Jan 20, 2010 10:42[L[Delete]][L[Edit]] [L[Quote]]
[L[Points:]] 0 [L[Vote]] this is my first post
i take 1 azilect in morning with stalevo 150---usuallly at 4 am cause that's when i im up and ready to roll (much to ny husbands chagrin)---then another stalevo 150 8 am, then stalevo 125 noon and 4 pm. At 7 or 8 vpm i take a requip xl 8mg and a 1 mg lorzipam for sleep; im also on a 90-day round of medroxypogresterone for perimenopause issues, which i take at night right before bed

my dilemma --- i am here typing this at 930 in the morning and i have the worst dyskinesia, arms flailing, legs moving, AND WORST OF ALL, MY MOUTH IS CONSTANTLY MOVING, MAKING SUCKING, CHEWING MOTIONS AND I BITE MY LOWER LIP INCESSANTLY; I THINK ITS EXACERBATED WHEN I TRY TO DO SOMETHING THAT NEEDS FINE MOTOR SKILLS

how do i remedy this; been told its not due to parkin but to too much dopamine making acrtoss the blood-brain barrier; when i eat it comes back with a vecgeance, by the end of the day, it feels like ive run a marathon

2nd - once you start taking levodopa do yiou hsve to remain on it forever?

Hang in there

Whether sinemet has to be taken the rest of you life is really dependent on the patient and symptoms. I have seen some go off it and change to other meds. The majority though used stay on it in 1 form or another for the rest of their life.

Best of health,

Mark

Good for you for joining this group! You will find alot of support and wisdom flowing from these fine folk!

PD is such a custom-designed disease, isn't it! Wouldn't it be nice if we all responded to PD meds in the same way? Then it would be so easy to pick each others' brains. Unfortunately, because we all respond so individually, the medication regime is often a case of trial and error, as much on the doctor's part sometimes as on our own. Such is the nature of PD. It is important, yet often difficult to be proactive with our doctors, so get educated about this disease so that the next time you visit, you can ask lots of WHY questions, even if they detest that word! I take a list in with me, otherwise I forget half of them.

As Mark the Pharmacist often says, you need to listen to what your body is telling you. And right now it is shouting rather loudly that you are out of whack! Good heavens, girl! As you typed out your first posting here you said you were thrashing all about and making chewing motions...Sounds like drug-induced dyskinesia to me, too!

I am sure you know that Stalevo is a combination of three drugs: Levodopa, carbidopa and entacapone (a.k.a.Comtan). Levodopa and carbidopa together are known as Sinemet and are prescribed in different formulations according to the individual need of the patient. Entacapone increases the "ON-time" between Sinemet which usually results in lower daily doses of Sinemet and thus, dyskinesia. It only works if it is taken WITH Sinemet, which is how Stalevo came about...it made two pills into one, amongst other things increasing patient compliance and cheaper on the pocket book.

Stalevo only became available in Canada a year or so ago, so I have only taken Sinemet and entacapone as two separate pills. I prefer this because it allows me to fine-tune my dosages. I can tweak the Sinemet or the entacapone by dosage or time and can combine the entacapone with either long-acting OR short-acting OR both. My neuro also said that cutting the entacapone in half and using it as a half dose was also okay. Entacapone often causes as build up of dopamine in your system by the end of the day(perhaps you havenotieced you are shakier later in the day) and this is when I would alternate a half tab with a full tab of entacapone with good success.I couldn't do that with Stalevo.

DO remember our individuality and that this is what has worked for ME. I have been doing this for awhile now and am comfortable making mall changes onmy own. You must discuss this kind of stuff with your doctor first!

I hope I am making some sort of sense here. In a nutshell,I am saying you might consider asking your doctor about taking Sinemet and entacapone as separate pills and adjust the doses until you get the combination you want. Or, entacapone may not be the best drug for you. There are lots out there to choose from!

Regardless, you are suffering. Go and see your neurologist. Your body is telling you it is not happy right now! You are the one living with this disease, not your neurologist. You need a med change. Oh, and when that happens, don't forget to ask WHY he/she has chosen the given route...you need to be informed, too!

Head up, gal, we're with you!

Sue

Best of health,

Mark