PD meds daily schedule: Practically every... - Cure Parkinson's

Cure Parkinson's

21,927 members23,450 posts

PD meds daily schedule

slapdasch4 profile image
11 Replies

Practically every neurologist I've encountered is pretty firm on the point that meds should be taken on the same daily schedule at the same dosages.

This recommendation is something I haven't always adhered to and I think I've had some decent results in not getting with the program. When I was still working, I often had classes to teach between 9am and noon. When PD symptoms begin to worsen, instead of accepting the neuro's advice to increase dosages, I began front loading meds so that I would be at my best when I had to perform in front of groups. True, I slowed down later but not so much that I couldn't deal with what I considered less stressful activities like faculty meetings and office hours.

In short, at least for me, I don't see a lot of harm in doing some experimentation with dosages and timing. This is an example of not blindly accepting what the doc says and being a bit of an advocate for one's self.

11 Replies
johntPM profile image
johntPM

I've never understood the idea that Parkinson's drugs should be taken to a strict timetable - except, possibly for ease of compliance. Doing this, seems to me like adding 10lt of petrol to a car every day, at the same time, regardless of when and how far you travel.

Forecasting your needs seems entirely reasonable.

I have for many years used "dynamic dosing". When my body indicates that it will soon need more dopamine, for instance an increase in tremor, I will take a dose of levodopa, hoping that it will come into play before I go "off". I almost never take 1 more pill than planned. Instead, I'm usually at least one behind.

It helps if you have a working knowlege of the pharmacokinetics (what the body does to the drug) of levodopa. It's mainly an issue of CMAX, TMAX, THALF, AUC.

Seamus6 profile image
Seamus6

I constantly play around with the timing of meds, I only take C/L, I think it could be trickier with DA's etc.

Recently, I've been taking my first Sinemet progressively later during the day.

I'm now at 4pm first dose.

Of course I'm a bit slow and stiff until my first dose but everything is utterly predictable(I can exercise) and the Sinemet seems to be more effective when I do take it.

Seven years in, I realised that taking Sinemet constantly (from waking) was taking me to an abyss.

I'm fortunate though as I can exercise without meds and I don't have to work.

ConnieD profile image
ConnieD in reply to Seamus6

How much sinemet did you take per day when you were taking it all day?

Seamus6 profile image
Seamus6 in reply to ConnieD

Hi Connie...up to 6-7 100/25 every day (one every 2-3hrs) ...the off times were far worse than being unmedicated. I still take a CR 50/200 at bedtime which gives me a good night's sleep. Hope you're well.

jimcaster profile image
jimcaster

I agree. When a drug like carbidopa levodopa only provides symptomatic relief, it seems logical to tailor dosage to times when symptoms are more problematic, such as stressful situations and/or exercise. Maybe, it's imaginary but I feel like I "burn up" carbidopa levodopa when golfing or bowling. I enjoy both of those activities very much and I modify the timing of my dosages to enhance my game.

Buckholt profile image
Buckholt in reply to jimcaster

When I was first diagnosed I was told that exercise helps generate dopamine, but I would now say it consumes it

bradykin profile image
bradykin in reply to Buckholt

That's my experience as well (exercise consumes it).

1LittleWillow profile image
1LittleWillow

I use mucuna instead of Sinemet, and this is exactly what I do. In fact, yesterday I was thinking about writing a post very similar to this one you just shared. I've been wondering if there's any reason NOT sticking with a schedule could be a problem (because I never do), but I haven't seen my MDS in a while so haven't had the chance to ask him. There are days when I take nothing other than my supplements, days when I take a small dose every few hours, and days (most of the time) when I take 1 or 2 doses per day. It just depends on how I'm feeling and what I need to get done each day. It seems to work just fine for me.

Psalmody profile image
Psalmody in reply to 1LittleWillow

thank you I am in experimental stage between Mucana & sinemet because I think sinemet causes worse off time

JeanieBeanie profile image
JeanieBeanie

Agree with all said especially the exercise. After 28 years of PD all rules go out the window except don't let your dopamine levels get too low , including in the night.

Divii profile image
Divii

thanks for the sharing; I agree with you. I am a YOPD pt diagnosed at 28 and now 11 years later, I will say what timing works well with dopamine is dependent upon individual.

You may also like...