Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 10-09-2017, 05:57 AM #31
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

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
jeffreyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (10-09-2017)

advertisement
Old 10-09-2017, 10:16 PM #32
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
Default

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.
alreadybutnotyet is offline   Reply With QuoteReply With Quote
Old 10-10-2017, 06:56 PM #33
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

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.
jeffreyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
alreadybutnotyet (10-11-2017), soccertese (10-10-2017)
Old 10-11-2017, 04:26 PM #34
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
Default

Quote:
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.
alreadybutnotyet is offline   Reply With QuoteReply With Quote
Old 10-11-2017, 04:31 PM #35
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
Default App

Quote:
Originally Posted by johnt View Post
I've written a very small app that calculates the LEDs of your drugs and totals them to get your levodopa equivalent daily dose (LEDD). It runs directly from the web page, so there's nothing to install. It can be found on my web-site at:


John
Hi John,

Can you run my med regimen? I'm curious to see what it yields. My computer skills are shot so I need assistance.

Thank you.

y 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.
alreadybutnotyet is offline   Reply With QuoteReply With Quote
Old 10-12-2017, 03:39 PM #36
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

[QUOTE=alreadybutnotyet;1252687]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.[/QUOTEt

taking the 2 halves of a 50/200CR has the same affect as taking the whole pill. if you chewed that pill the affect would approximate (2) 25/100. i see you are already taking a CR at night so you could play around with adding CR, subtracting 25/100 during the day.
i'm not a doctor so do this at your own risk or talk to your doctor, best to test on the weekends. i think a lot of md's don't recommend CR during the day for advanced pd'ers since it can be unpredictable and build up later in the day. like i mentioned before, i'll take 100-150mg of 25/100IR(immediate release) in the morning to get a jump start, an hr later 50mg of IR +50/200CR. This might last me 3hrs, i'll follow with 100mg and repeat the pattern just once or twice, i don't want to take more than 3 50/200's during the day.

just got an RX for 25/250 C/L. This gives me more options, split to get 125mg and 62.5mg when i split the 125. it has only 1 score but splits pretty ok into qtrs, pill is blue, the mylan brand. i've tried the 25/250 an hr after eating some protein (no will power) and it kicked in in an hour. fwiw, it's cost to a pharmacy is not much more than 25/100 and even though there is less carbidopa, if your're taking 1000mg combined IR and CR like i am probably doesn't matter. so even if you paid for the rx out of pocket it would be a cheap reserve.
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
alreadybutnotyet (10-18-2017)
Old 10-18-2017, 05:54 PM #37
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
Default

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.
alreadybutnotyet is offline   Reply With QuoteReply With Quote
Old 10-18-2017, 07:20 PM #38
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
alreadybutnotyet alreadybutnotyet is offline
Junior Member
 
Join Date: Sep 2017
Location: Missouri
Posts: 15
5 yr Member
Default

[QUOTE=soccertese;1252749]
Quote:
Originally Posted by alreadybutnotyet View Post
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.[/QUOTEt

taking the 2 halves of a 50/200CR has the same affect as taking the whole pill. if you chewed that pill the affect would approximate (2) 25/100. i see you are already taking a CR at night so you could play around with adding CR, subtracting 25/100 during the day.
i'm not a doctor so do this at your own risk or talk to your doctor, best to test on the weekends. i think a lot of md's don't recommend CR during the day for advanced pd'ers since it can be unpredictable and build up later in the day. like i mentioned before, i'll take 100-150mg of 25/100IR(immediate release) in the morning to get a jump start, an hr later 50mg of IR +50/200CR. This might last me 3hrs, i'll follow with 100mg and repeat the pattern just once or twice, i don't want to take more than 3 50/200's during the day.

just got an RX for 25/250 C/L. This gives me more options, split to get 125mg and 62.5mg when i split the 125. it has only 1 score but splits pretty ok into qtrs, pill is blue, the mylan brand. i've tried the 25/250 an hr after eating some protein (no will power) and it kicked in in an hour. fwiw, it's cost to a pharmacy is not much more than 25/100 and even though there is less carbidopa, if your're taking 1000mg combined IR and CR like i am probably doesn't matter. so even if you paid for the rx out of pocket it would be a cheap reserve.

PM sent
alreadybutnotyet is offline   Reply With QuoteReply With Quote
Old 10-18-2017, 10:40 PM #39
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

alreadybutnotyet,

It's good to hear that you are finding multi-compartment pill containers to be helpful.

When I started using one, I found that an unexpected benefit was that I more often took the dose as soon as the alarm sounded, rather than putting it off until later. I think this is because taking a dose is much quicker now. That is, to take a dose now, I no longer have to put on my glasses, get out the bottle of pills and the pill cutter, cut a pill into halves (and maybe quarters), and then put away the bottle of pills and the pill cutter. Taking a dose nowadays takes me about one minute!

Jeff
jeffreyn is offline   Reply With QuoteReply With Quote
Old 12-26-2018, 05:01 AM #40
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
Default

I've come across a paper [1], albeit nearly 10 years old, which covers some of the same ground as my minute-to minute levodopa plasma level graphing tool (see earlier posts in this thread). Mikkko et al. report empirical results of plasma levels during the course of the day for people taking 4 or 5 doses of Stalevo (levodopa, carbidopa, entacapone). Both methods show a saw-tooth pattern, related to the wax and wane of each dose.

For instance, compare their graph, Fig 2, top right, with the graph produced by the tool. (Please note that they use a different scaling factor for the y-axis). The data for this is 4 doses of 100mg Stalevo taken 3.5 hours apart.

Stalevo4doses.png

Why is this important? Being able to visualize what is going on is a step towards controlling what is going on.

Reference:

[1] Mikko Kuoppamäki, Kirsi Korpela, Reijo Marttila, Valtteri Kaasinen, Päivi Hartikainen, et
al.. Comparison of pharmacokinetic profile of levodopa throughout the day between levodopa/carbidopa/entacapone and levodopa/carbidopa when administered four or five times daily. European Journal of Clinical Pharmacology, Springer Verlag, 2009, 65 (5), pp.443-455. <10.1007/s00228-
009-0622-y>. <hal-00534945>
https://hal.archives-ouvertes.fr/hal-00534945/document

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
johnt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (12-28-2018)
Reply

Tags
conversion factor, dose, equivalency, levodopa

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
How much levodopa are you on? Jim091866 Parkinson's Disease 28 08-28-2012 02:12 AM
IM levodopa Jim091866 Parkinson's Disease 1 02-13-2012 08:59 PM
For those of you on levodopa caldeerster Parkinson's Disease 8 06-27-2011 10:50 AM
Drug interactions of Coumadin, Comtan, Carbidopa And Levodopa, Carbidopa And Levodopa lou_lou Parkinson's Disease 0 06-23-2011 11:50 PM
Double dose Copaxone more effective than single dose xo++ Multiple Sclerosis 6 10-01-2006 03:25 AM


All times are GMT -5. The time now is 07:34 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.