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Old 10-08-2017, 10:08 AM #1
soccertese soccertese is offline
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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 #2
alreadybutnotyet alreadybutnotyet is offline
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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 #3
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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 #4
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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 #5
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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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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 10-09-2017, 05:57 AM #6
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Hi alreadybutnotyet,

The posts from johnt and soccertese are quite comprehensive, but I think I've managed to come up with a small contribution as well.

As soccertese said, timers/alarms can help you take your medications at the right time. My advice is to get the timing sorted out first (with timers/alarms), and then see if you still have a problem. If you then think you need to increase your dose (and if your tablets are double scored) you could try 1.25 tablets every 2 hrs (since 1.5 tablets every 2 hrs causes you to get dyskinesia).

I take three quarters of a Madopar 125 tablet 6 times a day. These tablets are double scored, and I have a pill cutter. I also have a 7-compartment pill container that I load up with my 6 doses each evening (ready for the next day) so all my pill cutting gets done in one session. I have 6 alarms set up on a smartphone to control the timing during the day.

Jeff
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Old 10-09-2017, 10:16 PM #7
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Quote:
Originally Posted by johnt View Post
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
Hi John,

I was officially diagnosed in December 2012, although looking back on it, there were signs of a problem 2 or 3 years before then. I expect many folks experienced that as well. My drug regimen hasn't really been a big issue in the past. My 50/200 during the night has worked well. The Azilect doesn't really seem to do much of anything (at least that I can perceive), and I'd like to get off of it if possible. The Amantadine is supposed to help with my dyskinesias but it causes insomnia so I have to be careful. So the main area of concern is with the sinemet 25/100. I go see my doctor in a few weeks and I'm sure we can get something that works better than what I have now. Perhaps it's just the progression of PD and the changes that come with it/

I try really hard to keep on top of my meds. I have 3x5 Index cards that I use to write down when my 2 hour med schedule blocks are, when I actually take them, when to eat and so on. I also set alarms on my cell phone to remind me. That's worked fairly well for me. What happens though is that all too often I get caught up in something I'm working on or involved with, and when the timer goes off, I just reach over and instinctually turn it off and go back to whatever I was working on. Shortly thereafter I realize what I've done and now I don't remember if I took my pill or not (and all that goes along with that). I think a good portion of is just my forgetfulness and failing to keep on top of things.

My dyskinesias range from mild to moderate. Stress and the amount of sleep I get are big drivers for them. It's about the same for my offs as well. My only other serious symptom is some Bradykinesia in my left arm and hand.
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Old 10-10-2017, 06:56 PM #8
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alreadybutnotyet said: "... when the timer goes off, I just reach over and instinctually turn it off and go back to whatever I was working on."

I do this sometimes as well, but in my case (at the present time) the consequences seem to be less severe. You could of course press the snooze button instead of the cancel button.

alreadybutnotyet said: "Shortly thereafter I realize what I've done and now I don't remember if I took my pill or not ..."

A multi-compartment pill container should solve this problem.
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Old 10-18-2017, 05:54 PM #9
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Quote:
Originally Posted by jeffreyn View Post
alreadybutnotyet said: "... when the timer goes off, I just reach over and instinctually turn it off and go back to whatever I was working on."

I do this sometimes as well, but in my case (at the present time) the consequences seem to be less severe. You could of course press the snooze button instead of the cancel button.

alreadybutnotyet said: "Shortly thereafter I realize what I've done and now I don't remember if I took my pill or not ..."

A multi-compartment pill container should solve this problem.
Hi Jeffrey,

I bought several of these pill organizers and they do seem to help. I need to be working on being more focused and aware of what's going on around me.
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Old 10-11-2017, 04:26 PM #10
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Originally Posted by soccertese View Post
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.
So you're saying that half of a 50/200 ER is about 60% of a regular (non-cut) 50/200 ER? Is that the half-life of the pill? What parameter is reduced? Is it the length of time the drug is effective? Sorry for the confusion. My amantadine (1/2 tablet twice a day) makes my short-term memory problems worse.
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