Parkinson's Disease Tulip


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Old 06-15-2017, 01:16 PM #21
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Default Looking For Your By-Minute Chart Given This Input

John, I am unable to come to a successful conclusion when using your by-minute app to find my Levodopa levels throughout my typical day.

Here are two scenarios I'd like to explore:

1. Initial Dosing of Parkinson's Meds

(3) capsules of Rytary ER @ 48.75mg Carbi, 195mg Levo
Total 146.5mg Carbi, 585mg Levo

The dose above is taken daily at 0600, 1030, 1500, 1930

(1) tablet Rasagaline 1mg at 0600 daily

(1) tablet MiraPex ER .75mg at 2230


2. Final Dosing After Removing Rasagaline and Mirapex

(3) capsules of Rytary ER @ 48.75mg Carbi, 195mg Levo
Total 146.5mg Carbi, 585mg Levo

The dose above is taken daily at 0600, 1030, 1500, 1930

Can you give me a reasonable result with your knowledge of how your app is set up??

Thanks - you brought great value to this discussion!

Brian
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Old 06-16-2017, 05:24 AM #22
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Brian,

Thank you for your interest in my levodopa equivalent pharmacokinetics graphing app.

As you've found, the tool is limited in the types of drug that it can cope with.

Post 18 in this thread gives a work-around for Mirapex. At its least accurate, you can approximate 1mg of Mirapex ER with 5mg of Requip XL.

Regarding Rytary, I show in a recent thread how to approximate one dose of Rytary with 4 doses of levodopa/carbidopa. See:

Approximating the pharmacokinetics of Rytary using IR C-L

So, you will need to fill in 18 lines, four for each of your four Rytary doses, plus one each for your Mirapex and rasagiline doses.

I've increased the number of doses that the program can deal with per day to 20.

John
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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 10-05-2017, 05:30 AM #23
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I've added some new features to my app which draws a graph of the impact of your drug regimen on your levodopa levels:
- More drugs (but still not Rytary).
- An "on"/ "off" threshold estimator.
- A dyskinesia threshold estimator.
- Steady state as well as single dose solutions.

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

See Post 13 in this thread for screen shots.

Please remember that this app is just a model based on inexact pharmacokinetic (what the body does to the drug) data, when what we really want to know is the pharmacodynamic (what the drug does to the body) impact of our regimen. But, it does help allow you to discuss your options with your doctors.

I believe that most of us can get more out of existing drugs than we do now if we and our doctors take the time to optimize our personal drug regimen.

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 10-06-2017, 09:24 AM #24
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Default hand held device for mea=asuring proprioception

Quote:
Originally Posted by johnt View Post
I've added some new features to my app which draws a graph of the impact of your drug regimen on your levodopa levels:
- More drugs (but still not Rytary).
- An "on"/ "off" threshold estimator.
- A dyskinesia threshold estimator.
- Steady state as well as single dose solutions.

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

See Post 13 in this thread for screen shots.

Please remember that this app is just a model based on inexact pharmacokinetic (what the body does to the drug) data, when what we really want to know is the pharmacodynamic (what the drug does to the body) impact of our regimen. But, it does help allow you to discuss your options with your doctors.

I believe that most of us can get more out of existing drugs than we do now if we and our doctors take the time to optimize our personal drug regimen.

John

Hello John,

Back in 1994 my chiropractor had me squeeze this hand held device that must have measured some subtle electric conductance. Before this he had thought that the tremor in my thumb and the pain in my elbow were simply essential tremor but when I saw that concerned look on his face and his immediate recommendation to see a neuro the gravity of my situation became ever more clear (Initially I thought my grip was pretty strong but thats' not what it was measuring). At the time my sx were subtle which is why I'm wondering if this device might also be useful for the applications you are suggesting for tweaking med dosages....A Good Parkinson’s Muscle-decline Measure Is Hand-grip Test, Study Says
Also, after reading some of your posts i am more carefully observing any sensation of tremor and stiffness ...breathing ease and anxiety as an indicator of when to take next dose. In the mornings I can take less but more frequently and more but less frequently towards the evening.

Kind Regards,
MD
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Last edited by moondaughter; 10-06-2017 at 11:49 PM.
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Old 10-07-2017, 09:16 PM #25
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Default Sinemet 25-100 combinations - too much or not enough, can't tell

Hello folks. Sorry for jumping in but I'm have a problem with my Sinemet dosing.

My current med list:


Azilect 1 mg tab. Take 1 tab in every morning at wake-up.

Amantadine, 100 mg tablet. Take 1/2 tab at 5:30 AM and 1/2 tab at 11:30 AM.

Sinemet 25-100 tab. Take 1 tab at 5:30 AM (wake-up) and 1 tab at 7:30 AM, 9:30 AM, 11:30 AM, 1:30 PM, 3:30 PM, 5:30 PM, 7:30 PM, 8:30PM and 9:30PM (bed time).

