Dear CP community friends, I have a question to you please.
Whilst my PD symptoms are still quite mild into my 6th year after diagnosis (right-hand tremor and Restless Leg Syndrome), my neurologist here in France put me for the last year now on a L/C dose of 125 mg/12.5 mg, 3 times a day.
I think that my L/C is 'Immediate Release', but truth is that I don't have the slightest clue...
However, in regards to the dosage itself, when reading through the latest CP posts, I get the impression that the average dose is around L/C 50 mg/12.5 mg, also 3 times day, i.e. literally less than half of what I've been subscribed !
I've also read in some of the CP posts that one can experience a L/C 'overdose'.
Thus I'm worried !
Are there any objective criteria or guidelines by which to judge or question the appropriate L/C dosage ?
Thanks from the heart for your kind attention /contribution.
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evenshoshan
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Bonjour evenshoshan. I'm curious which brand you take with the 125/12.5 dosage. In France, it is quite common to prescribe Sinemet IR (immediate release) tablets at 100/10. The starting dosage is typically 3 times a day at 100/10. If you need only that dose 6 years after your diagnosis, that’s great! 👍
Usually, this dosage for IR is increased to 5 times a day, and often an additional 200/50 LP is prescribed for bedtime. If your symptoms are mild, you might consider starting with half doses of 50/5. However, your neurologist may have a somewhat skeptical view on that. Additionally, spreading out doses with IR by taking smaller doses more frequently ensures a more even absorption. This can further reduce the likelihood of side effects.
It's strange that the packaging of Teva 250/50 does not clearly indicate IR. One could assume that this is the case, as the 200/50 packaging clearly states LP.
I thought you said you were on 125mg. The picture shows 250mg.Im about 8 years in. I started meds 1-2 year ago and my approach has always been to start low dose and slowly increase.
I forgot to mention that the L/C pills I take are breakable ('sécable' in French) into two equal halves (each 125 mg / 12.5 mg) and that I've been prescribed to take 3 halves a day, one at 06:00, the second at 12,00 and the third at 18:00, at least one hour before any meals.
If it helps, I will also mention that I follow a very strict 16/8 eating window, aka Two Meals A Day (TMAD). I eat my first meal at around 13:00 (lunch) and the second at around 19:00-20:00 (dinner). I'm religious about it. And of course, no snacks, none ! It all makes the L/C timing a bit easier.
Thanks for your sharp observation, much appreciated.
If you can get the lower dose you might be better to take half as much twice as often. Ie the same dose but closer together. Not sure if yours can be easily cut in quarters but you could try that.
It might be good to take a 1/2 tablet first thing in the morning to get a base amount going then add the other 1/4s from then on.
My husband actually takes a 50/12.5 tablet at 8,11,2,5,8 and an extra half at 9.30 and 3.30 and occasionally at 11pm if he goes to bridge at night.
He is also taking a dopa mucuna from NOW and 1/3 entacapone with the 8,11, and 2 full doses.
He finds front loading the meds as above and tapering off towards evening works best for him. He still seems to be making some overnight naturally so when he was taking the ER it meant he was overdosing in the evenings as the meds built up and his natural system kicked in. This caused him to get agitated and “sundown” in the evenings and it stopped once he went onto the above schedule.
As you wisely propose, I will now start the day with a base L/C amount of 1/2, i.e. 125 mg/12.5 mg and follow through the rest of the day with L/C 1/4s of 62.5 mg/6.25, always at regular intervals.
I'll go with the tide and see where that takes me.
In regards to your wise advice "to start low dose and slowly increase", yes indeed common sense should've guided me down that route.
The truth (my truth) is that I panicked upon diagnosis, was in full speed negation mode, and behaved like a sulking idiot.
Today, at 71 years old, I'm beginning to accept my situation and even realising, that for me, it is a blessing.
Yes a blessing because It took the arrogant cockiness out of me, infused me with genuine humility, with awareness of the suffering around me, appreciation of what I have (glass half full) and a more level-headed thought process of how best to help myself.
