LDopa doses - rigid timing or flexible d... - Cure Parkinson's

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LDopa doses - rigid timing or flexible depending on how you feel?

Marcomando profile image
30 Replies

Interested to know how people take their meds.

My consultant seemed to think I should take them at fixed intervals - whereas I’ve tried to be more flexible, some days taking just 2 doses, busy work days maybe four.

I find meds take an hour to kick in and I can feel them waning after 3and a half hours so full efficacy is only for two and a half hours - but this can vary a little if I’m relaxed/tired etc

Marc

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Marcomando profile image
Marcomando
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30 Replies
Buckholt profile image
Buckholt

Can't answer your question but have tended to think along the same lines. Neurologist again told me to take regularly to try and smooth out the peaks and troughs of receptor stimulation. I have started to be more consistent. Instinctively, I thought if I didn't feel the need or If I was inactive at home, say relaxing watching TV, I could skip a dose.

On the other hand, I do continue to manipulate the timing a little to suit my day. If I know I need to do some walking or activity, I will time my dose to get the best effect.

johntPM profile image
johntPM

The consultant is probably recommending fixed intervals between the doses because it is an easier to follow regimen than the flexible approach, and so compliance is more likely.

However, PwP who can be trusted to take a dose when it is needed will have more consistent levodopa levels. This is because on busy days you use more levodopa. Other factors that can affect levodopa needs are the absorption from the gut and stress. And, don't forget that, certainly in the first few years of the disease, PwP will still be producing some of their own levodopa (endogenous).

I use "dynamic dosing": taking the next dose in time for it to kick in just when the previous dose runs out. But, this requires that you can read the signs that you are about to go off in time to do something about it.

Marc, you say that you only get "full efficacy for two and a half hours" per dose. It may be time to close that gap by increasing your dose size of increasing the dose frequency.

Marcomando profile image
Marcomando in reply tojohntPM

Perhaps so - I’m on 3 x 100/25mg per day. Started on LDopa (Madopar) about 18 months ago, was dx 3.5 years ago. I guess it’s time to look at increasing it...

TheLordsWeapon profile image
TheLordsWeapon in reply toMarcomando

Ello Marc

We have a few things in common, I was also 54 when I was diagnosed back in July 2016, I started out at 100mg c/l three times a day and in 2 years went to 250mg four times a day, not good!

Currently I take 200mg c/l four times a day which takes about 30-40min (Once in a while it takes about an hour) to start working and then its roughly 3.5 to 4.0 hours of "on" time relief before I start about a 40 min "off" time until next dose.

I was taking a 250mg c/l dose four times a day until I started testing with Grapefruit Juice, now my current daily dose is 200mg four times a day taken about every 4 to 4.5 hrs

God Speed!

Marcomando profile image
Marcomando in reply toTheLordsWeapon

Thanks- I was going to start with grapefruit juice, then forgot about it! I’ll have to go buy some later!

TheLordsWeapon profile image
TheLordsWeapon in reply toMarcomando

Marc, I would suggest talking with your doctor and also reading the following FDA report before starting any GJ testing

FDA REPORT:

fda.gov/consumers/consumer-...

God Speed!

Despe profile image
Despe in reply toMarcomando

Less is more! That is what our Vanderbilt MDS stated!

awranck profile image
awranck

Hi Marconando! I have timers set on my Fitbit Versa watch so that I take my Sinemet 25/100 every 6 hours during the day - at 6am, noon, and 6pm. I find that taking it on an empty stomach increases it’s effectiveness and extends my on time. I also practice intermittent fasting and try not to eat too much protein which inhibits the absorption of carbidopa/levodopa. If I stick carefully to this fairly strict regimen, I experience hardly any “off” episodes - only when I am very stressed or fatigued. I want to stay on this low dose of Sinemet for as long as possible, so I’m pretty religious about the whole thing.

Ramondo profile image
Ramondo in reply toawranck

Six hour gap seems very long

badgerABC profile image
badgerABC

Hi Marconando, I take 40% l-dopa powder and take one dose when I get up around 6:30, another dose five and a half hours later around noon, and the last dose of the day around 5:30. I do take a fairly large dosage.

MBAnderson profile image
MBAnderson in reply tobadgerABC

What is the other 60%?

badgerABC profile image
badgerABC in reply toMBAnderson

There's a little mucuna powder, but the majority of the 60% is maltodextrin.

