What to do when things go wrong with PD medications?

[johntPM]

For many PwP their quality of life rests on the efficacy of their drug regimen. Even with doses that are fixed from day to day, PwP may experience symptoms that vary from one day to the next. Here, I assume that the regimen is working for most of the time. Rather, I would like suggestions of what to do when things go wrong, for instance when:

1. You have definitely forgotten to take a dose.

2. You are unsure whether you have forgotten a dose.

3. You took your last dose at the normal time, but a hour later it hasn't given you an "on".

4. Your "on" has ended early, sometime before your next dose is due to be taken.

5. You have inadvertently taken one dose too many.

6. You may have inadvertently taken one dose too many.

7. You want to perform at your best, but you are going "off".

I dynamic dose. Using this method I vary the time I take my doses, subject to the following constraints: I never exceed my daily dose by 1 pill; or get more than 1 dose ahead of where I should be at that time; or get more than 1 dose behind where I would expect to be at that time; or take a dose less than 30 minutes after taking the previous one. I try to read the signs and symptoms of my body and I dose when I feel that an "off" will start in about 30 minutes, giving enough time for a dose taken now to start to take effect before the "off".

But, I really want to hear how "classical" dosers, people who keep to a firm timetable, deal with these issues.

John

[RedJY5]

I’m finding little or no relief from levadopa. I am currently reducing the amount I take with the support of PD nurse. No change either way. PD nurse suggesting a different medicine.

[Buckholt]

Perhaps unusually and because my condition it not yet too bad, I tolerate off periods to keep my dosing regime to a minimum. I am probably under medicated but my instinct is to go this way. Partly because I hope this may help avoid any long time use side effects, but also for psychological reasons, in that I taking less now means I have space to increase in the future and haven’t yet spent all my ammunition.

So I have active periods of the day when medicated and physically busy, and then inactive periods when I sit, eat, read, go online etc. I suppose I do vary my dose timings a little to suit social engagements, but mostly stick to normal timings and plan around those.

I have experimented a bit with taking twice as many half size doses to try and maintain a therapeutic level, but it is tricky to remember and eating can ruin the effect.

As far as taking tablets goes, the best way to avoid mistakes is to preload 7 day pill boxes. That way you can see what has been used as you go along.

[Smittybear7 in reply to Buckholt]

How do you regulate your time between eating and medications? I'm taking 1( 25-100) c/l every 8 hours I started having involuntary movements when the neurologist added an extra 1/2 pill in the am. I've cut the extra half pill but still have the involuntary movements. Like you I'm trying to take the least amount of medication but don't know how to adjust. Your thoughts. Thanks for your help.

[Buckholt]

My dosing interval is currently 4 hours and I try and take on an empty stomach as possible This means I eat only after a dose kicks in and is working Any food seems to interfere with my Levodopa . Sorry to hear about the involuntary movements. I haven’t had these and so not really able to comment but people say to avoid medication spikes and have smooth pattern.

[laglag]

My routine is similar to yours.,.,

1. I wait about 15 minutes and try to tell if I'm getting better or worse and if I can tell I'm worse, then I take a 1/2 or a whole depending on how feel. Usually my pill box gives me an idea. I've gone down from 8 to 7 and now I'm down to 5 - 5 1/2.

2. I don't miss very many but I would take one and then extend taking your next dose by 1/2 hr or an hour.

3. Íf it hasn't worked in an hour I would wait another 1/2 hour and then take a 1/2 pill to try to kick it in until your next dose. If that happens a lot, talk to your neurologist. Sometimes it helps for me to eat a small non-protein snack about 15 - 30.minutes after I take my pill. Like crackers or rice cakes.

4. Take 1/2 pill. Talk to your neuro about this to make sure they agree and make sure you have enough pills in your pills to do that.

5.. lf you take one dose too many don't worry about it. Again, make sure you have enough in your prescription to last you,

6. Question 5 was duplicated

7. If it's not too early I'll take an early dose.

Debbie 🥊

[johntPM in reply to laglag]

Thank you. That's just what I wanted to see. Except Q6 is not a duplicate of Q5. Q6 adds complexity to the situation, e.g. you may have forgotten for sure whether or not you took your dose.

[laglag in reply to johntPM]

I reread those 2 questions 3 times and still didn't see that "may". 🙃

[johntPM]

In context, I think this applies to C/L (Sinemet). The advice from Parkinson's UK is:

"If you forget to take your dose, take it as soon as you remember and then adjust the time of your next dose. For example, if you normally take doses at 8am, 12pm, 4pm and 8pm and you forget your midday dose until 2pm, take it then and adjust your next doses to 6pm and 10pm."

parkinsons.org.uk/informati...

This article also gives advice on other sorts of drug.

[johntPM]

This was meant to be a graph showing the estimated levodopa concentration over the day using the Parkinson's UK method for dealing with a missed dose. ( Unfortunately, HealthUnlocked chopped off the sides of the graph. Has anyone else had this problem?) The model used to estimate the pharmacokinetics can be found at:

parkinsonsmeasurement.org/t...

The first dose at 0800 is clearly visible. The forgotten dose at 1200 is replaced by one at 1400. The black line is the total of the doses. A half-life model is used, so a part of the concentration at any time comes from earlier doses.

Levodopa concentration.

[johntPM in reply to johntPM]

Re, only a part of the graph being shown, you can see the whole graph by clicking on the magnifying glass symbol!