I'm on 800mg L-Dopa a day, 200mg every 6 hours.
Anyone on higher, either daily, or take a higher dose?
L-Dopa dosage: I'm on 800mg L-Dopa a day... - Cure Parkinson's
L-Dopa dosage
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Grey_Area
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I’m also taking 800mg /day, in 3 hour intervals around the clock; 7am, 10am, 1pm, 4pm, 7pm, 10pm, 1am, 4am.
I’ve been on that schedule for several years. I was diagnosed in June of 2017; and gradually increased my dosage from 1 pill every 4 hours around the clock to 1 pill every 3 hours around the clock.
It seems to me that I’m wearing off sooner lately, than I have over the past few years. I don’t want to increase the number of milligrams of C/L I’m taking. I’d rather shorten the intervals between each dose.
Shortening the time between doses is going to complicate things. Rather than a 3 hour interval between doses I’m shortening it to two and a half hours….
It will look like 7am, 9:30am, 12:noon, 2:30pm, 5pm, 7:30pm, 10pm, 12:30am. I may have to add another 100mg at 3am and stretch the time between 5:30am and 7am; but I’m hoping I can sleep through that time.
C/L 25/100 6am,9am,12n,3pm,6pm,9pmAll regular release
@10:30 pm 50/200 CR
According to the pharmacist, it takes about 90 minutes for this bill to start breaking down. So it is actually my midnight pill intended to last for 6 hours and let me sleep.
Interesting, the 90 min info. Do you kniw if taking two 25/100s CR takes 90 min as well?
I've been taking 1.5 CR 4x day, i know the half is like taking IR.
I'm in a narrow window -- too much makes me compulsive and interferes with sleep. Too little and i spend much of the afternoon OFF.
So this sort of detail is significant for me.
From my basic chemistry, two 25/100 pills will break down faster than one 50/200. It's all about surface area of the pills and two pills gives more available surface area than one.
After that it's all about the body's ability to absorb it, but as long as the two pills aren't at the maximum rate (and we know they are not), then one single pill should indeed be slower...but I've no idea by how much!
My prescription is C/L 4x 25/250mg plus entacapone 4x 200mg/ day. I split the levodopa pills.
19 years post DX, my regimen is:
5 * 100 mg Stalevo which equates to 500*1.33 = 667 mb LED (levodopa equivalent dose) the first taken at 0700, the remainder taken just before when required (dynamic dosing)
8 mg ropinirole = 8 *20 = 160 mb LED taken at 0700
1 mg rasagiline = 1*100 = 100 mb LED taken at 0700
Total = 927 mb LED
This regimen works quite well for me in addressing my motor symptoms; but, less well dealing with other symptoms, such as speech.
John
John your Rasagiline dosage interests me...I'm again being told by my specialist that 1mg is the maximum...all good ammunition...
Just curious: how did you compute the LED for rasagiline? Is there a good reference for that? Thanks!
See:
"Levodopa Equivalent Dose Conversion Factors: An Updated Proposal Including Opicapone and Safinamide"
Sebastian Schade, MD,corresponding author 1 Brit Mollenhauer, MD, 2 , 3 and Claudia Trenkwalder, MD 2 , 4
ncbi.nlm.nih.gov/pmc/articl...
Whether this is a "good" reference is another matter. The 100 to 1 ratio looks very rounded to me.
Sorry for my late reply, and thanks again for the reference, which makes it clear that they are just guessing. Although, very subjectively, to equate 1mg rasagiline with 100mg levodopa may be a little high -- or is that level meant to be divided by 24 hrs?
You're right. The total LED for the two drugs at these doses is thought to be the same. But, rasagiline is much slower to take effect, and lasts longer. This might cause of the observation that one does not usually feel an effect when you take rasagiline, but that doesn't mean that it isn't working in the background.
See the app that I wrote:
parkinsonsmeasurement.org/t...
