Would you mind sharing a little info?

When did you first notice it? How long had you been taking levodopa when it started? Was it a subtle onset? What were your first signs?

Back before I stopped taking meds (I'm back on, now...) I noticed my lip was starting to do something of an Elvis sneer from time to time. I decided to deal with the symptoms instead of the sneer.

Thanks in advance!

Hi Radioguy,
I have had PD for around 16 years now. In the years up to the 10th year, I was not bothered with dyskinesia. However, it became more of a problem in the subsequent years, 10 to 16, and now I get it with every dose of sinemet. It is a side effect of the levodopa, not a disease in its own right.
The only way to stop it is to cut down your sinemet, if you can cope with this. It generally makes me unable to write, or do any intricate work, and usually occurs at the peak levodopa concentration in the blood.
A strange thing I experience, is every time I sit down for a meal, as soon as I start eating, I get very bad dyskinesia. I have asked the forum whether anyone else gets this, but no confirmation.
I used to take Amantadine to calm down the movement, and it definitely helps. However I am on a new doc now, who has changed my meds, and cut out amantadine. and I am getting less dyskinesia now, but it is still a problem,
Hope this helps
Ron

Thanks! I appreciate the reply, but I do understand what dyskinesia is... I'm just wondering what it was like when you first started to notice it... did it come on gradually? Did someone notice it before you did? That kinda thing.

But thanks again!

I was researching Sinamet the other day and dyskenisia is listed as a rare side effect..How rare is it?..I was under the impression that everyone who is on high doses of Sinamet gets it eventually

Steve

hubbys was very slow in coming and only noticeable in the begining if it was time for his meds. As the years have and amount of drugs in his systen has increased he has severe dyskinises when taking too much sinemett since he takes both reg and cr if he takes too much of either one trying to combat some of the other symptoms his body just cant handle all the dope. He walks better and talks better but when standing still weaves and does't dare hold a glass of anything in his hands when this happens but when he slows back on them than it virtually disappears so in my humble opinion it is how your body tolerts the sinemmett and at what doeses and I'm with steve I've talked to very few people expect the newly dx who dont have it at some point and the ones I've talked to (but not all( found it creeping up so slowly that other people noticed it before than but leave it to others to point out great stuff lol take care and hope to talk soon hope this helps a bit think its time i learned how to use the spell checker lol is ther one

just happened to have these handy:

LEVODOPA STATS

Young Onset and Levodopa Side Effects

Quinn N, Movement Disorders, Vol 2, No 2, pp. 73-91, 1987 showed the following regarding young onset (under 40) and l-dopa :

20% chance of dyskinesias within one month on l-dopa
55% chance within one year
74% chance within four years (at 2 year mark, 50% of dyskinesias classified as “often causing functional disability”)
100% chance within six years
and
10% chance of on/off fluctuations within one month on l-dopa
38% chance within one year
50% chance within 2-3 years
96% chance within 6 years

Wagner ML, Complications of disease and therapy: a comparison of younger and older patients with Parkinson's disease. Ann Clin Lab Sci. 1996 Sep-Oct;26(5):389-95:

“165 patient records were divided according to patient age into two groups ("younger," 41 to 64, and "elderly," > or = 65 years) and reviewed for the incidence of dyskinesias, fluctuations, freezing, psychosis, … Younger patients had a greater incidence of chorea (75.8 percent vs 49.5 percent), dystonia (82.3 percent vs 49.0 percent), fluctuations (90.1 percent vs 68.1 percent)…
[unfortunately, this abstract does not provide the length of time participants had been on l-dopa]

Shrag A. Young-onset Parkinson's disease revisited--clinical features, natural history, and mortality. Mov Disord. 1998 Nov;13(6):885-94:

“After a disease duration of 10 years or less, only 5% of patients were experiencing falls and 30% freezing, but all patients had developed L-dopa-related fluctuations and dyskinesias.”

Any Age Onset and Levodopa Side Effects

Friedman A. Levodopa-induced dyskinesia: clinical observations, Journal of Neurology, 1985;232(1):29-31:

“Levodopa-induced dyskinesia was observed in 92 patients (64%)…The age at onset of the disease of patients with dyskinesia was significantly different from the age at onset of those without dyskinesia, the means being 54.8 and 68.9 years respectively…The influence of the duration of levodopa treatment on the manifestation of dyskinesia could not be confirmed because this side-effect usually appeared during the first year of treatment.”
[again, unfortunately, no timeframe in the abstract]

Chase, TN. Drugs 1998;55 Suppl 1:1-9

Most common are the motor response complications that appear within a few years of treatment initiation and ultimately affect most parkinsonian patients. These progressively disabling complications include response fluctuations and abnormal involuntary movements.

