you very much for the informative post.

One can only do so much reading until it becomes the best option to seek knowledge from so many different people experiencing the same disease.

And that is exactly what I am doing

Thanks John and Lindy
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Old 05-19-2012, 08:19 AM #6
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Arin,
Most of us at some point or another have come to the point that you are at now, and have resorted to asking fellow PwP, I hope some more will be along shortly, the more the better. Our collective views help form a better picture of problems and solutions. To many of us this forum has been a lifeline.

Best wishes,
Lindy
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Old 05-19-2012, 12:02 PM #7
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Quote:
Originally Posted by lindylanka View Post
Arin,
Most of us at some point or another have come to the point that you are at now, and have resorted to asking fellow PwP, I hope some more will be along shortly, the more the better. Our collective views help form a better picture of problems and solutions. To many of us this forum has been a lifeline.

Best wishes,
Lindy

Lindy,

When you say 200mg entacapone , do you mean a stalevo? Or entacapone alone?
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Old 05-20-2012, 08:26 AM #8
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303 views and only two people reply?

Im willing to bet atleast 75% of the views are PwP so why has nobody else replied?

This is to help all people!!
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Old 05-20-2012, 08:56 AM #9
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Quote:
Originally Posted by arin View Post
Hi all.

I had a look and couldn't find a thread like this.

To give you the jist.

We have just had my fathers dosage of dopa reduced from a large overdosing of 1500-2000 a day to 1000mg a day.

I would like to ask a few questions of everyone here, as currently he is on a tablet of 62.5 sinemets every hour of the day.

His on periods are about 20% of the day, obviously as noted from my other thread there must be an adjustment period back to baseline.

However I thought I would ask what are others Parkinson's tablets regimes.

How much do you take, and in what tablets, what forms?

How often in the day? Every hour, every two, three? And how much on each?


Would be a much appreciated reply

Thanks

when you take drugs they have a half life. so when you take multiple doses throughout the day or even the next day your starting the next dose with some in your system already. so your peak with the 2nd dose is higher that the first and so on. thats why drug manufatures say to adjust the dosage slowly when you start over a period of weeks. simplistically if you take the sinemet and you feel worse as the day goes on and your taking multiple doses you could be overmedicated. likewise if you feel better as the day goes on you might be ok or slightly undermedicated.
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Old 05-20-2012, 09:55 AM #10
madamlash madamlash is offline
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Default regime

Diagnosed 10 years ago. Presently taking 1 1/2 tablets of Carbidopa/Levodopa 25/100 every 2 to 2.5 hours. I take this from the time I wake, around 5am to bedtime around midnight. I often wake up in the night and have to take one more dose. Additionally, I take a Mirapex ER 1.5 twice a day in the morning and evening. My off times come on me very quickly and my on times very slowly.
Things that help... I have found that drinking aloe vera seems to help... there's a lot of theories why but, who knows for sure. I have also found that when I have a particularly stressful day ahead, I self administer a vitamin B12 shot.

Quote:
Originally Posted by arin View Post
Hi all.

I had a look and couldn't find a thread like this.

To give you the jist.

We have just had my fathers dosage of dopa reduced from a large overdosing of 1500-2000 a day to 1000mg a day.

I would like to ask a few questions of everyone here, as currently he is on a tablet of 62.5 sinemets every hour of the day.

His on periods are about 20% of the day, obviously as noted from my other thread there must be an adjustment period back to baseline.

However I thought I would ask what are others Parkinson's tablets regimes.

How much do you take, and in what tablets, what forms?

How often in the day? Every hour, every two, three? And how much on each?


Would be a much appreciated reply

Thanks
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