The app takes into account both the amount of levodopa, or equivalent, contained in a dose, the speed at which it becomes active and its half-life. It draws graphs of the changes of the concentrations during the day.
Yes, the app is really very useful and instructive, thank you very much for providing it!
I had just wondered how one might compute the LED of rasagiline, as it does not add external levodopa but rather slows or prevents the breakdown of endogenous dopamine. So its effect depends on the amount of dopamine that can still be produced naturally, which may be quite different from one person to the next. So I was curious how one could put a hard number on that.
Thanks all, keep 'em coming. I've a meeting with my specialist on Thursday so I'm trying to get an idea of this "suggested maximum dosage" of 800mg daily.
I've just spent 20 days or so recording my "on time", which, like Caitlin I think is reducing over time (been diagnosed 9 years, but probably had it 15 or so). Stalevo gave me - wait for it - 7 minutes of extra "on time" per day. Simply not worth it given the effect on my appetite
...in fact the suppression of that alone could be easily responsible for the difference, as I've had a couple of good meals out since coming off it, and we all know L-Dopa and food don't play nice together...
As I'm on CR, I think the 800 limit (if it is to be enforced at all) should be increased to at least 1100 or so to allow for its thirty-six percent lower bioavailability.
Any how I'll have that argument on Thursday...I'll let you all know how it goes.
have you researched opicopone for lengthening In time
Tried it but had really bad reaction. Made it impossible to sleep and gave me a urine infection. Only took it for three days!
2.5 x 25/100, that’s 312.5mg every 3hrs, 5 times a day, at 8am,11,2,5,8 for a total of 1562.5mg a day. Really just for right side tremor. Works well when on for about 2hrs per dose. 54 years old, diagnosed 6 years ago.
Wow. Highest dose I've seen. Thank you for sharing. Any side effects? My specialist seems obsessed with dyskinesia...but I suffer most from rigidity. ☹️ And how do you cope with that 8 pm to 8 am gap? My Parkinson's Nurse keeps suggesting similar but I get bad (agonising) cramps if I let my body "run low" on L-Dopa hence my 24hr coverage.
Surgeons often have available a range of muscle relaxants, I guess the general public doesn't know but people with a lot of PT and surgery experience are aware of them, or maybe they don't want to use them for longer term problems...maybe you could consult with a doctor about the different ones available to be judiciously used for a chronic situation? Really I don't know for sure but I understand it's quite a number of different levels they can choose from.
It would be nice if my doc could actually suggest something (other than the Sertraline, which you'd think they must be getting some sort of kickback for, the way they push it for everything) rather than me having to do all my own research!
I take 2 tablets 25-100 5 times a day. I was taking 2 2/2 but was having lots of low blood pressure issues. My family Dr took me off all blood pressure medicine and my neurologist suggested cutting back on my Sinemet. This seems to be working but my blood pressure still goes up and down . But I’m not having those almost fainting issues when I stand up
Hard to tell if/what is a side effect. I’m very tremor dominant , on my dominant right side. A little bit of dystonia on my right side creeping in. Definitely fatigue through the day especially around 5pm and some anxiety then too. Less than perfect sleep, often broken and less than 7hrs (5mg melatonin 2hrs before sleep time might be helping). I’m a little intrigued by the serotonin/GABA discussion, which triggered me with the mention of the study that made a distinction between resting tremor and resting+postural tremor, which could be my PD subtype. I’ve also previously tried rasagiline, artane and propranolol to no effect.
I normally have no problems falling asleep probably because my sleep rarely feels restful. Even if my last dose is fading I find that as I fall asleep my tremor settles. I sometimes need to do some active finger exercises to distract myself as sleep comes on or actually lay on top of my arm to quell the tremors.
Thanks. I tried sleeping on my arm but all that does is deaden it, which is very scary...I wake up with no feeling in it at all, it just hangs there like a boiled noodle. I have to knead it with my other hand to bring feeling back, and when feeling returns I have pins and needles for about 15 minutes. Not pleasant, and I also wonder if it can cause any long term damage.
