I've been on C/L for about two years now. 25/100 3 times a day. I space between 5 to 6 hours with each dose. The past year I've been suffering with a lot of dyskinesia about 2 to 2 1/2 hours after each dose. It usually subsides about an hour to an hour and a half later when it's almost time for the next dose. My Neuro is suggesting halving the dose and taking it every 3 hours 6x per day. She wants me to try this for a few weeks and if I have no relief, we will try Rytary again and add 1/2 dose of the 25/100 C/L. My concern is the eating schedule with taking it six times a day. Is anyone on or have tried it before?
C/L and Dyskinesia : I've been on C/L for... - Cure Parkinson's
C/L and Dyskinesia
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mauigirl18
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If it's only the initial dose giving dyskinesia, might you try halving only the first dose then after those two halves are done revert to 25/100 for the next two.
Thank you. I should've said each dose. Unfortunately, it does happen with each dose.
I suffered from dyskinesa for ten years and got no relief from numerous changes in dosage. Six months ago I started replacing my 8a.m. and 11a.m. sinamet with100mg capsules of mucuna purines. These last 4 hours each and I have no dyskinesa when I take them. So I am dyskinesa free from 8 a.m. to 4 p.m.
Where do you purchase them from and what brand ?
I got it on Amazon. Sorry, I meant 1000 mg. It is Mucuna Pruriens Extract .Double Wood Supplement
Thanks joanne
Mucuna / british-supplements.net
Thank you Joanne!
Good morning , I agree with you, I have similar routine which free me from Dyskinesia until 12pm , then first dose of c/l
You might also consider the controlled release / extended release version instead of the immediate release which is prescribed by default. More even levels with a lower peak may be less prone to causing dyskinesia. Detail here: healthunlocked.com/cure-par...
This is great! Thank you Park_Bear!!
Be careful with that. For some it is terrible. Other people love it.
It nearly killed my hubby with all the symptoms you currently report and choking his throat so he could barely breathe.
I think it was too strong for him but he couldn’t take less further apart as he still burned through them really fast and wore off after 3 hours.
It didn’t work for us either. Didn’t have the choking or breathing symptoms, but made Parkinson’s symptoms worse.
What is his schedule like now?
50/12.5 madopar white tablet at 8am , 11, 2, 5, 8pm
1/2 dose at 6.30 am or when he wakes, 9.30, 3.30
Plus 1 dopa mucuna now brand and 1/3 entacapone tablet with the 8, 11, 2 doses of madopar.
1/4 clonazapam x 0.5mg at 6.30 or when he wakes, 9.30 and 3.30 and 1/2 before bed
I put the 9.30 and 3.30 doses into a capsule together for him to make it less onerous.
If we are away from the house I put the days worth into a large pill divider/ carrier along with his supplements to make it easier to carry but you could do that yourself each morning so you aren’t in and out of bottles all day.
Thank you!
Hi park_bear, I agree with you that with the prolonged release and therefore with a lower peak of Levodopa you can reduce dyskinesias and probably also nausea. Unfortunately I can't manage this release mode well. I don't find it reliable because the ON effect it generates is not constant. Along the path (ON) you can go through OFF moments of variable duration. So if you are driving or in a meeting this can create serious difficulties. No problem if you are in your family.
It sounds like wearing off dyskinesia, which I know from personal experience is miserable. Try the schedule your MDS is suggesting. It might help to keep your levels steadier.
Thanks Juliegrace! No fun as you know. Yes starting the new schedule today and we shall see.
I was diagnosed with Parkinson’s 8 years ago. Because I have unusually good balance and akinetic presentation (none to negligible resting tremor) I had significant symptoms for over two years before that. I had problems with dyskinesia and digestive interference with medication effectiveness from the beginning, I was a mess on Rytary because instead of extending the medication, it dumped levodopa into my system too quickly. I found that extended release Sinimet worked far better for me, so you might try that. I have also found that heated styles of yoga assist with dyskinesia and digestive issues. I found that for the long term DBS surgery was the answer. It is a bit early for you, but a few more years down the road it can be extremely helpful. I get very little dyskinesia now and less dystonia and I can move more consistently. I don’t have off periods anymore, just semi brown outs if I eat a bit too much at once. A word of caution about DBS, it can amplify your moods. If you have anxiety issues it can intensify a sort of anxiety fugue state. So make sure that you can manage anxiety before getting DBS, would be my advice.