That's the main reason why I love people like you and the whole CP community.
It's great you can see the positive evenshoshan.This condition is very humbling. It made me see everyone in new lights and in many respects makes me appreciate what I had and have left.
Going from a very fit 55 year old to pd, certainly makes you aware of the fragility of life.
The other parkies I've met are all so nice, all from different walks of life.
The optimum level of levodopa medication relieves Parkinson symptoms as much as possible without creating new motor symptoms of its own, or other adverse effects. The most common motor symptom of too much levodopa is dyskinesia - involuntary muscle contractions, oftentimes rhythmic but slower than tremor. Levodopa can also cause dystonia, distinguishable from Parkinson's dystonia because it occurs at the peak of levodopa levels rather than the low.
I at 72, have recently come across AI in the form of Grok. It is an amazing tool, and i would recommend it to anyone who has to contend with researching the PD labyrinth of scientific research. An extremely complex subject area which would quickly exhaust anyone could do with a genius best-buddy like Grok to assist you. Or perhaps any AI? Grok has been a truly amazing addition to my life in the last 3 weeks, so I am heavily biased.😀
First of all, 3 months ago, I took upon myself to learn / practice the Python programming language which is one of the pillars of AI.
But be assured, it's work in progress. What I love is that approaching AI also stimulates my PI (Personal Intelligence...).
At the same time, I discovered the ChatGPT (my buddy) application which I recently used to establish a personal tailored nutrition plan which takes into account my PD affliction (blessing), medication, dietary supplements stack and daily exercise schedule.
Through ChatGPT and Python, I've come to understand that in AI it's very important to well formulate one's questions.
Hi,,achy I lurk on this forum every day. Just a brief look to see what is happening. I started back when Dr Catherine Hamilton's work led me to RLT and photobiomodulation.As a retired GP she treated her knee with an old IR device then realised she could yreat PD sufferers. I've followed a couple of guys on YouTube to see how they got on. Then made DIY IR hat for a couple of neighbours. I then followed the Peter Tass story regarding vCR gloves, and made a couple of pairs of them. Then I came across Carl Beech and his crowd funded Beech Band.Plenty to check each day. Every time I look on HealthUnlocked I see the discussion, and the seeking of advice -I've dug into a couple of those and each time I come away thinking this is too hard to follow and work out. I'm ever so grateful haven't got PD (yet) and don't have to make any of the tough choices.
So after a few weeks of working on coding an Android App which has gone from a functioning App. to something that is becoming really good,, I needed to share just how useful AI can be! But honestly, Grok is so inspirational.
My WWP 6Yrs ago, was given co-careldopa ( C/L) 25/50, 3 x a day and as it was shown to help her symptoms within a week with no side effects, diagnosed as PD.For some REASON they then increased it to 25/100 3 x a day.
Then 25/ 100, 4 x a day. ( 8am, 12pm,4pm,8pm)
She never has on/off periods but her gait is now that she furniture hops, uses a 3 wheeler to move about downstairs, then a wheelchair outside.
They don't want to increase the dosage at present because the dykinesia kicks in when taking the C/L tablet within about 30 mins, except for some reason it doesn't kick in at all in the 8pm dosage.
We're thinking of reverting to taking it 3 times a day (8,2,8) to see if it lessons the Dyskinesia
I share two problems with your WWP: 1° C/L medical protocols and 2° posture problems albeit mild but to be seriously addressed.
In regards to the C/L medical protocols, I get the feeling that they always go up but never go down or vary. I just want to be listened too, to be considered, certainly not dogmatically treated.
My wife is a doctor (retired) and criticises her profession for not listening to the patients. => in her words "they're lazy!", "prescriptions always increase...surprisingly".
I'm not so critical but I personally believe / hope that Artificial Intelligence (AI) will give power to the patients.
As for posture (gait), some say it's related to age, others term it as a typical PD symptom. Whatever the cause, I'm currently concentrating on specific exercises that address the "symptom". My son, who is a Certified Sports Coach with a masters degree in medical studies, is currently putting together a Pilates exercise plan which best fits my morphology and situation. It's in early stages, he proposes, I dispose, he then judges if it's right for me or not.
