Has anybody had dyskinesia symptoms from ... - Cure Parkinson's

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Has anybody had dyskinesia symptoms from Sinemet?

checkmat profile image
19 Replies

I wanted to get a better understanding of first the conditions one got the dyskinesia symptoms. What was the dosage of Sinemet (or other Carbidupa/Levidupa based med). How long were you on this dosage before experiencing symptoms?

Also I wanted to get a better understanding of the symptoms? Are they frustrating to deal with?

About me, I have kept my dosing pretty small of Sinemet since going on it in 2/2020. Currently it is 100mg/day (1 tablet in early morning). I have tremor predominant PD. I wanted to keep this dose small because I don't want to get dyskinesia. The way I understand it from my Neurologist, is if the dose is higher (whatever that means), then anywhere from 3-7 years one can expect these symptoms to occur.

So now my tremors are getting worse, and my driving is starting to be affected with right foot tremors. I need to make a choice soon as to if or when I increase my Sinemet dosage, or go off it completely. I don't know for sure how much is needed, but when I have gone up (tried 600mg/day, 6 100mg tablets) my right hand tremor did not go away, left hand slightly improved. Doctor said it is completely possible that tremors will not go away with any dosage. If that would the case here, and I have no movement issues to speak of, then why would I want to load up on Sinemet if it's not doing a lot of good, and down the road there is dyskineia? I wouldn't want to do this.

Hope this isn't too confusing, need more information, thanks.

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checkmat
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19 Replies
jeffreyn profile image
jeffreyn

"The way I understand it from my Neurologist, is if the dose is higher (whatever that means), then anywhere from 3-7 years one can expect these symptoms to occur."

My understanding is different. I believe that the occurrence of dyskinesia is governed by two factors: the size of your dose of Sinemet; and the number of live neurons left in your substantia nigra.

There is no point in me telling you what the size of my dose was when I experienced dyskinesia, because you don't know how many neurons I had left.

Every PwP is unique.

jeffreyn profile image
jeffreyn

If I have understood you correctly, you experience tremor on both sides of your body, and Sinemet does not improve the tremor. This seems to indicate that you might have Essential Tremor rather than Parkinson's Disease. Is your neurologist a movement disorder specialist?

Also, you said you tried increasing the Sinemet dose from 100 mg per day to 600 mg per day. How many days were you on 600 mg?

Beanie57 profile image
Beanie57 in reply to jeffreyn

So are you saying that your understanding is Parkinson's tremor should only be one side of the body?

MBAnderson profile image
MBAnderson in reply to Beanie57

It is very common for PD tremor to take up residency on both sides.

jeffreyn profile image
jeffreyn in reply to Beanie57

My understanding (from research papers, forum comments etc.) is that PD most commonly starts on one side of the body and after some time "spreads" to the other side. I should have asked ckeckmat if this was the case with him.

MBAnderson profile image
MBAnderson

"Doctor said it is completely possible that tremors will not go away with any dosage. If that would the case here, and I have no movement issues to speak of, then why would I want to load up on Sinemet if it's not doing a lot of good, and down the road there is dyskinesia?"

Why, indeed?

Many PD scientists and Motion Disorder Specialist (MDS) believe that around 800 mg per day of carbidopa/levodopa is a threshold above which the risk of dyskinesia increases, but there is not good data on this.

Any PWP can get dyskinesia from any dose of levodopa over any period. (There are many studies which conclude that even a low dose of carbidopa/levodopa can, by itself, induce dyskinesia. (To some PWP, dyskinesia is the preferable choice.) There are comments on this forum from people who got dyskinesia after a few weeks and some within 15 minutes from their very first, minimum dose.

Esperanto profile image
Esperanto

I understand your anxiety about dyskinesia. Difficult to strike a balance with the benefit of dosing the C/L medication on the one hand and the side effects on the other. Creating an optimal situation for maximum absorption and action of the levodopa can limit usage somewhat. This is hard work. We all know it, Avoid stress, exercise a lot, eat well at the right times, get enough rest, relax and enjoy life. But from my own experience, first the dietary supplements that actually eliminate identified deficiencies and cooperate in the process of levodopa absorption and dopamine production must be ensured. By correcting a severe vitamin B6 deficiency, my daily C/L has more than halved to a reasonable 50/350 and many of my PD symptoms have been reduced. But also my tremor is still abundant. Moreover, I indeed have a combination of ET essential tremor and PD tremor. Contrary to what is often claimed about it, the correlation is indeed there. ncbi.nlm.nih.gov/pmc/articl...

🍀

kgold profile image
kgold in reply to Esperanto

I think my husband also has both types of tremors and his original MDS also believed that was possible. Do you take anything specifically for the ET?

Esperanto profile image
Esperanto in reply to kgold

My neurologist is going to suggest a medication with better pain management of my neuropathy that would have a positive effect on my ET. I will let you know if that has any good experiences.

checkmat profile image
checkmat in reply to Esperanto

The very first tremor I saw was an ET in my left hand when drinking out of a glass, this was 1/2 year before the very first resting tremor in my right arm. This back in 2/2018. Since then my resting tremors are solidly in both left and right arms, and left leg, a little in right leg.

Tremors are my biggest issue. I don't fall, but my balance is affected. Emotions are tricky to deal with, I don't have a care partner being divorced. I have been going to counselor's for a year and that has helped me cope better with my emotions, but they can run wild and I can dwell on things more than before my PD. I can now see that and can stop obsessing, but the brain plays funny tricks on you.

