IS DYSKINESIA PART OF PD?

[OREOLU]

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.

[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 in reply to park_bear]

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

[park_bear in reply to OREOLU]

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

[Juliegrace in reply to park_bear]

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

[park_bear in reply to Juliegrace]

Oh OK. For sure dyskinesia and not tremor?

[Juliegrace in reply to park_bear]

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

[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 in reply to mistydog1]

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 in reply to ConnieD]

Hey you!

How’s things ?

[ConnieD in reply to Cbgs]

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

[mistydog1 in reply to ConnieD]

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

[ConnieD in reply to mistydog1]

1 capsule each time?

[OREOLU in reply to mistydog1]

Hi,how many capsule?

[JAS9 in reply to ConnieD]

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 in reply to mistydog1]

Seriously considering Rytary.

[mistydog1 in reply to OREOLU]

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

[Hidden]

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 in reply to Hidden]

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.

[Hidden in reply to OREOLU]

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 in reply to Hidden]

Have you ever experienced dyskinesia?

[Hidden in reply to OREOLU]

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 in reply to Hidden]

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

[Hidden in reply to OREOLU]

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 in reply to Hidden]

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

[Hidden in reply to OREOLU]

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

[OREOLU in reply to Hidden]

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

[Hidden in reply to OREOLU]

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 in reply to Hidden]

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 in reply to OREOLU]

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 in reply to OREOLU]

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]

I added amantadine to lessen the dyskinesia

It has helped

[OREOLU in reply to Cbgs]

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

[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 in reply to JohnPepper]

Hi John, already doing fast walking.Thanks.

[JohnPepper in reply to OREOLU]

How is it helping you?

[Parkiewife]

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

[OREOLU in reply to Parkiewife]

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]

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 in reply to mistydog1]

Hi mistydod1,

what did you switch to?

[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]

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

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

Art

[PDGal4 in reply to chartist]

Thank you for all these links.

[Erniediaz1018]

B1 (hdt) stops dyskinesia for me.

[Hidden]

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 in reply to Hidden]

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

[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