Knowledge is Power: understanding our me... - Cure Parkinson's

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Knowledge is Power: understanding our medications.

Hikoi profile image
17 Replies

Since having PD I have become just a little obsessed with reading and understanding all I can about it and this is a bit of what I have learned. I hope it is useful to somebody.

I was going to put some of this in a reply post but it is general information. It is not meant to be advice about your treatment but it is about understanding our treatment so hopefully we can feel more in control. I believe it is accurate but welcome corrections or comments.

The pills: Can you split them.?

Some people do this. You can't do it on every type of pill but in doubt your pharmacist will know.

If there isn't a line down the middle you can buy a pill cutter very cheap at pharmacy or $2 shop. This means the halves are equal so you know what dose you are getting and it is consistent.

You can't split long acting meds because the outer coating is what makes it absorb slowly. Ie makes it long acting or extended release. Splitting the med exposes the inner part and in effect makes it a short acting medicine.

all meds have an average absorption time. The Drs etc will talk about the half-life of a drug. This is the time it takes for the amount of it in your body to be reduced by half. This depends on how the body processes and excretes the drug, and can vary from a few hours to a few days. No matter what dosage of a partiular drug you're on or how long you've been taking it for, its half-life is always the same.

Guess what levadopa ( sinemet, madopar etc) half life is 60 - 90 minutes!! Research shows that altogether it lasts up to 3 1/2 hrs. Not long is it. In the beginning you can store a bit so once, twice or three times a day medication regimes work. But later you don't have the same ability to store any. So that's why in general the longer you have had PD the more frequently you need meds. After a few years taking a pill every two to three hours is quite usual.

It is wise to be on as low dose as possible but if the dose is too low then you can have a problem getting to an adequate level for it to be effective. Some people find they need a boost dose in the am to get their level up for the day for example.

If you then have a long gap before the next pill you are likely to dip very low and again the next dose has catch up and can take an age to raise the level of dopamine in the body and it becomes a fluctuating on off type cycle. Smaller doses more frequently is the usual answer. You get the same amount of levadopa over the day but maintain a more consistent level in your system.

So you can see how our medication regimes can become very complicated and personal to us. They are affected by our lifestyle, activity levels and metabolism and much more. If we understand what is happening we can try little changes to get the best possible effect from our drugs.

I find that the more I understand the more actively involved I can be in treatment decisions and so the more control I feel I have over my world. Hope you find that too.

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Hikoi
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johntPM profile image
johntPM

I've written an app that draws graphs of medication levels over time for some common Parkinson's drugs.

parkinsonsmeasurement.org/t...

This shows fluctuating drug levels, using levodopa as a common denominator, during the course of the day.

John

Hikoi profile image
Hikoi in reply tojohntPM

I think this is a great resource John. Are you happy for it to be posted on Facebook pages?

johntPM profile image
johntPM in reply toHikoi

I'm happy for it to be posted anywhere, provided mention is made that it is an "ALPHA TEST VERSION: DO NOT USE FOR CLINICAL PURPOSES". The program is working fine, but I'm finding it difficult to find definitive values in the literature of the pharmacokinetic values of the drugs on which the analysis depends.

John

Thank you Hikoi for posting. You have explained this in a very concise manner and this is very much appreciated.

The taking of the medication is an ongoing challenge as the wearing off is a constant. Some days take longer for the "kick in". It has been recommended to wait one hour before eating and two hours after before taking Sinemet. I find this very difficult to manage. Everyday is different...some good, some not so good.

Here's to an abundance of good days!

Hikoi profile image
Hikoi in reply to

Thankyou puddlejumper.

You know that advice about eating is certainly true but again from my perspective is trial and error. It wasn't an issue at all for my first 4 or 5 years I didn't think about it, but certainly do now.

One thing I have noticed is that if I take sinemet at the same time as I eat a meal it often works ok but if I wait until half an hour or so it may not work so well.

i don't know!

I do know people that have been advised that over time the bowel can be very sluggish and having a snack gets it moving so the pills may work better!

in reply toHikoi

Hikoi, I have taken Sinemet with a meal and it worked just fine. Then I take the Sinemet the same way on another day and it does not work. In fact, I get Dystonia in my feet, which I dread. It is obvious to me that not enough of the Sinemet reached the brain!

One thing for certain, PD is constant in its inconsistency!!

Hikoi profile image
Hikoi in reply to

Yep I so wish I could solve the riddle. We need a device that monitors our dopa levels like a diabetic can I reckon

And then there's that dystonia!

johntPM profile image
johntPM in reply toHikoi

"We need a device that monitors our dopa levels." True. There's a group of us on the Neurotalk, Parkinson's forum, Angela Wensley, Ron Strong and myself, each in our own way looking at this.

My feeling is that as an immediate aim we should use a proxy measure, something that's related to dopa levels, but which is easier to measure. Tap tests do the job, but are invasive in the sense that you've got to stop what you're doing to take the test. Accelerometer systems, based on a smart phone or microcontroller, e.g. Arduino, are non-invasive, but the signal needs processing. Skin conductivity has also been tried. If anyone would like to get involved, please get in touch.

John

Enidah profile image
Enidah

I am finding the info on meds helpful. I seem to be walking a thin line between effectiveness and dyskinesia. I am back to breaking my Sinemet in half, but often when I do that I don't feel I've gotten the full benefit. I have to play it by ear. If I am doing something arduous I take a whole pill. As time goes on this all gets harder. I guess that's why it's called a disease. Ha!

Hikoi profile image
Hikoi in reply toEnidah

I'm where you are enidah though dyskinesia is mild, a few facial grimaces. But I totally understand the feeling of not quite enough meds and also the too much feel.

Every day seems like getting another cryptic crossword puzzle to solve.

Enidah profile image
Enidah in reply toHikoi

Well put!

in reply toEnidah

Parkinson's Inconvenience ?

pushkin profile image
pushkin

Join GreenMef Info and discover the....TRUTH!

in reply topushkin

greenmedinfo.com/disease/pa...

pushkin profile image
pushkin in reply to

Et tu

in reply topushkin

forum.parkinson.org/index.p...

si-simary profile image
si-simary

That is great information, Hikoi. Thank you for sharing to those of us who are new to PD.

Keep it coming as I'm sure many can benefit from your knowledge and understanding of

PD drugs.

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