I exercise 20+ hours a week, biking and walking. This keeps my spirits up. I take supplements: B-12, folic acid, ginko baluba, multi, L-Tyrosine, magnesium. I've tried CBD, and pot but not taking either now. I have migrated to 1 (25-100) Sinemet in the early morning. I don't feel the benefits when taking it all except for early morning. If I take it around 5AM and fall back asleep (I typically go in 1-2 hours sleeps through the night), when I wake there are no tremors, nirvana! This lasts usually 7-8AM.

As a side, I can also stop my tremors when I do breath counting meditation. Not all the time mind you, and if I can't stop them and relax, I get up and say oh well not this time. But the meditation does help me, and gives me needed grounding. I also take Tai Chi, and a Parkinson's exercise class, and I'm in a one a month support group.

The last couple of days I have reduced my Sinemet in the morning to 1/2 tablet (50mg of levadupa) along with a mucuna (1000mg, 20% purity (200mg)). I get the same pieceful effect waking up as when taking 1 tablet (25-100). Its nicer to start the day relaxing than being in the grips of bad tremors.

My MDS doctor wants me to crank up the Sinemet with the idea that it will lessen the tremors. I have been reluctant to do this because I noticed initially my meditation seemed to get harder, then after learning more about the medication, I wanted to minimize or get off of it. I have stopped before, but right now I am taking it in the morning. My MDS is frustrated with me for sure. I saw another MDS and he gave me the advice that when the tremors get to be too much, then start increasing the Sinemet, this is what I said last week to my current MDS and he doesn't get it. My MDS doesn't like the fact I take the med once a day, he said this creates a bump of medication, and I should be taking 3-4 times daily to create an "average". I never have heard this before. So yesterday I took a second 1/2 tablet of Sinemet and mucuna in the afternoon. So for the day yesterday it 1 tablet of Sinemet.

When my tremors were to move into my right foot was going to be a benchmark, because this affects my driving, especially on the freeway. Last week was stressful with tasks to do and people to see, and indeed I had problems driving. Hence my trying to get a better idea of what I am getting into if (or more than likely when) I raise my dosage.

Esperanto profile image
Esperanto in reply to checkmat

“My MDS doesn't like the fact I take the med once a day, he said this creates a bump of medication, and I should be taking 3-4 times daily to create an "average". I never have heard this before” 

Nevertheless, it is indeed common to have an even distribution of levodopa throughout the day. You may be able to do that with half-doses. On HU, 25/100 is widely used. In France, however, mostly 10/100 Sinemet with less carbidopa. My new rather reduced schedule: Morning at 10am and afternoon 3pm >10/100. Evening 9pm >25/100 to bridge the night and early morning.

Perhaps more balance throughout the day will help prevent dips and you can continue driving for a long time 🤞

ddmagee1 profile image
ddmagee1

My Doc prescribed Sinemet, 2 tablets, three times a day, and also prescribed Propanolol for my resting tremors, and that has helped calm them down, so that I reasonably deal with only a small tremor, now!

checkmat profile image
checkmat in reply to ddmagee1

Is the Sinemet 25-100mg, so you are taking 200mg 3 times daily? The propanolol actually is for ET's, action tremors, that is interesting that it helps your resting tremors.

Godiv profile image
Godiv

Hi checkmat. Like people are saying, everyone is different. For some reason I was sick of it more as in timing. Maybe that’s just what I was told. But you know like five years in some thing like that sometime sooner sometimes later. Of course dosage factors in. Like you said.

And of course disease progression. It’s really tough. But they do have some medications for dyskinesia if you ever have to deal with it. Also, sometimes dyskinesia means you’re taking too much so that’s something to keep in mind.

If you do experience dyskinesia, I think your exercise schedule will help.

To be crude, it’s all a bit of a crapshoot.:(

ddmagee1 profile image
ddmagee1

I do have both types of tremors, and the medicines help a lot!

Trusam2913 profile image
Trusam2913

Morning All, I am 78years and have been diagnosed with PDfor 13 years and been taking sinemet for most of that time.( 25/125 3 times per day) my PD is mostly tremor, initially r side hand but then to both.

For the past 2 years sinemet increased to 1 and half tabs and upped to four times per day. Never really made much difference to my tremor. Dyskinesia started so dropped the last dose of sinemet, this helped.Then my movement specialist put me on piribedil low dose, 20mg 3/ day then increased to50mg 3/day. Tremors stopped wonderful. Reduced my sinemet to 3/ day still no tremor . Exercise definitely helps .

Meg024 profile image
Meg024

I totally understand your reluctance to go to higher doses of Sinemet. I take mucuna seed powder as a more beneficial source of levodopa. I take a heaped tsp of the raw powder (not to be confused with l-dopa extract from mucuna) along with 100 mg sinemet which is a Carbidopa/Levodopa compound. I need the carbidopa that I get from C/L for better absorption of the levodopa into the brain, otherwise I would do fine without Sinemet. The advantages of Mucuna are many: takes effect faster, lasts for a longer ON period, causes less dyskinesia, and it tails off more gradually.

M-o-ggy profile image
M-o-ggy

would you be willing to share where you get your mucuna seed powder from

M-o-ggy profile image
M-o-ggy

Hi there. On another site I follow, a poster said that tremor is caused by low B1 and possibly Folate. I can’t vouch for this but perhaps you would like to do your own research this yourself

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