I’ve been diagnosed since early 2015; showing left hand tremor and loss of smell a few years prior. Been on Sinemet since 2017. Started on 25-100 three times a day and added a half dose (12.5-50) around 2019. I told my MDS that off periods, especially before 2nd pill late morning are getting worse. I’m exhausted, clumsy and overall feeling awful. However, I suspect that I’m experiencing slow progression. At 75 I’m independent, taking walks, still driving locally, preparing our meals. managing finances, able to manage alone for a week when my partner is visiting family. I’m also taking an anti hormonal drug that can cause joint pain. MDS doesn’t want to increase Sinemet because I have dyskinesia as it is and people might notice my involuntary hand movements and I might be embarrassed. I would rather feel better during off times and not worry that what others think. I’m 138 pounds, normal BMI. What is the dosage that some of you guys take?
Sinemet what is normal dose: I’ve been... - Cure Parkinson's
Sinemet what is normal dose
Because you are experiencing dyskinesia it is in order to try Sinemet controlled-release ("CR") in place of the immediate release ("IR") version that you are taking. The CR version has a more even plasma level over time - lower peak levels means less dyskinesia. See my post here for details:healthunlocked.com/cure-par...
Also, carbidopa levodopa extended-release ("ER") is the generic version of CR.
Longer duration should reduce your off periods as well.
Hi ParkbearThe Dr just prescribed siminet cr to my husband's regime and he's supposed to take 200/50 before bed. We are hesitant to start this drug because if he has a negative reaction to it, we can't just stop using it. Or that's what the pharmacist told him. He has severe dystonia when his madopar wears off and maybe this siminet cr before bed is supposed help with that? We are trying to understand is all. Thank you for your time.
Cheers
Mel
Hi Mel,
If a person has been taking any form of levodopa medication for some time, they cannot just suddenly stop taking levodopa. This applies to madopar, Sinemet, and everything else. This is because the body becomes used to the presence of levodopa and sudden withdrawal can cause very bad things to happen. What you can do is adjust dosage gradually over time.
In the case of adding a single dose of Sinemet to an existing madopar regimen, if one single dose does not agree with him, in my opinion as a fellow patient and not a medical doctor, he does not have to continue taking it as long he continues with the existing madopar regimen.
That said, I agree with the doctor's prescription and believe that Sinemet CR before bed will be helpful for him.
-PB
Thanks ParkBear. We will try it, I suppose. I just hope it will help his daytime dystonia and he won't have a bad reaction. It's confusing why he was told to take it at bedtime, since he sleeps good and doesn't have dystonia during his sleep. This is just an exhausting disease to navigate if you ask me.Thank you again!
Mel
Oh! I agree with you. That makes no sense at all. No reason to think that will help his daytime dystonia. What is his current medication regimen?
Well he was on madopar 100/25 every 3 hours until bedtime. He was doing that for a year now. His dystonia just kept him in despair since his on time was barely 2 hours then for over an hour he'd have a leg out of control twisting madly. So he had to be monitored by a nurse who medicated him etc. The findings were he was underdosed and so this week the neuro started him on 200/50 with a rapid 125 or 62.5 every 4 hours and the sinenent 200/50 cr just before bed. But he still has crazy dystonia even with this new dose. So we just thought we would not try the to add sinemet just yet esp since he's never tried it before.Thanks for listening
Cheers Mel
I disagree with park bear on taking night time sinemet. I think you may find it useful. From trial and error I know that Sinemet accumulates and I find the amount I have in 24 hrs makes a difference. It takes 3 days before you can get any idea if a drug will be useful and 3 weeks to really know. Where does he have dystonia and when in relation to pill taking?
Hi HikoiThank you for your message. We are just trying to adjust to his higher dose madopar and then we might try the siminet as prescribed. Did you find it worked at quelling dystonia? He usually get severe leg twisting with toe and foot as well . Sometimes it starts at the beginning of his dose like the first hour, but the Dr doesn't believe us for some reason. But mostly he has this problem after 3 hours after each dose. It can last for 1 to 4 hours sometimes. I wish the meds didn't introduce this issue. I know when he stops his meds he just has tremor and stiffness and he'd rather have that then dystonia. But we know stopping meds is not good either. I just think he's super sensitive to levadopa. Thank you again for your help.
Cheers
Mel
You have got your answer right here:
" I wish the meds didn't introduce this issue. I know when he stops his meds he just has tremor and stiffness and he'd rather have that then dystonia. "
Leg twisting out of control sounds more like dyskinesia then dystonia. But the terminology does not matter - the fact is he is way overdosed on levodopa.
