[Radioguy]

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!

[Ronhutton]

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

[Radioguy]

Originally Posted by Ronhutton

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!

[stevem53]

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

[one n dona]

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

[boann]

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.)

[reverett123]

A question: Is anyone BOTH taking fish oil and dealing with dyskenisias?

1: Ann Neurol. 2006 Feb;59(2):282-8.

Docosahexaenoic acid reduces levodopa-induced dyskinesias in
1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine monkeys.

Samadi P, Gregoire L, Rouillard C, Bedard PJ, Di Paolo T, Levesque D.

Centre de recherche en Neurosciences, Centre Hospitalier Universitaire de Quebec
(CHUQ), Ste-Foy, Quebec, Canada.

OBJECTIVE: The objective of the present study was to investigate the effect of
docosahexaenoic acid (DHA), a polyunsaturated fatty acid (omega-3), on
levodopa-induced dyskinesias (LIDs) in parkinsonian
1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP)-treated monkeys. METHODS: We
explored the effect of DHA in two paradigms. First, a group of MPTP monkeys was
primed with levodopa for several months before introducing DHA. A second group
of MPTP monkeys (de novo) was exposed to DHA before levodopa therapy. RESULTS:
DHA administration reduced LIDs in both paradigms without alteration of the
anti-parkinsonian effect of levodopa indicating that DHA can reduce the severity
or delay the development of LIDs in a nonhuman primate model of Parkinson's
disease. INTERPRETATION: These results suggest that DHA can reduce the severity
or delay the development of LIDs in a nonhuman primate model of Parkinson's
disease. DHA may represent a new approach to improve the quality of life of
Parkinson's disease patients.

PMID: 16437566 [PubMed - indexed for MEDLINE]

[steffi 001]

...the spelling doesn`t matter...it is terrific....the way you`ve explained what is happening to your hubby. Thank you.

Radioguy...?
10 years with PD
approx 4 years on Sinemet Plus and Sinemet CR plus the rest....blah blah

I have noticed within the last few months that the repetitive [although small]
movements,that at first seemed harmless...have not gone away.

a] When sitting my right foot sort of beats a steady rhythm...
b] A slight quivering of the mouth when pausing between speech. [not all the time]
c] Have found myself gently rocking backwards and forwards [like you do when you are rocking a baby]

No-one else has pointed these things out but my guess is that others HAVE noticed but are too polite to say anything...or don`t know how to approach the subject.

Incidentally,have just read about the benefits of Vitamin E in alleviating drug induced dyskenesia but hey...disclaimer here.....not getting drawn into any arguments about "suggesting" alternative therapy.

Just think its important to drop "pointers" and folk can read up for themselves...
Thanks for the "fish oil" info. This was the first type of alt. medicine a kinesiologist put me on. Must start taking it again.

x

[Aeolusblue]

Everything I read says psychiatric drugs can cause permanent brain damage and tardic dyskenesia (movement disorders) among other serious problems. But doctors love to prescribe them.

If you are taking drugs for emotional problems, I would recommend psychotherapy (talk therapy) over the use of drugs.

I would never take a psychiatric drug.

[Teretxu]

Originally Posted by Aeolusblue

Everything I read says psychiatric drugs can cause permanent brain damage and tardic dyskenesia (movement disorders) among other serious problems. But doctors love to prescribe them.

If you are taking drugs for emotional problems, I would recommend psychotherapy (talk therapy) over the use of drugs.

I would never take a psychiatric drug.

Aeolosblue, I'm not sure you have proper information of what PD is and what it does to you as it progresses. You would never take a psychiatric drug? Well, maybe you should define what a psychiatric drug is to you. I believe everything from Valium to muscle relaxants and prescription sleep aids are psychiatric drugs, and believe me, everybody who's had PD for more than 10 years will need one or the other, whether or not.
I hate to take all the meds I'm taking, but without them I would not be able to sleep, talk, walk, eat or even breath. The choice is simple, ain't it?