Sinemet ER 50-200 tablet (during the night). Take one tab at 9:00PM (bed time) and one tab at 1:30 AM.

Now here's the problem. I'm on a really tight dosage regimen during the day with the Sinemet 25-100. Taking a pill every two hours is a real challenge. I'm constantly missing timing of dosage and I end up on a 30-40 minute "off" or bouncing off the ceiling with over medicating. I don't know if I'm taking too much or not enough. The 25-100s are beginning to not offer relief of symptoms and if I take 1.5 tabs per 2 hours, I start to get overmedicated and then dyskinesia starts to cause problems. Any suggestions? Is 2 sinemet tabs every 4 hours the same as 1 tab every 2 hours. BTW, I did try Rytary and didn't work for me (side effects). Thank you.
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Old 10-08-2017, 10:08 AM #26
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Quote:
Originally Posted by alreadybutnotyet View Post
Hello folks. Sorry for jumping in but I'm have a problem with my Sinemet dosing.

My current med list:


Azilect 1 mg tab. Take 1 tab in every morning at wake-up.

Amantadine, 100 mg tablet. Take 1/2 tab at 5:30 AM and 1/2 tab at 11:30 AM.

Sinemet 25-100 tab. Take 1 tab at 5:30 AM (wake-up) and 1 tab at 7:30 AM, 9:30 AM, 11:30 AM, 1:30 PM, 3:30 PM, 5:30 PM, 7:30 PM, 8:30PM and 9:30PM (bed time).

Sinemet ER 50-200 tablet (during the night). Take one tab at 9:00PM (bed time) and one tab at 1:30 AM.

Now here's the problem. I'm on a really tight dosage regimen during the day with the Sinemet 25-100. Taking a pill every two hours is a real challenge. I'm constantly missing timing of dosage and I end up on a 30-40 minute "off" or bouncing off the ceiling with over medicating. I don't know if I'm taking too much or not enough. The 25-100s are beginning to not offer relief of symptoms and if I take 1.5 tabs per 2 hours, I start to get overmedicated and then dyskinesia starts to cause problems. Any suggestions? Is 2 sinemet tabs every 4 hours the same as 1 tab every 2 hours. BTW, I did try Rytary and didn't work for me (side effects). Thank you.
taking 2 sinemet every 4 hrs probably won't help you and sounds like you'll get dyskinesia.
you need a constant concentration of C/L in your system and that happens with regular C/L by taking a smaller dose more often or adding an agonist and/or a drug such as azilect or entacapone which increases the half-life of l-dopa.

i imagine you have tried 50/200CR extended release C/L. You can take 1.5 200CR which would be 300mg L-D0PA but with reduced bioavailability compared to regular C/L you might not get dyskinesias and might get 2.5-3hrs. if you add some fat it will slow gastric emptying which is what you want to do with CR. a cracker with margarine, or 1/2 cup of cooked oatmeal with margarine, a fish oil capsule. it should kick in in about 90minutes. i try not to take 2 CR doses in a row since it can buildup in your stomach and you get too much l-dopa so my pattern is 100mg C/L, wait 60minutes then take 50mg C/L + 50/200CR. wait 2.5 hrs, then repeat the pattern. i take the 50mg since it takes 90min for the CR to kick in and the 50mg will take 45min to kick in, just about the time the 100mg starts to wear off. this isn't a whole lot better than your drug regime, my point here is it might be worth experimenting with CR. I also take .50-.75mg mirapex during the day, .375 at night +200CR, i think the small amount of mirapex makes my OFF time less severe. eating protein of course negates the l-dopa so i either eat and suffer the inevitable off or if i have the will power eat most of my protein in the evening.

i also use a TIMEX EXPEDITION WATCH which has a repeat count down timer which i set to beep every hr, a stop watch which i set everytime i take a dose so i know when i took the last dose, and 3 timers so i can set 3 doseage times. with those functions i can be sure an alarm goes off when i should take the next dose, whether i actually take it is another thing.
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Old 10-08-2017, 07:14 PM #27
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Originally Posted by soccertese View Post
taking 2 sinemet every 4 hrs probably won't help you and sounds like you'll get dyskinesia.
you need a constant concentration of C/L in your system and that happens with regular C/L by taking a smaller dose more often or adding an agonist and/or a drug such as azilect or entacapone which increases the half-life of l-dopa.