"we know stopping meds is not good either"
Stopping levodopa medication completely all once is bad because it can cause a problem called serotonin syndrome. However, you can taper his medication to the desired level over time, and that level can be 0.
Levodopa medication is strictly for symptom relief - if it makes him worse there is no point in taking it. There is also a long-term adverse effect of high levels of levodopa medication. So if it is not helping all the more reason to cut back.
You may find some much lower level of levodopa medication is beneficial, but that remains to be seen.
I personally am a believer in time-released forms of levodopa which includes madopar HBS as well as Sinemet CR. At some point I believe is worth giving one of these a try. However, in my opinion, tapering his levodopa medication down to a level that does not cause so much misery is the 1st priority.
Thanks Park Bear. I too believe in a lower dose, but the doctor doesn't want to hear it. I know my husband suffers from dystonia from too much , or too little or in-between doses of levadopa. I honestly don't know what the answer is. The Dr doesn't seem to want to address the dystonia for some reason. But as I see it, he has adverse reactions to the stuff , esp when he's dropping off and sometimes at peak dose too. And maybe that's supposed to happen? All I know is it doesn't seem worth it. 2 or 3 hours of feeling ok then 2 or more hours of writhing in pain up and down like this for all day until bedtime. I just feel the positives don't out weigh the negatives, but we keep doing it because we hope by some miracle it will be a good day for once. Anyway I will continue to support him it's all I can do. Thanks again
Cheers
Mel
Hi Mel,I confused your story with the original poster Leonore and she is on sinemet 3xs a day. I find it hard to have two conversations in one thread now - the difficulties of multi tasking!
I dont have bad dystonia - was your husband young onset and how long has he been on meds? I sort of agree with park bear but not so fervently. He is on a mission to convert us to long acting meds which as I said elsewhere were not good for me at all and he takes very little medication himself I think so encourages others to do the same. I have had diagnosed PD for over 14 years now and have been very involved in learning about it since diagnosis. This link gives a good basic understanding of dystonia. What would help you is to monitor it to see whether it is peak dose or going off dystonia. From what you write it sounds like peak dose. That implies a reduction in the strength of each dose.
parkinson.org/Understanding...
Hi HikoiI understand how these threads get confusing 😆. It's hard sometimes to navigate this site if you ask me!
Thank you for your advice and yes my husband was diagnosed in 2017 at 57 years old. But he had symptoms prior. We didn't start to take rx meds really until the last year or so. He was using levadopa but from nutrivita. But levadopa in any form can lead to issues I know and we noticed the dystonia dyskinesia was starting and that's when we decided to try to blend it with Dr meds and now we are strictly on rx meds of madopar so far. But no matter how much or how little he takes he will get this crazy leg foot twisting usually within the first hour after a dose then 2 or 3 hours later it comes back at the end of dose. It's brutal. The Dr disagrees with us re peak dose since it's apparently super rare. So he won't address it. It's very frustrating to say the least! Thank you for your link and I will continue to hope for the best for you and everyone suffering this disease.
Cheers
Mel
I have not read park_bear 's reply (I do find him as reliable source of info). My input, unless they have added some magical ingredient as mention in my ( healthunlocked.com/cure-par... ) I would not recommend time release.
I wonder if your body is absorbing the medicine properly. Once I was tested positive for H-pylori and treated my abortion of CL improved
My husband has just been through two months of hell trying the slow release however it may just be it is too strong for him. He is on 3 1/2 x 62.5 madopar at the moment so the slow release builds up to a much higher level. It may be that it is just the right amount for you if you are on the 100/25 already. The theory of it seems good which is why he tried it.
For him I think he is still making a fair bit of his own dopamine but just doesn’t utilise it well. The natural dopamine cycle is at a low mid day and peak at midnight . He was ok in the mornings but each subsequent dose was making him more and more distressed as the tails of previous doses overlay each other, then the natural dopamine kicks in at night and he was going up the wall with rigidity and agitation.
If you are making a bit of your own in the evening it might explain why you feel a bit better then? Also you probably do a long stretch overnight with none so the first morning one is building off a low base then the subsequent ones build from the tail of the previous dose.
Have you tried taking mucuna pruriens with it or between doses? It has a different wearing off cycle so it might help. Here is a rough diagram of what I think happens with my husband. It would vary for each person, so try doing an hourly chart for a few days recording symptoms like rigidity, agitation, freezing, shaking , feeling good . Set out in columns and tick the ones you are feeling each hour. It can help try and figure out what your graph might look like.
