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Parkinson's and "Off" Times

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Old 04-09-2019, 02:33 PM   #1
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Default Parkinson's and "Off" Times

I am looking to see if anyone or a family member with Parkinson's has the same problem as my mother. She was diagnosed with early onset PD about 25 years ago. She has done ok, until the last couple of years the meds don't seen to work as well for her. She is already on a fairly high dose of Rytary. Her PD is more rigidity and extreme fatigue (some balance). The meds allow her to be active and mobile. My question is in regards to "off" times. I have read about how there is some "off" time between doses. However, my mother says that there are some days her meds work better than others. On bad days she mostly wants to lay in bed and is very depressed. On good days, she wants to go non-stop, even to her own detriment. On bad days she can't go as long between doses, on good days she can go farther. Just looking for perspective to better understand what she is going through so I can help her. Thanks.
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Old 04-10-2019, 03:07 AM   #2
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MCG,

Welcome to the forum.

I'm not a doctor, so make of this what you will.

"Off" time is a common feature of PD, especially as the disease progresses and the body makes less and less of its own dopamine. But, with close attention to one's medication, "off" time can be reduced

Unfortunately, we can't take dopamine to make up for the loss directly. This is because dopamine does not cross the blood brain barrier. Instead we take levodopa which does cross the BBB. Once in the brain, levodopa can be converted into dopamine.

The first question is: is there enough levodopa in the medication to make up for the deficit? The second (and third and fourth ... ) is: does the body get the most out of the levodopa that is taken?

It's one thing taking levodopa, it's another thing getting it to the part of the brain where it can do some good. Fat in the diet may delay gastric emptying. Protein in the diet may compete for absorption into the blood stream. Bacteria in the gut are thought to affect the absorption of levodopa. And there are chemicals in the blood which try to metabolize the levodopa early (to reduce this, levodopa is usually taken with carbidopa, or similar).

The situation is made more complicated because levodopa has a half-life of only about 90 minutes.

The more you can control these variables the smaller the day to day variations.

John
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Old 04-10-2019, 09:27 AM   #3
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My symptoms are similar to your mother's. as we age we lose dopamine producing neurons, if we lived long enough theoretically everyone would lose enough of these neurons resulting in the manifestation of some parkinson's symptoms. pd'ers have lost a lot more of these neurons and have to get dopamine from oral medication which works well but gradually works less well as the natural dopamine production in the brain decreases to the point where you have to take dopamine many times a day in the form of l-dopa. your brain doesn't need a lot of l-dopa and it's estimated less than 5% of the l-dopa you take actually gets to the part of the brain where needed. this is due to the fact that every cell in your body has enzymes in it that destroy l-dopa, which is good if you don't have pd, you really don't want l-dopa getting into your brain if your're healthy, it can lower your blood pressure, cause mental problems. but pd'ers need to get l-dopa thru the stomach, thru the small intestine, into the blood and eventually into the brain, all the while running a gauntlet of cells that destroy it. so the goal of every pd'er taking l-dopa (the active ingredient in rytary) is to get l-dopa into the brain as fast as possible BUT NOT TOO MUCH l-dopa. and that's the challenge. too much rtytary causes involuntary movements, too little causes the rigidity and fatigue. so, what slows down the movement of l-dopa to the brain? well, anything that slows down the movement of food thru the digestive system. gastric emptying takes longer with fatty meals, i assume the same with fiber. protein interferes with l-dopa getting to the brain. constipation, changes in bacteria can have an affect. now i'm describing my situation, i can't say with 100% certainty that your mother is in the same boat. if i ate a slice of pizza i would have to wait at least 2hrs before my next dose, if i ate half a pizza it could be much longer. so food for me is the primary thing i have to control if i don't want long off times.
to solve this problem, i should figure out a diet that would have minimal negative affect on my pd until the evening where i could eat the majority of my protein since i could afford to be off. so that means eating small meals with less than 4grams of protein/meal. unfortunately i don't have the will power to do this everyday and knowingly eat too much at just go OFF and wait 2hrs for my next dose, sometimes i'll take extra l-dopa sooner than 2hrs, maybe 250mg instead of 150 but one has to be very careful.
so unfortunately i can't give you a meal planner to try to see if your mother's inconsistency is caused by food, the simplest thing to do is have her skip a meal or fast for half a day and see if the rytary does a more consistant job controlling her pd symptoms. if it does, then at least you know looking into creating a diet for her is worth the effort.. it's hard to believe but you won't find many meal planners with recipes for advanced pd'ers even though food can have such a major affect for some pd'ers. if her neuro will talk to you ask him/her about this.

Last edited by soccertese; 04-10-2019 at 01:02 PM.
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Old 04-10-2019, 12:58 PM   #4
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Intestinal regularity/irregularity/ constipation/ absorption/ proteins..all can be a factor, plus as we age we tend to absorb less nutrients overall...

There are past posts on those topics-
https://www.neurotalk.org/search.php
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Old 04-11-2019, 01:05 PM   #5
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Thanks all for your input. I suspected diet might be part of it. Her's is not the best. She eats lots of ice cream. But it is difficult to track what she eats all day when I am not there. Just wanted some clarification on how she is feeling, cause doctors dont tell you everything. Thanks again.
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Old 04-11-2019, 01:45 PM   #6
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And Drs don't know everything...
So many variables of PD and people respond to meds differently too.
6 friends/relatives of my parents generation (approx age 80s+) all have had different variations..
Sometimes a med change can be tested or if other meds are in the mix, and they aren't working as they should..
We stopped the lesser meds as time passed, as dad was having more side effects & no benefit from them.. Ok per dr.
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Old 04-11-2019, 06:29 PM   #7
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I've not seen much comment about Intec Pharma's Accordian pill that is in phase 3 development. It's supposed to release l dopa for up to 12 hours. Wouldn't this potentially be a breakthrough for those of us in mid to late stage of PD. Why is this not on the the radar. Or am I wrong?
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Old 04-11-2019, 08:56 PM   #8
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Still in testing/trials..
Phase 3 Trial of Accordion Pill in Treating Parkinson's 'Off' Periods Fully Enrolled

more -
Intec Pharma's Accordian pill - Google Search
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Old 04-11-2019, 09:26 PM   #9
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sure it will help but it will be very expensive. two drugs that will hopefully shorten off times and bypass digestive system problems are two unapproved drugs sublingual apomorphine and inhaled l-dopa. i would assume eating a lot of protein would still cause an OFF with the accordian pill but probably wouldn't last as long. depends how long the amino acids stay in the blood which would affect getting l-dopa THRU the BBB.


LOOKS like the accordian pill dose is three times a day.
SO ASSUME A MONTH'S SUPPLY IS $800/MONTH, 90 PILLS. THAT WOULD COST $8-9/PILL? WONDER HOW CLINICAL trial results compare to RYTARY.
Intec Pharma Completes Enrollment of Pivotal Phase 3 Clinical Trial of Accordion Pill™ Carbidopa/Levodopa for the Treatment of Advanced Parkinson's Disease Patients
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