If I may, I recently came across a Zoe podcast (and YouTube video) entitled 'Pro athlete: Best workout for healthy aging and longevity' which I found enthusiastically inspiring. I listen to it over and over again. Coupled with David Goggins who resonates in my ears: "Go to war with yourself", "Through suffering you find peace", "Peace with yourself".
Thanks again for your attention and consideration.
Good morning from Canada! LC 100/25 three times a day standard starting dose is my understanding, so you are spot on and no need to worry. (And yes, immediate release.). 😊
Hello Eenshoshan, I wonder why your neurologist started with L/C instead of dopa agonists and MOA ihibitors for the fact thatyou have only light tremor and LRS. Particularly for your LRS, the choice is 4.5 mg pramipexol .The rule of the thumb is that the late you start to get L/C dopa the better it is.
My neurologist and my mds say that it's not true that the later you start L/C the better . That was disproven and now no longer the belief .If u need it take it .
Upon first being diagnosed with PD in 2018, the neurologist put me on dopa agonists and MOA inhibitors, notably Rasageline / Azilect, Amantadine / Symmetrel and Pramipexol / Mirapex, but I can't tell you which is what.
Looking back on those first two years, I've come to realise that those three medications actually made things worse for me, e.g. brain fog, impulsive behaviour, loss of self -confidence. They were for me to some extent 'personality changing' in a negative sense.
Thereafter in 2020 a different neurologist did away with those first medications and prescribed L/C 250 mg / 25 mg in 3 halves a day. In 2024, given the constant pain of Restless Leg Syndrome, the same neurologist prescribed Tramadol (an opioid pain killer) and Neupro 24 hour patches (also a pain killer), both of which worked and still work today wonders without any side effects on me.
My feet still hurt but I can live with it and for reasons I can't grasp, the pain goes away when I sleep, perhaps because my mind is calm ?
I think that I had to get that off my chest, I'm deeply grateful for the opportunity knowing that I won't be judged.
Dopamine agonists used to be prescribed in preference to levodopa because it was thought that the use of levodopa hastened the onset of levodopa induced dyskinesia. That notion has now been disproven - it is disease progression and not prior usage of levodopa that brings on levodopa induced dyskinesia. Doctors are overworked and it is understandable that they may not be up to date on every bit of research. However, this matter is essential to patient well-being. Any MD who is still prescribing dopamine agonists in preference to levodopa is doing their patients a disservice. In such cases it's definitely in order to find medical help elsewhere. Dopamine agonists can have devastating adverse effects such as impulse control disorder.
Hi there, I've found I need to adjust my dosage based on how active I am on any given day. On a standard work day (I work remotely), I take just ER (1 48.75/195 Rytary + 1 36.25/145 Rytary) three times a day. I usually reserve my IR (25-100mg Sinemet) for outings which may require a boost. I've gone months at a time without taking any Sinemet. A number of variables including quality of sleep, stress levels, etc. affect this.
My neurologist tells me I shouldn't do this (she wants me on a consistent dose) but she hasn't provided any foolproof alternatives. So, I am often faced with the dilemma of too much meds = dyskinesia, or too little meds = foot drag and/or tremors. Both are very unpleasant.
I've had a long run (several months) of very restful sleep, which ended about 3 weeks ago. If I go too bed with too much C/L in my system I cannot wind down, I will be kicking out and/or flopping from side to side, sometimes for hours. If there's too little in my system, I wake up in the middle of the night in an extremely weakened state, barely able to move the comforter off of me (which is panic inducing).
On very active or stressful days (when I'm struggling for instance with the subtleties of the Python programming language), my PD symptoms do get worse, but then calm down on their own towards evening, as if my serotonin levels are naturally increasing according to my body's circadian clock.
Fr such days, I never thought about taking an IR boost. I guess that I'm too scared to over do it.