0.75 x 200mg every 2 hours.7am, 9am, 11am, 1pm, 3pm, 5pm, 7pm & 9pm =1200mg plus 2 x 100mg of amandatine plus 4 mg neupro patch. diagnosed in 2017, DBS in 2020
Did you reduce your meds at all post DBS? I am planning on DBS this fall and hoping to be able to reduce my meds at least a little. I currently take a total of 800-900 per day. Would you consider your DBS successful and would you do it again knowing what you know now?
put it this way, without DBS I will be much worse off, but every one is different, I am still working so i am more demanding on my condition
I take a higher dose before. 250 mg 4x-5x a day. Dyskinesia developed. Terrible 😔
I'm 56, starting PD symptoms on 2017,
diagnosed on 2021, start with 300 mg L-dopa per day.
Now I'm 400 mg L-dopa per day + 50mg Opicapone. (so after 7 years starting PD I'm on 400 mg L-dopa!!! or after 3 years starting L-dopa now I take 400 mg of it since 4 months)
I take Q10 , PS128, L-Theanine 500mg every day.
During the week I take:
B1 25mg on Monday
B2, Tuesday
B12 25mg, Wednesday
B complex, Thrusday
Eating everything not much.
I do sport every day: walking, yoga, swimming, running, cycling, dancing.... It is important to do sport!!!!!
What difference has opicapone made to your On time. I’m trying to get it prescribed but uk NHS says it’s too expensive
I'm in the UK and I got it, but it cause a really bad reaction and so I didn't really get chance to assess it's effect on "on" time. Are you going through your GP or a specialist?
MDS and Parkinson’s nurse and she just says No with no reason. I guess it’s cost.
You're allowed to know why - ask! There's no advantage to being too polite!
My on time is little longer with Opicapone. In Italy it is free for PD people.
I understand that the NHS treatment path requires patients to get Entacapone first because it’s cheaper. Only then, to move to Opicapone if clinically justified.
I agree because I was prescribed entacapone 4 weeks ago but it’s making me feel really sick following the 2nd dose of the day. I’m recording how I feel every day anyway
Hi Grey area I'm sure your 1st question you ask your Neuro on Thursday will be why he has a rigid 800mg limit. Will you report back the answer please.
I think it was the manufacturer's recommendation, but times have changed since then, but I don't think the NHS has caught up yet.
Well, it's only been 60 years or so...
Ok, appointment was today, and I asked. His first reason was "Addiction. Dopamine addiction." Then, almost as an afterthought he added "and long term issues, particularly dyskinesia". At the end of the appointment I almost begged him to consider increasing the amount, but as he'd made other suggestions (or agreed to ones I'd made) he refused. I'll put more detail in the main thread.
Dopamine addiction...interesting.
Yes, interesting...and illogical. Parkinson's sufferers have reduced dopamine compared to non-sufferers. All the L-dopa does is "top us up"...I still think they're not being honest and the real reason is cost.
Actually the PD nurse team are calling it "Dopamine dysregulation syndrome". I looked it up.
en.m.wikipedia.org/wiki/Dop...
I've never felt "Euphoria" from the meds and never made up a symptom. I had a gambling problem with fruit machines in my late teens, but haven't for forty years now. Sexual behaviour of any sort is a distant memory; I joke that by the time in upright in the morning, nothing else is!
Thats a new accronym to add.I'm at the other end of the spectrum, trying to limit my intake and focusing on exercise, diet and sleep. But I'm Interested in how we're all dealing with it differently.
I think we'd all like to see "down the other leg of the trousers of time", as the great author Terry Pratchett would have called it. Back in 2015 I was certain I wanted L-Dopa as soon as possible. I was only 48 and had stuff to do, and who knows what other "old age ailment" could have befallen me in 5, 10 or 15 years?
