IS DYSKINESIA PART OF PD?: Hi friends... - Cure Parkinson's

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IS DYSKINESIA PART OF PD?

OREOLU profile image
46 Replies

Hi friends.

Kindly help with your replies.I recently saw my Neurologist,and he wanted me to increase my dose of sinemet from 1&1/4 to two tabs 4x daily,but I am kind of reluctant most especially due to dyskinesia. My MD seem unhappy with me and told me that dyskinesia is part of PD,that once you have PD,you cannot avoid having dyskinesia. So has any pwp on this forum who has PD for 2 & 1/2 years been able to avoid any form of dykinesia? I have also read online that some pwp,using C/L does not get dyskinesia.

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OREOLU
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46 Replies
park_bear profile image
park_bear

Are you already experiencing dyskinesia and your MD wants to increase your Sinemet?

Could you give us more detail about your symptoms and dyskinesia?

OREOLU profile image
OREOLU in reply topark_bear

Yes,I have been experiencing some wearing off dyskinesia, the head bobble "No" gesture type.

park_bear profile image
park_bear in reply toOREOLU

Now I am confused because dyskinesia usually appears soon after taking a dose rather than upon wearing off.

Juliegrace profile image
Juliegrace in reply topark_bear

It can also happen in the wearing off phase. That is usually when mine is the worst.

park_bear profile image
park_bear in reply toJuliegrace

Oh OK. For sure dyskinesia and not tremor?

Juliegrace profile image
Juliegrace in reply topark_bear

I have no tremor. It is definitely dyskinesia. I have every phase of dyskinesia.

mistydog1 profile image
mistydog1

I've had a diagnosis Pk for 8 years now. I too was having the same problem painful dyskinesia while on Sinemet after 2 years. My neurologist switched me to Rytary with Azilect and I have been fine.

ConnieD profile image
ConnieD in reply tomistydog1

May I ask what your dosage of Rytary is, I’ve had PD for 8 yrs and have dyskinesia whether on Sinemet or Rytary. I’ve thought about trying Rytary again and wonder if I was taking too much. I know we are all different.

Thank you

Cbgs profile image
Cbgs in reply toConnieD

Hey you!

How’s things ?

ConnieD profile image
ConnieD in reply toCbgs

Hey there! I was thinking of you! Not sleeping, lol How are you? We need to catch up😊

mistydog1 profile image
mistydog1 in reply toConnieD

Hi Connie I take 25mg/145mg 4X a day

ConnieD profile image
ConnieD in reply tomistydog1

1 capsule each time?

OREOLU profile image
OREOLU in reply tomistydog1

Hi,how many capsule?

JAS9 profile image
JAS9 in reply toConnieD

Just to add another data point to the conversation, I've taken Rytary for 4 years. I know that switching between Sinemet and Rytary can be tricky due to how Rytary spreads its release out over time and therefore where it is in your digestive tract when it does.

I switched from Rytary to Sinemet for a few months then back again, and my neuro's calculations were way off. If I did it again, I would go slowly and change half of my dose at a time. The guidelines they use are big guesses based on how it works for other people.

OREOLU profile image
OREOLU in reply tomistydog1

Seriously considering Rytary.

mistydog1 profile image
mistydog1 in reply toOREOLU

Hi OREOLU I take one capsule every 4 hours for a total of 4 per day 25mg/145mg

C/L can help you to move better, and in the end it is your decision whether you would rather move better with dyskinesias or move worse without dyskinesia...

That said, the increased dosage he is recommended may allow you to move better WITHOUT any dyskinesias... (the disease may not have progressed in you such that dyskinesias would be triggered with the new dosage)

It doesn't hurt to try it... But I encourage you to endeavor to take responsibility to find the minimum optimum dose... that balances the symptoms for YOUR best quality of life... I don't think the doctor can decide this for you... but he can provide advice on how to adjust the dosage safely...

Btw, did you decide against Rytary?

OREOLU profile image
OREOLU in reply to

Hi, still considering Rytary as well.MD suggested I should increase my dose of C/L first and see if the dyskinesia will disappear.He is of the opinion that dyskinesia is a symptom of PD,and it is not the drug.

in reply toOREOLU

I thought the most common type of dyskinesia is the "peak" variety (occurs at peaks in levodopa concentration)... and I think this will get worse if your increase your dose. Maybe he wants to see if it gets worse, so he knows it's indeed peak dyskinesia (and not "off-time" dyskinesia which I think typically manifests itself as dystonia)...

Also, I think dyskinesia is a symptom of the progression of the disease... but it is only made real through the use of levodopa... So it is a matter of perspective... His perspective, and that of most doctors, is that levodopa does not cause the progression of PD, so it could be misleading for them to say that levodopa causes dyskinesia...

OREOLU profile image
OREOLU in reply to

Have you ever experienced dyskinesia?

in reply toOREOLU

yes, in the form of my right hand involuntarily moving in a spasm-like manner, and sometimes the same thing happens in my right foot... in my case, I believe this typically occurs when I am over medicated (i.e., the peak variety)...

