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
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.
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.
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...
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!
Thanks- I was going to start with grapefruit juice, then forgot about it! I’ll have to go buy some later!
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!
Less is more! That is what our Vanderbilt MDS stated!
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.
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.
What is the other 60%?
There's a little mucuna powder, but the majority of the 60% is maltodextrin.
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
Hi, how do you take B1? Thanks!
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!
Could you please let me know of the add-ons, my father is in late PS and I have to research.. Thanks!
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
Hi! What is the exact effect of Amantadine, does it relieve dyskinesia? Thanks!
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.
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.
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
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.
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
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.
How do you take 1/4 madopar? My Madopar is a capsule which I couldn't divide?
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!
Has anyone experience dyskinesia and how do you handle it?
Peak doses of levodopa - how extreme are your symptoms? 
High Dose Thiamine (HDT)—How critical is the sweet spot?
Anyone experience a wearing off cough/shortness of breath?What do you think of Low-Dose Lithium?
ETTERUS, VIVACE 1017 AND HIDDEN. HOW ARE YOU FEELING, SEVEN OR EIGHT YEARS POST DBS SURGERY?