i imagine you have tried 50/200CR extended release C/L. You can take 1.5 200CR which would be 300mg L-D0PA but with reduced bioavailability compared to regular C/L you might not get dyskinesias and might get 2.5-3hrs. if you add some fat it will slow gastric emptying which is what you want to do with CR. a cracker with margarine, or 1/2 cup of cooked oatmeal with margarine, a fish oil capsule. it should kick in in about 90minutes. i try not to take 2 CR doses in a row since it can buildup in your stomach and you get too much l-dopa so my pattern is 100mg C/L, wait 60minutes then take 50mg C/L + 50/200CR. wait 2.5 hrs, then repeat the pattern. i take the 50mg since it takes 90min for the CR to kick in and the 50mg will take 45min to kick in, just about the time the 100mg starts to wear off. this isn't a whole lot better than your drug regime, my point here is it might be worth experimenting with CR. I also take .50-.75mg mirapex during the day, .375 at night +200CR, i think the small amount of mirapex makes my OFF time less severe. eating protein of course negates the l-dopa so i either eat and suffer the inevitable off or if i have the will power eat most of my protein in the evening.

i also use a TIMEX EXPEDITION WATCH which has a repeat count down timer which i set to beep every hr, a stop watch which i set everytime i take a dose so i know when i took the last dose, and 3 timers so i can set 3 doseage times. with those functions i can be sure an alarm goes off when i should take the next dose, whether i actually take it is another thing.

Thanks for the info soccertese. On the 50/200 ER pill, it's scored to allow easier splitting of the pill. If I cut a 50/200 ER in half, then what then do I have? It seems to me that cutting a ER in half will eliminate the ER function. Does that make any sense?

Ed
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Old 10-08-2017, 08:07 PM #28
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Quote:
Originally Posted by alreadybutnotyet View Post
Thanks for the info soccertese. On the 50/200 ER pill, it's scored to allow easier splitting of the pill. If I cut a 50/200 ER in half, then what then do I have? It seems to me that cutting a ER in half will eliminate the ER function. Does that make any sense?

Ed
no, it doesn't negate the ER function, if it did the tablet wouldn't be scored, the package insert states it can be halved but not quartered. if you chew a ER then it approximates 200mg of LDOPA and 50mg of carbidopa. the C/L is mixed up in a matrix of starches, cellulose, maybe wax, so the matrix is maintained when split.

with ER, because it stays in your stomach longer, more of the l-dopa is broken down so it is estimated to be 60-80% bioavailable when compared to regular l-dopa.. i use the 60% number when calculating the total l-dopa i take/day, so a whole CR=120mg regular l-dopa.
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Old 10-08-2017, 08:09 PM #29
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Quote:
Originally Posted by alreadybutnotyet View Post
Thanks for the info soccertese. On the 50/200 ER pill, it's scored to allow easier splitting of the pill. If I cut a 50/200 ER in half, then what then do I have? It seems to me that cutting a ER in half will eliminate the ER function. Does that make any sense?

Ed
no, it doesn't negate the ER function, if it did the tablet wouldn't be scored, the package insert states it can be halved but not quartered. if you chew a ER then it approximates 200mg of LDOPA and 50mg of carbidopa. the C/L is mixed up in a matrix of starches, cellulose, maybe wax, so the matrix is maintained when split.

with ER, because it stays in your stomach longer, more of the l-dopa is broken down so it is estimated to be 60-80% bioavailable when compared to regular l-dopa.. i use the 60% number when calculating the total l-dopa i take/day, so a whole CR=120mg regular l-dopa.

btw, i prefer the mylan brand which i guess isn't available due to hurricane damage in puerto rico.
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Old 10-08-2017, 11:05 PM #30
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alreadybutnotyet,

Welcome to the forum.

How long is it since you were diagnosed? And, how long is it since you've been having problems with your drug regimen?

In the ideal world you should discuss drug regimen issues with your doctor. But, in case he/she is unavailable to give timely advice, I raise the following points. But, please note that I am not a doctor.

200mg levodopa every 4 hours is not the same as 100mg every 2 hours. If you run the app, you will see in the output graph that the smaller, more frequent dose gives two lower peaks and its combined effect lasts longer.

As the disease progresses the gap between the "on"/"off" threshold and the dyskinesia threshold becomes smaller. Therefore, it becomes harder to go above the first threshold, while staying below the second threshold.

It would help if you kept a diary showing the times of your "on"/"off" transitions and your dyskinesia transition. It may be possible to relate those results back to your doses and also your diet.

You may be at a stage where you have to choose between being "off" and being dyskinetic.

How bad are your "offs"? For me, 12 years post diagnosis, they are not severe: my typing is much slower, but I can still walk well.

How bad is your dyskinesia? For me, I have none.

You imply in your post that you have compliance issues. Would these be worse if you had irregular doses both in size and time?

Do you have any other symptoms, such as dystonia, hypotension, falls. For me, I'm beginning to pick up troublesome leg cramps.

The process to follow is then one of two dimensional titration (both dose size and dose timing).

I would start by changing a single dose of just one of the IR tablets.

John
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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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