Now, I wonder if I'd have been better off waiting. But truth is, we cannot, and never will know. Be it fate or self determination, one thing is certain; you can never go back.
So I would advise others not to worry and rehash the past.
If I could just follow my own advice too, that would be great. 😒
That's true. We are all making our own individual paths and no one is measuring our changes in an accurate, meaningful way, or the effects our actions have to give a best path answer.
Good luck on your particular journey Grey area.
Nice to find a fellow philosopher...no man is an island, but we must all make some journeys alone.
1740 for me...Rytary, C/L PRN 4XS per/day along with Apomorphine PRN. Oh, I forgot, Selegline 50 mg. Wow!!! My major malfunction freezing of gait.
I am on (200 + 50) x 5 times a day, for a total of 1 250 mg LevoDopa (modopar) per day. I am 68, diagnosed PD 6 years ago, but I tremors started about 10 years ago. LevoDopa helps a lot for tremors, but only for a couple of hours... I suffer lack of sleep problem. I get tired quite easily. But generally, I am rather fine. No Dyskinesia, so far.
My husband, 77 and diagnosed in 2018 is on Carb-Levo 25/100 and takes Levo 900/day. He takes 1.5 tabs every 3.5 hours except 1 tab at 8 pm, 10 pm and 3 am. He's been on this dose for years. Nourianz 20 mg was added a few years ago which smoothed out any off time. He couldn't tolerate Entacapone. Nourianz is super expensive at the start of the year but on Medicare is 0$ copay by the time July comes around as it puts him in the "catastrophic" coverage benefit rather quickly. He has never had a tremor but bradykinesia, rigidity and dystonia. No dyskinesia.
Hello, I was dx 2019. Have tried a handful of “sides” none so far give me my sweet spot. CL or Sinement I take 25/100mg every two hours 24/7. Sometimes every hour. I have no dyskinesia anymore just Tremors in my hands and legs. Not constant but if I don’t stick to the two hour mark or when I start to feel off and it’s hard to keep tremors under control. The dyskinesia stopped when I stopped taking Rasagaline. Sometimes I will drink some tea with a quarter to 1/ half teaspoon of Organic Mucuna Powder (NOVA Nutritions) too much can give you dyskinesia so just limit it back. 1/4 teaspoon equals 1000 mg max per day is 3000 mg. Usually a quarter teaspoon helps with some movements (Gary Sharpe) dance, biking, walking, etc. my neurologist is pushing DBS but I am not interested at this point.
have you considered DBS?
No, I dont want my brain cut into until I feel I have exhausted all other options. FUS sounds promising. Im researching now.
I think you need to print up this conversation and show it to your so-called physician, warts and all.
I am giving my mother the following C/L Doses daily:
7.00 am : 1 Pill - Controlled Release (25/100) + 1/2 Pill - Regular Release(25/100)
11.00 am : 1 Pill - Controlled Release (25/100) + 1/2 Pill - Regular Release(25/100)
3.00 pm : 1 Pill - Controlled Release (25/100)
6.30 pm : 1 Pill - Controlled Release (25/100) + 1 Pill - Regular Release (25 /100)
for the past couple of years I’ve been taking c/l, 4x-25/250 per day+entacapone every 4 hours. It very effectively controls my left side tremor under normal circumstances, but gives out half way through my pickleball sessions. My doctor suggested I take a dose while playing and it helps, but the absorption delay can be bothersome. In order to maintain tremor control over my symptoms since diagnosis 10 years ago, I have steadily increased my dose and interval.
I am 1.5 years post diagnosis and take one quarter tablet CL 25/100 IR plus one Now brand mucuna capsule, twice a day.
Hmm, it does seem a majority of the "800+" club are from outside of the UK. ☹️
100 mg, every 6 hrs., plus 1 mg rasagiline per day. Diagnosed in 2023, but first symptoms began about 4 years earlier.
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