He was taking his at 7, 11, 3 and the green line is the sum of all the tails from dose during the day plus the underlying natural dopamine.. The blue line is a guess at his natural dopamine production which might be nothing for some people, and the peaks are the individual doses.
LAJ12345 Thank you! I will seriously consider creating a graph at some point. Don’t have symptoms like your husband exhibits. I just feel tired and a bit clumsy 45 minutes before next dose but can still do everything just slowly. I would not take macuna without doctor’s ok because it is a form of levodopa. I am finding that getting outside,exercising and socializing helps . I just was curious if others have increased c/l over time.
You can create a graph of PD medications here:
You can create a graph of PD medications here:
Is your half dose once per day or with every full dose?
Half dose is once per day added to second dose which is 45-60 minutes before lunch.
I wonder if it would be better with the first as that one is starting from a low? Or after about 2 hours even better? See my graph how the first peak is lower and finishes the lowest for the day. Taking the half 2 hours after the first would make a little mini peak in the trough.
Parkinson's medication
Levocarb 5 doses (25 mg - 250 mg each)Carbidopa / Levodopa 7am , 11am, 3pm, 7pm, 11pm
plus two half doses taken when required usually 4 am
PMS-Ropinirole 4 doses x 1 tablet (2mg).
7am, 3pm,7pm 11 pm
PMS-Amantadine 3 doses x 1 capsule (100 mg)
7am, 11 am, 3pm
note Levocarb strength 25-250
I have tried a patch and also the time release a couple times each. Delivery of medication was unstable and inconsistent.
I dont think there is such a thing as a normal dose
I asked my Neurologist what the maximum dosage was and he confirmed there is no maximum just what each individual can with stand.
Take ER and experience less dyskinesia. I take - 50/200 Sometimes take 1 1/2. Dx 2017 74 years old
Lionore,
Personally I think you are probably slightly under dosed. You could increase the amount for your three doses (not just one dose as you currently do) or you could increase your intake to 4xs a day. I favour the latter especially if you have dyskinesia. It is disappointing that your neuro has decided that dyskinesia would be embarrassing for you!
I do wonder if it is true dyskinesia or a return of your tremor you say involuntary hand movements but dyskinesia is a whole body reaction. Has your neuro witnessed it or is she going on what you tell her?
My experience with long acting c/l was OK in the beginning but it was not good after a couple of years, i had longer and more pronounced offs.
Thanks for your suggestions!! My last four appointments were online. I may request an in person visit to have him get a better look. Actually I’m a bit confused but the difference between tremor and dyskinesia.
I’ve been spoiled for the last four years because the generic Sinemet is so inexpensive to begin with and my insurance plus help from a nonprofit bring the cost down at zero. I’m fine with cutting pills in half and with doctor approval may add an additional half dose either with my third dose or mid afternoon and see if involuntary movements decrease. Perhaps I’m too good at adapting to these fluctuations. If I was forced to work I might have to add another medication. I met someone 20 years younger with a full time job who takes an inhaled c/l for instant relief. As we all know there’s no magic bullet. Going on any new medication would mean staying low key for several weeks to monitor side effects.
Lionore you are very sensible and you will get this sorted. Giving your drug regime and diagnosis date at the beginning was very helpful.
Re the person working, Did you know younger onset tend to progress slower. Another piece of info levadopa (generic name for sinemet or Madopar) has a half life of 60 - 90 minutes. Early on we can store it between doses but latter we dont have that ability hence we have to take it more often. You are reaching that stage.
Good luck
. Different drugs have different half-lives; however, they all follow this rule: after one half-life has passed, 50% of the initial drug amount is removed from the body.
You are not alone, most people would not be able to tell the difference in the worst cases of either . We seldom see the worst cases. MIchael J Fox as an example has been accused of both taking too much Levadopa and not taking enough to appear worse in his speech to the US Senate and many think he is a prime example of dyskinesia.He is not
You are miles away from taking too much and your neuro either has not seen you and acted without facts or does not know what he is looking at. Either way I would consider finding someone else who has experience. You have been diagnosed 6 years and in my experience you are lightly dosed but everyone is different. I think that the odds are that you do not have Dyskinesia .
I do not think it matters what you weigh, the levadopa is treating your brain not your muscles.
iwas taking 25/100 6-8/day sinemet 2 of which were prn. switched to rytary..no more off times and mood is stabilized. i take 4 rytary 3 times a day ER 23.75-95 mg per capsule. there are conversion charts for sinemet to rytary online. hang tough.
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