Parkinson's unusual 'off' times. Wearing off begins, but medication kicks back in before taking next pill.

[filmor14]

My Mom was diagnosed a few years ago with PD, but it has progressed a lot in the past year. She got into a stable routine with C-L(25-100), although she experiences 'off times' or as she calls it 'slow downs' two hours after each pill. The strange thing is that it goes away after 45 minutes-1 hour, without even taking the next pill. No one seems to have heard of this pattern, or knows why the medication wears off, but than suddenly kicks back in for no apparent reason. Has anyone had a similar experience?

[park_bear]

Immediate release or controlled release version?

[filmor14 in reply to park_bear]

Immediate Release

[Hikoi]

I have heard people talk of this but it is occasional not regular.

[Juliegrace]

Yes, I experience this. I am "on" then if I miss my dose window I will go through a 'slow down' and come out of it not quite "on" but more able than during the 'slow down.' This is how I manage sleep. I take my last c/l between 4:30-6:00 PM and function well for about three hours, then go through the 'slow down' for about an hour, then am pretty good until late bedtime through late morning when I take my first c/l usually between 9:30-10:30 AM. I take one 10/100 c/l IR every two hours if I want to stay "on." How far apart is she spacing her doses?

[filmor14 in reply to Juliegrace]

She takes her doses at 5 am, 9 am, 2 pm, 8pm

[Juliegrace in reply to filmor14]

Many PWP have to adjust the timing and/or increase their mess as time goes by. My doc is fine with me adjusting the timing of my pills according to how I feel rather than a set schedule. Maybe you can discuss it with her doctor to move her doses closer together.

[Juliegrace in reply to Juliegrace]

Meds not mess. Autocorrect 🙄

[johntPM]

Most PwP still have the ability to produce and store some of the dopamine that is needed. This is called endogenous dopamine. The dopamine that comes indirectly from the levodopa pills is called exogenous. I think, this is a theory, I don't know whether it is true, when you take a dose you have more dopamine than you need (but not necessarily in the right place). The levodopa takes a while to get into the brain (CMAX about 60 minutes). The body responds to that by reducing endogenous dopamine production. The exogenous dopamine does well for the next 2-4 hours depending on the severity of the disease (THALF of C/L is about 90 minutes), but then runs out. The patient is now at his/her worst. But, if another dose is not taken, the body responds by turning back on the endogenous dopamine production, albeit damaged, leading to a limited improvement in the state.

John

[glenandgerry in reply to johntPM]

Thanks - makes sense.

[johntPM in reply to johntPM]

My appologies, I wrote "CMAX about 60 minutes". I should have said "TMAX about 60 minutes".

[filmor14 in reply to johntPM]

This is a really interesting theory, but makes total sense! Thanks for your insight!

[glenandgerry]

My husband is presently experiencing the same sort of thing. He was diagnosed almost 14 years ago but in the past year has deteriorated a lot (I think mainly due to chronic pain which we are trying to get to the bottom of). He says he's now finding that his 'off' symptoms gradually recede after about 45 mins without taking another dose of sinemet (just like your Mom).