Painty23Painty profile image
Painty23Painty

Hi Marconando

I find since starting B1 I don’t need to take my Half (25/100) tablet for three or four hours after I get up in which time I do my exercise, running and so on thus I often take it after iv got to work which is when I need it every 3 or 4 hours until 4 pm when I take no more unles I’m going out, I think it’s got to be better to respond to your body’s needs and use as little as pos

I was dx 2017 age 56 have been on c/l 9 months

GalinaBlanca profile image
GalinaBlanca in reply toPainty23Painty

Hi, how do you take B1? Thanks!

VocalBasic profile image
VocalBasic

It's all about your stage you're in with your Parkinson's, so be ready for changes. L-dopa treatment changes with your progression, for some lucky patients they can adjust over a period of time, Others have it harder to keep up with their adjustments, what used to be 4 hour interval for me has over time become 2½ - 3 hour. No regrets. There are add-on enhancers later in the game. Don't fret, keep active!

GalinaBlanca profile image
GalinaBlanca in reply toVocalBasic

Could you please let me know of the add-ons, my father is in late PS and I have to research.. Thanks!

GymBag profile image
GymBag

APO-Levocarb 5 doses x 1 tablet (25 mg - 250 mg each)

Carbidopa / Levodopa 7am, 11am, 3pm, 7pm, 11pm

PMS-Ropinirole 3 doses x 1 tablet (2mg), plus 2 doses x 1mg tablet

7am, 1pm, 7pm

PMS-Amantadine 3 doses x 1 capsule (100 mg)

7am, 11 am, 3pm

I find that the closer I can stay with the prescribed times the better I am. Not as easy to do as one would think though. The casual take it when you need it approach does not work for me. Takes too long to kick in when you need it and give you that relief. "Man dont you love it when the drugs kick in." Michael J. Fox

GalinaBlanca profile image
GalinaBlanca in reply toGymBag

Hi! What is the exact effect of Amantadine, does it relieve dyskinesia? Thanks!

Niggs profile image
Niggs

Any deviation from my timings ie late or missed dose, change of dose times results in an obvious decline in symptom control which can take days to settle. Whilst I don't doubt that some pwp's are able to successfully adopt dynamic dosing to their advantage, it is certainly not a viable method for me. I should point out that I have a long history of negative reactions to psychoactive medication and have had tolerance/side effect issues with PD drugs since day one, and this probably has something to do with my lack of dynamic dosing success.

Stazina profile image
Stazina

It's important to keep a steady level of medication in your bloodstream, thereby keeping a therapeutic level of medication reaching your brain to produce Dopamine. Waiting to take your medication when symptoms arise will result in poor symptom control.

buedog profile image
buedog

I'm using the DBS . and the Dr has got me on a 1/2 of sinemet some days i can handle that . but if I"m working on project or doing a lot of walking I`ll take a full dose. Has anybody had difficulty swallowing

Johnboy46 profile image
Johnboy46

I take my first meds (Sinemet ) when I get up, 7/8/9AM, then second dose 3-5 PM and 3rd 8-10PM , no difference in good or bad days ,just do their best.

willowone123 profile image
willowone123

I also tend to follow a somewhat flexible schedule - I take a "half- dose" after about three hours some days, particularly if I am stressed at work, or if it is a day with extra exertion ( I participate in a group exercise called "Delay the Disease" two days per week and I bowl one day per week). A normal dose is C/L 10-100 and I try to keep it to three ( or four) per day with no additional supplements for off-times. But I am always reading about those who do supplement with Macauna (sp?) , madopar, ets

Astra7 profile image
Astra7

My neuro recommendation is to take it regularly. I basically do, but vary a bit to fit what I’m doing or how I feel. I take extra before tennis or stressful situations.

It takes around an hour to fully work and lasts around 3.5 hrs for me. I take 1/4 madapor 4 times a day.

Buckholt profile image
Buckholt in reply toAstra7

How do you take 1/4 madopar? My Madopar is a capsule which I couldn't divide?

jeffreyn profile image
jeffreyn in reply toBuckholt

My Madopar 100/25 tablets are double scored, and I have a pill cutter.

Astra7 profile image
Astra7 in reply toBuckholt

Mine is an orange tablet that is scored into 4. Is your controlled release maybe? I’m in Australia.

Buckholt profile image
Buckholt in reply toAstra7

Thanks. In UK only ever been given/offered capsules?

Jenzo profile image
Jenzo

I take fixed doses as I find once my walking is bad it's harder to play catch up while my dose kicks in as opposed to pre-empting it. I take meds 3 times daily and a 4th if I'm going out instead of at home. What and when I eat plays a huge roll also. Seems we are all different. Trial and error. Good luck!

GalinaBlanca profile image
GalinaBlanca

Has anyone experience dyskinesia and how do you handle it?

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