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Did anyone get dyskinesia immedietly after starting Sinemet?

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I'm 43 and was diagnosed with YOPD 2 years ago though I was getting fatigue for 2 years before my diagnosis. I was put on Azilect and Mirapex ER (3mg/day) but last March I got off the Mirapex due to some unpleasant side effects. I got on Sinemet 25/100 and was started at 2 pills 3 times a day. IT worked way better than the Mirapex and I really have no complaints, except my right hand, when resting, would flap back at forth at the wrist slightly, which had never happened before. I saw my neuro, who saw it and said it was a tremor because its too early to get dyskinesia. When I reminded him I'd never had a tremor until then he told me maybe the Mirapex had been masking it. I accepted this but after a few months the movements have spread. My head nods forward or back when I talk (sometimes shakes sided to side instead) and my arms bend and unbend at the elbows. It looks like dyskinesia, not tremor. I have dropped the dose to 1 pill four times a day but this causes the PD to come back and I get cramping and stiffness in my arms. When I go back up to 6 a day I feel better but start with what I am now convinced is dyskinesia. While waiting to see my neruo again I wanted to ask you all two questions.

 

1. Did any of you get dyskinesia immedietly upon starting SInemet?

 

2. What did your doctor say to do? Add a comp inhibior? Raise or lower the caribopa to smooth out the dopamine uptake?

 

I APPRECIATE ALL OF YOU BUT PLEASE DONT GIVE ME ADVICE IF YOU HAVE NO EXPERIENCE WITH TREATING SINEMET DYSKINESIA ;)

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Hi....I am 39 yo, diagnosed about 10 months ago with sx for a couple years before that. My MDS started me on Mirapex ER and titrated me up to the max dose of 4.5 mg a day over about 3 months. This alone controlled my PD symptoms for about 4-5 months, but then they started coming back late afternoon and I had some new night time symptoms. So, my MDS started me on Sinemet XL 25/100 in June, and it has helped tremendously! I asked him when he started it what would happen if I developed dyskinesias, and he told me a few things that might help you.....

 

1) He said the XL form of Sinemet has a much less chance of causing dyskinesias than the short acting, because it doesn't have the on/off effect and is dosed only once or twice a day.....so maybe you could ask about changing to the XL form?

 

2) Amantidine can be used to help with dyskinesia

 

3) A low dose, long-acting form of an agonist like Mirapex ER (very low so not to cause side effects) or the Neupro patch can be used to help with dyskinesias

 

I don't know if that helps, but those are the things my MDS discussed with me for if I develop dyskinesias.

Edited by NicoleZ

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I got dyskinesia within the first month of taking 3 doses daily of 25/100. Same as you it sounds only I called it my chicken arm. First tried reducing dose each time to 1/2 a pill which left me off. Then took away Selegiline, added Zonisamide, and most recently added Amantadine. Currently I take between 1/4 and 1/2 a tablet every 1-2 hours as needed to stay on and nominally dyskinetic. It works unless I eat, which pretty much guarantees me 3 or more hours of half on or not on time.

 

Doctor told me that dyskinesia can come at any time and especially those with more advanced disease. As I was not diagnosed until I could barely walk or otherwise function he said he fully expected me to have dyskinesia sooner rather than later.

 

All that said, dyskinesia that I'm experiencing is manageable if I'm careful with food and medication. It doesn't completely vanish but no one else can reslly see it most of the time. It bothers me far less than being unable to move, that's for sure.

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NicoleZ- thanks for the advice. I forgot to say I'm already on sinemet ER. Sorry about that ;). I am planning to add amantadine and will post of that helps.

Edited by DavidTX
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David:

 

It took me about two years to develop dyskinesia. I’ve reduced them by shortening the time between doses and adding Comtan. I take two Carbidopa/Levodops (25/100) & ½ comtan at 7am and one Carbidopa/Levodopa with ½ comtan every two hours after that. My MDS tells me that this is an “unusual” schedule but so far it’s working; although, lately I’ve noticed more off periods when I should be on. This schedule allows me to have only mild dyskinesia (and for a short period) in the morning and I suppose what is comparatively moderate dyskinesia upon wearing off when I stop dosing in the afternoon (5pm), I don’t seem to get any peak dose dyskinesia.

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Ken, do you take extended release Sinemet? Do you get side effects from the Comptan? Why does your MDS say your dosing schedule is unusual? Thanks for your feedback!

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Hi again...was chatting with Doc after my earlier post....he said even if someone had side effects from the moderate dose Mirapex ER, you might want to discuss trying low dose Neupro patch as a good option to help with dyskinesia. Keep us posted on what you try and what helps!

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David:

 

I take generic (Immediate Release) carbidopa/levodopa; I think Sinemet is a copyright name for Merck & Company Inc. Some people say “Sinemet” but actually mean generic carbidopa/levodopa just because it’s easier to say. I’ve never heard anything indicating one is any better or worse than the other. It’s a fine line I’m walking: The Comtan is meant to extend the on time from the carbidopa/levodopa but if I take to much I get pretty bad dyskinesia. That’s why I’m only taking ½ tablet with each carbidopa/levodopa dose. The Comtan has given me ½ an hour more on time without any increase in my wearing off dyskinesia severity (From 1 ½ to 2 hours). I could get the same on time if I increased my carbidopa/levodopa dose to two 25/100 every two hours but than I get pretty severe dyskinesia. The “Unusual” comment from my MDS: She is talking about my starting the day with two 25/100 carbidopa/levodopa with all the following doses for that day being only one 25/100. I think the conventional wisdom is that the on time from that extra tablet should not last me all day. I’ve tried starting the day with one 25/100 and ½ comtan, it does not work; I’ve tried one 25/100 and a whole Comtan, it does not work. Maybe it’s placebo effect; if it is, I don’t care, it works! At this point, I’m willing to stick needles in a doll and sacrifice a couple of chickens if it works. I’m not going to let a silly little thing like conventional wisdom stand in my way.

