Quote:
Originally Posted by johnt
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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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.