I have recently started to experience a twitchy left leg which my neurologist says is dyskinesia. It happens about an hour after I’ve taken Madopar. I tried taking one 100/25 tablet in the morning and another about 8pm. This seemed to work but at my last visit I was told that I would be much better taking half a pill every four hours to even the dose. I tried this for a week but the tremors I haven’t experienced for almost five years returned with a vengeance and I felt terrible. No dyskinesia though. Today I went back to my old regime of Madopar 100/25 3 times a day and 1 Azilect. I feel fine again - but the twitchy leg is back. If I take 2 a day with the up to 12 hour gap I don’t have off periods and the twitching is much less. I’m just worried that if I don’t follow my neurologist’s advice I may have a worse outcome further down the track. Has anyone else experienced this? I’m 80 years old, diagnosed 5 years ago, but like most people I realise I had PD long before that.
Any suggestions for managing this kind of... - Cure Parkinson's
Any suggestions for managing this kind of dyskinesia?
I’m just worried that if I don’t follow my neurologist’s advice I may have a worse outcome further down the track.
You know best how to dose - even better than your neurologist. It’s your body and you know first hand how you react to the dosing schedules.
So go right ahead with the dosing schedule that brings the best relief. The dosing is for symptom relief only: parkinson drugs have nothing to do with outcomes ‘down the track’. 🌹
Try ropinirole.
Only as a last resort. After 5 years 50% of dopamine agonist users suffer from impulse control disorder.
On high doses
I take 1x8mg SR Ropinirole in the evening and it definitely keeps the potential twitching of my left leg under control
Amantadine solved my left leg twitching as well as other dyskinesia.
Madopar has Benserazide and Levodopa in it whereas Sinemet has Carbidopa and Levodopa in it. Look at the graph below of how the plasma levels of these two vary. Madopar reaches a much higher peak (double) during the first hour after taking it compared to Sinemet, which may be a reason for the dyskinesia you experience. If it is possible for your doctor to prescribe Sinemet in place of Madopar, it might be worth a try to see if it can reduce the dyskinesia. Failing that, it might be worth exploring the option of sustained release Madopar. Show this graph to your doctor to help persuade him to consider Sinemet if possible, where you are.
Art
onlinelibrary.wiley.com/doi...
In addition to working with different excipients, the carbidopa and benserazide are used here in different weight quantities,10 mg versus 25 mg. At equal amounts, I expect similar peak values and the effectiveness will be more or less equal.
Madopar looks like it is available at 62.5 mg levodopa and 12.5 mg Benserazide and then it goes up to 100/25. Sinemet is available as 100 mg levodopa with 10 mg of carbidopa and that looks like it can reduce that first hour peak which may be the problem. These two doses are considered to be similar, but they apparently aren't.
onlinelibrary.wiley.com/doi...
Here is a quote from the study discussing this similarity :
' Our cross-over study in healthy subjects showed that the pharmacokinetics of levodopa were different after oral administration of levodopa/benserazide 100/25 mg and levodopa/carbidopa 100/10 mg, even though these formulations are generally regarded as providing identical levodopa exposure in practice in Japan and a few other countries. '
Art
The conclusions in the research about the greater efficacy of benserazide 25/100 compared to carbidopa 10/100 is kicking open an open door. At least the carbidopa 25/100 version should also have been looked at to make a proper comparison. On the impact of higher (minimum) carbidopa, I still have no data. I have asked HU for this several times.
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
Perhaps it would be good to ask the pharmacokinetics, pharmacodynamics from the pharmaceutical manufacturers.
That would be useful information.
Specific to this post, the dyskinesia being experienced about one hour after taking Madopar seems like it could be caused by the levodopa surge caused by Madopar in that first hour when bandmember is reporting it. Sinemet at 100/10, with a significantly lower levodopa surge in the first hour shows potential to alleviate that dyskinesia while still providing adequate Levodopa for symptom management.
Art
Confusing to me is that the developer/manufacturer of Madopar has to be aware of that first hour surge, so why don't they offer their product with lower Benserazide levels as a standard available option?
Art
Art's initial choice for 12.5/50 Madopar seems like an option to me if you spread this well over the day in 5 doses. Here is a proposal. Indeed, our choices are too coarse and limited when you see how dependent we are on a precise dosage.
Funnily enough that's almost exactly what my neurologist suggested - only 4 times a day rather than 5. I stuck to it for a week, feeling worse every day. Now I'm back to one 100/25 in the morning and 1/2 pill (ie 50/12.5) in the afternoon and evening). We'll see how that goes, but I feel much better.
