Carbadopa/Levadopa: I am currently taking... - Cure Parkinson's

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Carbadopa/Levadopa

Smittybear7 profile image
22 Replies

I am currently taking 1 pill three times a day of Carbidopa levodopa. I'm experiencing some dyskinesia. How do I cut back on the levodopa-carbidopa to eliminate the dyskinesia? Thanks for your help

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Smittybear7
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22 Replies
reedboat2 profile image
reedboat2

3 Sinemet per day is a low dose. You must be pretty sensitive to C/L. You could try breaking the tablets in half and supplement with Mucuna. I don’t know much about Agonists but maybe that could be something to try. Sorry I’m not much help. I would definitely speak with your Neurologist about possible alternatives to C/L

lbrussell profile image
lbrussell

I have recently been having the same problem. The dyskinesia is very mild. Just wiggly legs and an occasional bit of head bobbing. Have been taking 3 Sinemet per day, 5 hours apart for about 2 years. Changed it to 1/2 tablet, 4 times a day, 4 hours apart. Dyskinesia completely gone immediately. Only downside has been a tiny bit of loss of manual dexterity, like worse handwriting, less arm swing or trouble flossing my teeth on some days. Perhaps a 10% reduction in hand dexterity. Trying to decide which is worse, dyskinesia or less handiness. Looking forward to my next doc appointment to see if I can strike a better balance. Good luck.

lbrussell profile image
lbrussell in reply tolbrussell

Also... I wondered if perhaps my vitamin B1 supplements in conjunction with the Sinemet was causing the dykinesia. Stopped taking the B1 about 3 months ago. Now as an experiment I'm bumping up to a full Sinemet on some days. So far, so good. No wiggles. Will increase slowly to see how it goes.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Which does did you bump up? When do you take your medication? Do you take any supplements?Thanks for your help!

lbrussell profile image
lbrussell in reply toSmittybear7

Last week I started increasing my Sinemet to a full tablet a couple times a day and half on other times. Slowly increasing to see if dyskinesia comes back. I currently take my Sinemet every 4 hours as mentioned above, but stretch it out to 5 if taking full tablet. I take several supplements, all as recommended by Dr Mischley, all based on my blood and hair analysis.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

If you are taking a pill every 4hrs you would be taking pills a day?? I'm really confused could you break it down for me. I apologize for not understanding how you are doing your dosage and I really need some guidance. It sounds like we're having similar issues. Thanks so much for your help and patience.

TL500 profile image
TL500 in reply tolbrussell

Do you mean worse hand writing while medication is on?

lbrussell profile image
lbrussell in reply toTL500

Nope. My handwriting gets worse when I am low on Sinemet. A full dose and my handwriting is beautiful. Then when current dose is starting to wear off, it gets smaller again. A half dose and it's back to unreadable, tiny scratch.

TL500 profile image
TL500 in reply tolbrussell

Thanks for your reply

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Thanks let me know what your neurologist says.

TL500 profile image
TL500 in reply tolbrussell

So you take only 2 tabs in total per day?

lbrussell profile image
lbrussell in reply toTL500

As a baseline, yes, four half tabs per day. However, I forgot to mention earlier that if I am going out for a 4 mile power walk or hike or a long bike ride, I will take an extra half or full tablet right before heading out. How much extra I take depends on how intense the workout will be.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Do you take any pills before bed? Do you still drive?

lbrussell profile image
lbrussell in reply toSmittybear7

I do still drive, thankfully. I'll take an extra 1/2 tablet before bed if I feel it is needed.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Thanks for sharing!

TL500 profile image
TL500 in reply tolbrussell

Thanks for your reply.So can be up to 2½ tab per day if you go for power walking that day?

Is it 4 hours apart for each half tab?

lbrussell profile image
lbrussell in reply toTL500

Yes, I could take 2.5 to 3 tablets per day depending on my workouts for the day. Baseline of 1/2 tablet 4 times per day and then add a 1/2 tablet before a hour-long power walk or full tablet before a long or strenuous bicycle ride. This seems to be working fairly well for now, but not perfect. Still experimenting with upping some of those regular doses to a full tablet, but dyskinesia keeps coming back. And, yes, 4 times per day, 4 hours apart.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Do you take the extra pills to increase the dopamine? I thought that causes dyskinesia.How do you know how much to take? I don't know if I am overmedicated or under medicated. I'm afraid is I cut back I will go back to how I was before medication. If I increase the dosage I'm afraid the involuntary movements will get worse. Your thoughts. Thanks

lbrussell profile image
lbrussell in reply toSmittybear7

Yes, I take an extra half or full tablet before a hour-long power walk or intense bike ride in order to get more dopamine. Without that extra dose before a workout my gait and balance are off, my power drops and my movements are just not as fluid. This is only since I cut back my regular daily dosage to half tablets due to mild dyskinesia.

It seems like when I am under-medicated I have all the problems listed above, plus I lose my handwriting.

In the last couple of weeks I have also been experimenting with a full tablet for my mid-day doses, but it seems like if I do that I am over medicated and the dyskinesia comes back.

For me it's not just finding the right dose for daily usage, but also how to power my daily, intense workouts as well.

Good luck.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Thanks I'm really frustrated and don't know where to. begin! I don't want to lose all the progress that I've made by trying to make an adjustment in cutting back or increasing. Any suggestions on how to start? Thanks again for your time and help!

lbrussell profile image
lbrussell in reply toSmittybear7

I know that frustration well. I can't see my doctor until early June, and just didn't want to wait that long for a fix to the dyskinesia problem. For me, the only thing that works is experimentation and tracking diligently. Each time I make an adjustment I write down notes and keep track of dates and effects. Spreadsheets are my friend. I don't feel like I have the answers yet and surely there is an easier way. But, for now, at least experimenting feels like some kind of action. Right direction or wrong, at least I can go back if something doesn't work. Good luck.

Smittybear7 profile image
Smittybear7 in reply tolbrussell

Thanks again for your help information and patience. I hope to keep in touch with you. Let me know how you make out. The dyskinesia that I'm experiencing is tolerable but I wanted to go away. Good luck to you also.

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