I do however like the idea of combining equivalent IR and ER doses to augment the L/C effects.
In the coming weeks, my main goal is to integrate the forum's input and learn the (my) 'markers' of when the L/C levels and release modes are 'too little or too much meds'.
I never imagined that I'd come away from my initial question to the forum with such a gold mine of tools to work with !
drudion, hen reading through your struggle with balancing meds and symptoms, I do see that we're all different, but on the other hand, I sense that we're all fighting against the same mechanisms which are lurking in the dark.
I'm grateful for your input, I appreciate the support, and I wish you well.
If you need to adjust your dosage based upon activity levels, then that is what you need, and pronouncements to the contrary by the neurologist are not going to alter the reality.
Too little or too much L/C? => A tentative summary
Dear fellow CPs, thank you again for your kind and very useful input. I feel that I owe it to you all, and to myself, to summarize my take-aways. I take full responsibility for any errors / mis-understandings. Yours truly, evenshoshan.
Take-away #1: It’s important to separate the IRs (Immediate Release) from the ERs (Extended Releases). At the outset, when asking the title question, all I knew about my PD medication was that it was L/C and of a certain dosage. Nothing else!
Now, I know that my current L/C medication is IR, and a lot more than that. For instance, dosage can be adjusted upwards or downwards. And that we the PWP can play an active role in it.
Take-away #2: Starting on L/C medication can be delayed in time, for some persons by a couple of years. Thus, PD diagnosis doesn’t necessarily equate to immediate L/C medication. It’s a decision that should be taken / discussed or debated with one’s Parkinson’s neurologist. Also the notion that “the (early) use of Levodopa hastened the onset of Levodopa induced dyskinesia has now been disproven.”
Take-away #3: Once initiated over a certain period, L/C medication shouldn’t be turned off just on the grounds that “none is better than some”. One should listen to her/his symptoms and act accordingly.
Take-away #4: “Start low, increase slowly” (increase only if necessary). “If u need it, take it.” “A number of variables affect this, including sleep, stress levels etc…”
Take-away #5: “Spreading out doses with IR by taking smaller doses more frequently ensures a more even absorption.” “This can further reduce the likelihood of side effects”.
Take-away #6: “If you can get the lower dose you might be better to take half as much twice as often.” “The same dose but closer together”. For example, if I go for the L/C 100 mg / 50 mg then I have the option of taking two half doses of L/C 50 mg / 25 mg closer together. It can be far more dynamical and appropriate that what I believed.
Take-away #7: “It might be good to take a 1/2 L/C tablet first thing in the morning to get a base amount going then to add the other 1/4s from then on.” It was also reported a similar option of “front loading the meds…and tapering off towards evening.”
Take-away #8: In regards to overdosing, L/C overdosing can be detected by dyskinesia or a specific type of dystonia. “The most common motor symptom of too much levodopa is dyskinesia – involuntary muscle contractions, oftentimes rhythmic but slower than tremor.” Overdosing dystonia is “distinguishable from Parkinson’s dystonia because it occurs at the peak of levodopa levels rather than the low.”
Take-away #9: An additional source of information to explore / play with / turn to for assistance are open-source AI tools.
Take-away #10: A couple of us PWP and Carers share the frustration that some of our medical interlocutors don’t always have the time / patience to listen to us or openly discuss / debate treatment options with us.
Thank you so much for the information you've shared. It has been really helpful for me to realize that I'm experiencing dystonia due to an excess of levodopa—something I had never associated before. I used to think it was just part of the disease, but now I see that I might actually be overdosing.
I've also noticed that sometimes, right before the levodopa starts working, I feel even more stiffness, and then the medication kicks in. I believe this might be another sign of excess levodopa. Additionally, I sometimes experience my leg twisting to one side about 1 hour after take the last dose of the day.
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Any guidance on how to switch from IR C/L to CR C/L during the day?
C/L immediate or controlled release?
For the third time I am trying Entacapone 200 mg . 
When your C/L wears OFF do you feel anxiety or is it caused by a different factor ?