However, the difference is that due to an additional intake, the minimum values remain stable at an interval of 3.5 hours. At the first intake, the summit is slightly lower, but by taking the first interval a little shorter, 3 hours, you prevent the levodopa level from sinking too far away that can bother you for the rest of the day. Although there are of course individual differences, you will usually hardly be able to prevent too large peaks and troughs at larger intervals, due to only 2 or 3 intakes which may cause the problems you have described. 🍀
Unless you are hypersensitive or allergic to carbidopa, according to my doctor and pharmacist Benserazide and Carbidopa you can use them interchangeably. Starting the day with a Sinemet 10/100 IR may therefore also be possible.
For the fine-tuning of the levodopa medication I would prefer to use a mix of CR and IR. However, at lower doses this is not possible because the CR version is not available in12,5/50 and if you cut the 25/100 in half, the pill turns into an IR. Is 12.5/50 CR available elsewhere?
I agree with Casey. Do what works for you in terms of dosing, especially if less works better for you.
you are doing really well only taking 3 madopar a day. If the twitching is bearable I’d not increase dose.
Docs love to increase meds but it can cause other problems.
I found when neurologist got me to increase dose of 100/25 I would get dyskenisia and when I asked him he said that the extra med caused it . I find if I take even alittle to much to to close to other dose it happens.
Do you exercise? Power for Parkinson’s is a great gentle online exercise program
All the best
He was OK with me reducing from 3 to 2 pills a day - but he wanted me to spread them out and take 1/2 four times a day. This just didn't work. The dyskinesia isn't really bad yet, just tiring. I certainly do exercise - three classes a week, a dance class, cross trainer at home... I did PD Warrior when I was first diagnosed - helped a lot. I also did Daily Dose for a couple of years but it all got a bit expensive - and I discovered loads of free stuff on You Tube. I used to run marathons but two hip replacements put paid to that. I play French horn and tenor horn (badly)- that helps the cognitive side. I'm just petrified of developing really bad dyskinesia!
Well done, you are doing all the right things!!! I have done PD warrior too which is great. Good you are playing an instrument. I play piano which can be difficult at times. I actually started on herbal PD called Mucana Purierns and finding them a great help. I have reduced the madopar. I have had bad reactions to Madopar & Sinemet so neurologist was happy for me to try Mucana Purierns and I feel alot better. Keep up your good work !
Thanks everyone for the suggestions. I'm going to go back to experimenting. If it doesn't improve I'll look into the other meds that have been suggested.
Does the leg twitching last? I get that sometimes when the levodopa kicks in for about 5-10 minutes. Not every dose. The good part is I know the meds are about to work.
It varies. If I'm just sitting it is worse. Sometimes it can last for a couple of hours or more. Stress and tiredness make it much worse. I slept well last night, took my first dose about an hour and a half ago and so far I feel fine. Often I seem to be better when the meds are supposed to have worn off! Baffling!
I am curious to read responses because my husband has recently developed dyskinesia in his right leg. However it is strange because it doesn't usually occur until late in the afternoon long after his midday carbidopa/levadopa. Thus, I don't see how these could be the result of excess c/l.
He doesn't take his final (third dose of c/l) til bedtime as his MDS hoped that his painful muscle cramps might eased by this.
His nightime cramps are fairly typical, acutely painful but short- lived leg cramps but he is now developing abrupt hand cramps during the day in which his fingers and thumb curl up in a death grip and I have to pry them open. I think these may be due to distonia?
He would like to consider DBS but turned 78 yesterday. Is that too old?
So many questions...???
Dyskinesia can also occur during wearing off and turning on phase of med cycle. Mine is worst during the wearing off phase and milder when meds are kicking in and during peak.
Maybe he needs another dose or half dose in the afternoon which also might help with the dystonia. I think it would be up to his doctor to decide if DBS is appropriate.
My husband suffered badly with cramping legs and hands. I put him on magnesium chelate 200mg morning and night plus 353mg of potassium per day and it has helped him immensely - they may help you as well.
My doctor asked me to track exactly how many minutes past taking a pill that the dyskinesia (or dystonia) started. I very diligently tracked every dose and discovered that it started on average 91 minutes after a full dose. That helped her decide how to tweak my dosage. Good luck.
my husband was taking Amantadine but it gave him awful hallucinations and his neurologist wasn’t happy that he was taking it so she had him stop. His dyskinesia is back with a vengeance! I definitely want to find something else sans hallucinations!
sudden increase in dyskinesia 
Restless legs only at night
Massive facial hair 🙁
Functional medicine practitioner in the UK or similar 