Thank you Jeagar! I will ask about the extended release and as I didn't do well on the Rytary when I tried it.. I will also look into that hot yoga. Sometimes the Dyskenisia seems worse than everything else . Over the past year I have developed very high anxiety. I swim and walk for that and do a little tai chi to try and get that in check. Like the "brown outs" terminology
thanks for the caution on the DBS.
Try using a small dose of clonazapam for anxiety. My husband takes 1 0.5mg cut into 1/4 spread over the day.
Thank you !
I would try Ashwagandha before you start clonazepam. Once you are on clonazepam, it’s hard to get off and long term effects of clonazepam have not been studied
Ok thank you
My HWP started to get dyskinesia and dystonia after 5 years in. Tried the half doses every couple of hours for a few days, but then was very slow, I don’t think the doses were strong enough each time to make any difference to the symptoms, but the dyskinesia stopped.
It’s been a trial and error for a long time. He now takes a full dose in the morning, (100mgs) dyskinesia can arrive after a couple of hours but not always. Followed by a half dose mid morning, then a full dose mid afternoon, then a half dose in the evening. It has lessened the dyskinesia and dystonia. So altogether 300 mgs C/L during the day time.
Recently after asking for extended release he finally was allowed it so takes an extended release during the night, just 100 mgs before bedtime. This has helped with evening out fluctuations of doses. He also took fish oils and cdpciticholine during the day time as recommended by Laura Mischley, not quite the doses she recommends.
Eating doesn’t seem to effect his taking of meds, he doesn’t take the morning ones until after breakfast or the hit of dopamine meds is too much and sets of dyskinesia pretty quickly.
Thank you for this is Zella. I did try the fish oil and CDP about a year ago and had bad heart palpitations so I stopped it for a while. Someone told me it could be the fish oil causing that . It did get better after I stopped. I am seeing how much trial and error goes into this for everyone. I hope he is doing better with it.
What works for me is halving dose 1 and keeping the others the same. It felt counter intuitive but I think it prevented too much 'stacking' as doses built up. I went from 2 hours dyskinesia 45 mins or so after each dose to an occasional 10-15 mins. It took a bit of time to get it right - sending you lots of positivity.
Thank you Smokeypurple. Glad you found something that works. Patience is the key I guess.
Laurie Mishley treats dyskinesia initially with fish oil and then citicoline. She has an online PD course where this is addressed. She says it is uncommon for her patients to develop dyskinesia, but if a new patient arrives with dyskinesia this is her approach.
Can you elaborate on when to take these and how much? Is there a fish oil that can be taken without food? I never remember.
Best to check out Laurie Mischley’s YouTube video called “Using fish oil to reduce levodopa-induced dyskinesia in Parkinson’s”, which spells it all out. She starts with one Tablespoon High DHA Fish Oil (this is a higher dose than you would normally take and recommends a non- contaminated brand) for a month or two (which may decrease dyskinesia by ~ 30%-40%), then add citicoline(500 mg in morning, 500 mg at night) which may reduce the amount of levodopa needed which will reduce dyskinesia further.
Thanks Ashti. I did try earlier and had a problem with the fish oil. I think I'll go back on and review that course.
Sorry to hear you seemed to have a reaction from the fish oil. Best wishes with this.
Thank you. I think I'm gonna give it another try.
Have you tried the slow release version? The gradual uptake might help your body adjust? Be aware that the controlled release version is about 70% the bioavailability of the normal release (ie effectively a lower dose). Might be worth asking your doctor about it?
Yes, thank you I will ask. I had tried Rytary and it didn't go well.
Yeah they keep shouting about Rytary as if it's the world's first controlled release L-Dopa, but it's not. Over here in the UK we've had Sinemet CR for decades...(CR = controlled release).
I have been diagnosed 2 years ago and started Dyskinesia about half a year ago while I was taking daily 300 mg Levodopa plus Ropinirol (a dopamine agonist) then I switched to Neupro Patch (Rotigonine transdermal patches). Two month ago I started taking Amantandine. I take 50mg in the morning and 50 mg at noon. So far it seems to help.