OREOLU profile image
OREOLU in reply to

Do you then have to decrease your dose for the dyskinesia to go away?

in reply toOREOLU

Yes, I have to decrease my dose.

That is the simple answer...

The more complicated way of putting it is I have to reduce the peak blood concentration of levodopa which is a function of the levodopa dose amount, the formulation (instantaneous vs controlled/extended release), the inter-dose interval, ....

OREOLU profile image
OREOLU in reply to

What is the dose of Rytary that you take,without having dyskinesia?

in reply toOREOLU

I presume you meant to ask JAS9 this question? (for I am not taking currently taking Rytary)

OREOLU profile image
OREOLU in reply to

Oh I see.I meant to ask you.How many C/L tablets are you taking,which does not give you dyskinesia?

in reply toOREOLU

I am not currently taking C/L IR (but rather C/L CR 200 mg tabs w/entacapone), and I have not been able to reduce my doses such that I am dyskinesia free in all 3 dose intervals (of 4 hrs), without sacrificing my ability to move well... (anyway as far as dyskinesias are concerned my dose interval #1 is great, #2 is good, and #3 is just OK)

OREOLU profile image
OREOLU in reply to

So, you are not completely free of dysinesia. Maybe that was exactly what my MD was trying to tell me. You cannot have one without the other,unless you opt for DBS,which is what is used to eliminate dyskinesia. Thanks for your time.Lol.

chartist profile image
chartist in reply toOREOLU

OREOLU,

On a related note, the following study draws a correlation between low chloride and sodium serum levels in relation to dyskinesia:

ncbi.nlm.nih.gov/pmc/articl...

Perhaps your doctor can also test your chloride and sodium levels to see if they are the reason for or contributing factors to the dyskinesia.

Art

JAS9 profile image
JAS9 in reply toOREOLU

It sounds to me like there's confusion between whether you are having PD symptoms or dyskinesia. Having experienced both, the easiest way to tell (other than timing) is the movement's strength. If it's a light fluttery movement it's PD, but if there's strength behind it it's dyskinesia. The exception to this is that PD tremor can get more forceful under stress.

Cbgs profile image
Cbgs

I added amantadine to lessen the dyskinesia

It has helped

OREOLU profile image
OREOLU in reply toCbgs

Thanks,MD does not want to add a new drug yet.

JohnPepper profile image
JohnPepper

No! It is caused by Levodopa Medication. If you insist on taking levodopa then try to reduce the quantitu you take until the dyskinesia disappears. Try doing fast walking, for a very short time to begin with and build it up slowly, while you slowly reduce you levodopa.

OREOLU profile image
OREOLU in reply toJohnPepper

Hi John, already doing fast walking.Thanks.

JohnPepper profile image
JohnPepper in reply toOREOLU

How is it helping you?

Parkiewife profile image
Parkiewife

Interesting. Has your neurologist recommended DBS (deep brain stimulation) surgery?

OREOLU profile image
OREOLU in reply toParkiewife

Hi,Parkiewife. MD,wants me to deal with the dyskinesia,because he does not think it is severe enough for me to consider DBS.

mistydog1 profile image
mistydog1

In my case with the Sinemet was I started at a low dose . Then once the dyskinesia started my neurologist increase the dose but dyskinesia just got worse so the decision was made to switch.

OREOLU profile image
OREOLU in reply tomistydog1

Hi mistydod1,

what did you switch to?

chartist profile image
chartist

It appears that in some patients, the dose of levodopa may have an effect on Dyskinesia as mentioned in this new and short abstract :

ncbi.nlm.nih.gov/pubmed/314...

Art

chartist profile image
chartist

This new abstract suggests that dystonia and dyskinesia may have multiple commonalities in PD :

ncbi.nlm.nih.gov/pubmed/314...

Art

PDGal4 profile image
PDGal4 in reply tochartist

Thank you for all these links.

Erniediaz1018 profile image
Erniediaz1018

B1 (hdt) stops dyskinesia for me.

Interesting Stuff...

"Involuntary movements in Parkinson’s disease: not always what it seems"

n.neurology.org/content/sup...

Click on the link at "Teaching Slides - PowerPoint Presentation"

YOParky profile image
YOParky in reply to

Interesting...hmm I wonder why that article was removed 🤔🙄

grandmama16 profile image
grandmama16

We are going to hubby's PD support group tonight. Maybe I'll get info on that. He does not have it but has kept Sinemet low...1 in AM, 1 in PM, 25/100, And a Resigiline I think....he keeps changing his mind on that. He gets sleepy during the day and has had hillucinations. I asked him the other day while watching T.V. when his hands were moving and he said he was rolling up the hose. Maybe he was half asleep. We're mid 70's and both just aren't interested in much anymore. I have Fibromyalgia and my Dr. is good on trying different meds. but his Nuerologist or MD isn't. His feet swell but Dr. didn't even note that.

Good luck. M.A. in USA

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