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Fascinating. As opposed to what Nicole's MDS said, MDS told me that Sinemet ER causes MORE dyskinesias for the young onset patient. In fact, for me that was my experience: made me "jumpy", more dyskinetic (is that a word? Haha) and worsened my insomnia. Odd.

 

At any rate, like KimInJapan I got dyskinesisas about a month after starting Sinemet. And I waited waaaaay to long to start it...

 

Mary

Mary

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have u tried splitting them

and taking halves a feww hrs apart

it works for me

but its tricky to not run out of juice

Scott

I take 3 100s this way

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Hi David,

 

I am 43 now and have had PD for 10 years. I've been on Sinemet all 10 years, but I don't really remember when the dyskinesias started. I have alot of them now...they do get worse the longer one is on Sinemet. Stress also makes them worse. For me, they are part of the medication cycle...not constant and sometimes worse than others... Ironically, I'm beginning a new clinical trial this week for a new medication to address dyskinesias. It's at the Cleveland Clinic. If anyone else is close and would like to be considered, let me know. I can pass along the information. So, maybe some help will be on the way if that medication eventually gets FDA approval...

 

Good luck,

 

Mihai

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Finally, someone else who had an immediate negative reaction to Sinemet. Twice now I have been prescribed 2 25/100 pills twice a day, a year apart, by two different neurologists and manufactured by two different pharmaceuticals, but with the same effect: ( tongue jerking so much so I could hardly talk, left hand and foot jerking so much that it hurt to walk and I got limps on both areas). My second neurologist, a movement disorder specialist in LA said he had never seen someone react that way to Sinemet. While I have no specific answer for you, it gives me some measure of comfort to know I am not alone in this reaction . I had a negative reaction also to Amantadine and to Ropinirole but not as dramatic and not as immediate. I now take Mirapex ER and supplemented by pramipexole somewhat during the day plus Mirtazapine at night. While not diagnosed until I was 66 when I developed a tremor in one hand, I have had obvious symptoms since I was 48. Wish I had an answer to this question. I told my new neuro at USCF and he said it did not sound like a reaction to the yellow dye in the pills. .........who knows?

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I've had nothing but problems with the meds!

It took almost 4 months of increasing the dose and decreasing the duration to "find my dose", and the dyskenesias showed up about 6-8 months. I take 1600mg a day, in 6 doses. I had immediate reactions to C/L.  Mayo told me they'd never seen side effects so bad. The goofy part is that the C/L works perfectly, and I also have every side effect except the black box warnings.  The dyskenesias showed up about 6-8 months.

In the first 5 months of C/L I lost 30 lbs, wicked vertigo, dizziness, orthostatic hypotension, constant sneezing, stuffed up sinuses, headaches, earaches, increased heart rate/BP, bloated, gassy, upset stomach, severe insomnia, Throat fuzzy, irritated. Constantly clearing it, Throat dries out even if sticky, coughing, any sensation of hunger totally disappeared. My voice is dry, hoarse, rough, gravelly sounding. I get crazy easy bruises which last forever and any wounds are very slow to heal. Lost 65% of my hair, massive fatigue and weakness, cardiac issues...  It was nuts.  I took the the yellow 25-100 for a year, but the switched to the 10-100 which helped the intensity of the symptoms.  I've been on the10-100 ever since, and I'm not 2.5 years in.

I've always been medication sensitive but it wasn't until January of this year that I finally knew why it was so bad- I have Mast Cell Activation Syndrome, most people know it from Asthma or hot spots in dogs.  In MCAS your immune system is hyperactive, and doesn't identify what to do with medication properly.  The mast cells (which are in every cell of your body) flood your body with histamine in an effort to get rid of it. It can be just as dangerous as a classic Ig-A or Ig-E allergy- you get the same anaphylactic response.

My mast cell triggers are the yellow and blue dyes in the meds, along with some of the other fillers and binders.   So, I now have custom compounded medication and trials to figure out what exactly in the C/L is also an issue.  My Neurologist said in 35 years of practice- he'd seen one other patient who couldn't tollerate the yellow 25-100s, but did fine on the blue 10-100.  He'd also seen one European patient who took Madopar in Europe (which uses beneserazide) who couldn't tolerate the American version with Carbidopa. 

Edited by Waywrd1
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I got dyskinesia on the second week of C/L. I take the generic C/L 25/100. My dyskinesia is a bobbing back-and-forth like I’m bowing.The way I manage it is to take a quarter tablet every one and a half to two hours. If my stomach is empty I take it and wait 15 minutes before eating. If I’ve eaten I wait 45 minutes after before taking it. If I simply cannot time the  eating properly then I will eat something with as little protein as possible. 

I also take three dopabean capsules with enteric coating instead of the quarter tablet a couple times a day. I like the way it works like l-dopa but smoother, less dyskinesia. Very expensive though.  

 I get dyskinesia at the beginning of a dose if I’m taking too much. But I also get it when I’m coming off of a dose. It kind of lets me know I am waiting too long and need to take the pill sooner. 

Since breaking the tablets into quarters isn’t a perfect science I break a number of pills at once and look them over as I take them throughout the day to pick the slightly bigger or slightly smaller one depending on how I’m feeling and what I need to do over the next couple hours.

Many members of my immediate biological family are extremely sensitive to medications. I just assumed that’s why I started the dyskinesia so quickly. I barely have a tremor unless I’m under stress. But I am very stiff and slow without the meds. I didn’t start taking C/L until four years after my first motor symptoms.

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