(Info from the Internet: Amantadine is an antiviral agent found to have an antiparkinsonian effect with several proposed mechanisms of action. These include the release of dopamine from central neurons, delay of dopamine uptake by neural cells, blockade of N-methyl d-aspartate (NMDA) receptors, and anticholinergic effects.)
The suggestions I have read in this thread to substitute Levodopa partwise with Mucuna Pruriens Extract is very interesting, especially since C/L doesn't work so well for me, I am considering trying it.
Thank you. She had mentioned the amantadine as well as a possibility. Do you have any side effects from it so far? I am looking further into the mucana as well. I see a lot of people using that in addition to the C/L.
Amantadine works really well for me. I started it when I was on 3 x 100/25 madopar per day, now I’m on 4.
Thank you
I take Rytary. PM me
I have to take my c/l every 2 hours and the eating schedule is terrible. I end up snacking on what I consider junk all day and have a good protein meal right before bedtime.
I'm afraid of that too! It's going take a lot of discipline with the new eating schedule.
I take half a dose 7x a day. I vastly prefer it. No big ups and downs. I just have to be careful about high protein meals.
i'm glad to hear it's working for you. What is your eating schedule like?
I eat at the usual times. Breakfast around 10, lunch at 1, dinner around 6. Honestly I’ve never really had much interference from food, unless it’s a protein bar or shake. But of course everyone is different. I wind up taking a half dose about every two hours.
OK great thanks so much! So do you end up taking about 350mg of C/L per day?
correct
yes, my husband takes the 50/12.5 madopar tablets and takes them 8,11,2,5,8
Then takes an extra half at 9.30 am and 3.30 am.
Also a NOW dopa mucuna and 1/3 entacapone at 8,11, 2 with the madopar.
He eats at 9, 12.30-1, 6-6.30.
It works well. He is the best he has been.
My wife who has had PD 12 yrs now takes 8 25/100, 4 50/200 CDLD, 2 Amantadine 100 mg and 4 Entacapone 200 mg and a mixture of other drugs and vitamins. Due to my wife’s Dyskinesia we are investigating Ongentys
ONGENTYS is the first and only once-daily treatment that can optimize levodopa therapy for people experiencing PD "off" time
as it claims to increase on time by 1-2 hours I believe. We are also investigating the CDLP pump by Abbvie
Date October 17, 2024
According to a new announcement, the FDA has approved AbbVie’s foscarbidopa/foslevodopa, marketed as Vyalev, as the first and only subcutaneous 24-hour infusion of levodopa-based therapy for the treatment of motor fluctuations in adults with advanced Parkinson disease (PD). The company noted that timing for a patient's access to the therapy is dependent on their individual insurance plan, with coverage for Medicare patients expected in the second half of 2025
Yes I have read that the FDA just approved the Vyalev in October. I will read up on the Ongentys. Thank you so much and good luck with these!
I have done this except I stopped at 5 - 1/2 pills. The dyskinesia is less but not eliminated. Timing is important. For me 2 3/4 hours was the best. After starting cinnamon for a couple of months, I returned to 3 times per day 5 hours apart, but with 3/4 pill. A whole pill is no go. Dyskinesia is slightly worse but the convenience is worth it.
This is interesting thank you. The half doesn't seem to be cutting it so I'll try the three-quarter. So you do the three-quarter every 2 3/4 hour? How is the cinnamon been working for you?
The 3/4 pill I do at about 5 hours apart. The timing is not important as there is no buildup from the previous dose still having some effect. The cinnamon (Ceylon, not the stuff in the grocery store) has reduced hand tremors a little which was enough to allow the 3 dose per day regimen for the C/L. Cinnamon may do other things such as reduce blood sugar and blood pressure both of which are good for me but not for everybody.
Ok thank you. Yes I take the Ceylon also.
I have the same problem. Medications has not been the answer for me. Currently I’m trying William Curtis approach of following no carb diet and intermittent fasting. From my research it works but requires high discipline and strict schedule. once you’re out of ketosis you crash. You can watch his YouTube videos. Search for William Curtis Parkinson’s.
Thank you. I will look and watch the videos.
Amantadine 100mg, 1x/day worked well for me andyskinesia. both while taking rytary and crexmont when it be came available
Good to know, thank you. No side effects with the amantadine?
none that i can point to, then again, everyone with PD reacts differently to drugs
Very true
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