Kumar N, Movement Disorders, Vol 20, No 3, pp 342-366, 2005 found that within 5 years, onset at age:

40-49 - 40% chance of developing dyskinesias
50-59 - 53% chance
60-69 - 26% chance
70-79 - 16% chance
80-89 - 14% chance

In the 2004 article entitled “Levodopa in the Treatment of PD: Current Controversies,” a team of researchers led by Warren Olanow states that motor fluctuations occur in approximately 50 - 80% of PD patients who have received l-dopa for more than 5 to 10 years, which is a bit ambiguous.

In May 2005, Olanow made a presentation as part of a Continuing Medical Education event called “Spotlight on Parkinson’s” in which he was considerably less ambiguous, saying “motor complications affect approximately 80% of patients treated with levodopa for > 5 years” and “develop in approximately 100% of young-onset PD patients.”’

Dr. Kapil Sethi cites a 1997 study by John Nutt published in the Annals of Neurology (for which i could not figure out how to gain access) in his presentation at the same Continuing Medical Education event saying that “a majority of patients develop motor fluctuations even during the first year of therapy,” and, from the DATATOP trial, “wearing-off has been reported in 50% of patient within two years of L-dopa therapy.”

At each juncture, it is as if these side effects have only recently emerged:

1977
with respect to long-term levodopa therapy, two problems "...have emerged as frequent and serious, an insidious and progressive loss of benefit and the appearance of progessively more severe fluctuations in disability....Discovery of the exact causes for loss of benefit may provide a rational basis for new therapy."

1989
"Management of Parkinson's disease has in recent years become more difficult than in the early years of levodopa therapy, due to the loss of benefit and the many late problems, especially fluctuations in disability. New therapeutic strategies are therefore needed in the treatment of patients."

2005
"...motor complications of chronic levodopa therapy have emerged as a major limitation of this otherwise effective therapy"

Almost 40 years ago they “have emerged.”

That is Warren Olanow calling levodopa "otherwise effective.” I guess he must be referring to the 50% of patients who get a whole two years and possibly slightly more of "otherwise effective"ness," but not much, because by the 5 year mark, maximum 20% will still be experiencing "otherwise effective"ness and for some reason, 5 years is as far out as he goes (not very reassuring for us 42 year-olds.)

Ron-
My name is Keith. I am a "very young" 50 yrs old, and have had PD for appox. 17 yrs. I have the same reaction to sitting down at the table to eat. But I notice the same reaction to sitting down to do any "detail" type work (i.e. writing, working on the computer,etc.)

I hope this is of some help.
Keith
e-mail: kk13@verizon.net

Keith,
Thanks so much for your reply, and welcome to our forum. You are the first person to confirm that eating or sitting down and concentrating on doing something, brings on dyskinesia. I agree the latter can also do it. I am Chairman of the Social Club of my ex employer, and it starts as regularly as the meetings!! As soon as I sit down and start the meeting, I start flailing about.
I have done literature searches to try and find if anyone has found an effective way of fdealing with it, but no luck.
Thanks again.
Ron

Ron,
We can't be the only two lucky ones to have this response, can we?! On a serious note, my MDS recommended taking half a xanax or other "relaxant." I've only tried it a couple of times with minimal success. But maybe you'll do better with it. I'm not pushing any drugs on you, but since you're already sitting at a "Social Club" meeting...!!! (Just joking, of course). Let me know how things go.
Nice meeting you from across the pond,
Keith

Yes I experienced having sudden onset dyskinesia when I sat down to eat and it annoyed me so much I tried a few alternative ploys to block whatever the signal was that was setting it off. I noted that if it had been more than 2 hours since I last put something in my mouth I was sure to get it, and so I started eating a piece of toast or an apple before dinner, If we ate late dinner (anytime after about 6:30) I almost surely would get dyskinetic. My next ploy was to not sit down, but eat dinner at the kitchen counter...that worked too. I think your brain becomes more sensitive to the drugs when your stomach is empty and there is no other toys in your blood stream for the little dyskinesia bugs to play with.

I rarely have the problem, but then I don't sit down for dinner much any more either. I just eat as I go...nibble all day.

I have had PD for 10 years and don't have very much of a problem with dyskinesia and I take alot of sinemet (10X 25/100 cr) per day. I will run into problems when 1.) I need something in my system in the way of real food ...ie:not a candy bar, 2.) if I over do my medication -take my pill even 15 minutes early to get the jump on whatever it is I'm wanting to do (usually eat dinner), or 3.) I get stressed about something. The yellow regular sinemet is the worst for dykinesia in my case. I call them the Yellow Devils. I only take one, or part of one when I've burned up my allotment or can't get them to kick in.

After 10 years I've become a master at manipulating my drugs. I'm so clever I ended up in emergency twice!!! So I don't recommend any of what I said, I'm just letting you know what I do and you can make your own choices and design your own alternatives.

Still laughing after all these years.....