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Panda

Tapering off Sinemet?

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Hi everyone,

So I saw my neurologist yesterday. It's been about a year since I started taking Sinemet and I told him that I had recently dropped from three pills a day to two as I was struggling to maintain a medication schedule around my job. He was perfectly happy with my doing this and went on to say that in another few months I could try going to just one dose a day. He says it's possible given how young I am (29) that I might not need to be on Sinemet long term. So yay for me, but at the same time I've never really heard of anyone gradually taking less Sinemet, only more, and I was under the impression that once you're on it, you're on it for life. I know some people stop taking medication by choice, but has anyone else done this under a doctor's instruction? There's no such thing as temporary Parkinson's, right?

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Panda,

 

Not uncommon at all.  Main thing to remember is slow transition.  So dropping from three to two a day would be fine.

 

For me a big challange is weather. In the summer with hotter months I do not seem to need as much medication, but on colder days it takes longer to kick in and move as well. I first thought it was just the cold weather cramping my muscles, but maybe shorter days so I am less active outside is a bigger reason. So if all goes good, and you can ramp down, that is fine.

 

Keep a daily journal and keep log of date, temp, and how you are doing. Sometimes it takes looking back over three months to figure it out. I use a shopping cart as a "keep my balance, stealth walker" and soon realized that above 25C (77F) I was able to walk unassisted.   Cold weather, meds "on" and if I get a sunny 10C (50F) day, look out for falling. Critical I park up front (and use my dreaded handicap parking placard) and have a cart to steady myself with.

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Right, there is no such thing as temporary PD.  However, many people wean down or off the Sinemet and other PD meds.  The proper exercise routine allows many people to lower or eliminate their PD drugs.  MANY MDS's (including mine) don't believe in starting Sinemet until it's really NEEDED.  It stands to reason that if many people don't start PD meds early in their disease, then many people that do don't really NEED them.  If you're able to wean from three pills a day to two, maybe you don't need any.

 

Doctors like to prescribe a pill for everything.  Many times, it is not needed.   

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  If you're able to wean from three pills a day to two, maybe you don't need any.

 

 

 

I agree with Patriot.

 

(Immediate release) levodopa has a very short half-life, meaning you need multiple dosing throughout the day (at least 3 times/day) to maintain a reasonable symptomatic effect. So, if you feel fine with only two pills, you may not need levodopa at all (yet).

 

@Panda: Taking just one pill of IR levodopa/day is pointless. Maybe your neurologist wasn't clear enough on this....Any chance you are on controlled release and not immediate release levodopa? This might make some sense.. Otherwise, you need to find a new doctor who knows what he is talking about!

 

Also, there's no such thing as "temporary Parkinson's". Parkinson's is an incurable, chronic condition and degenerative  (it gets worse with time).

However, although the disease does get worse with time, the patient may actually feel better -especially for the first 5-10 years of treatment- once  treatment (drugs, exercise, whatever works for each patient) is optimized.

 

finally, it is also true that a patient with Parkinson's will eventually need levodopa at some point. the choice of when to start taking meds, and when to start taking levodopa is highly individualized, depending on multiple parameters, and should be made by both the neurologist and the patient.

Edited by christie
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Christie, I'm not sure that one Sinemet a day is pointless if used to address a specific time of symptoms. My husband has a great MDS at a NPF Center of Excellence. He takes one Sinemet at night and it relieves nighttime symptoms (leg tremors) that kept  him awake. He has been on more Sinemet in the past but it seemed to have little effect on day-time symptoms. He is tremor dominant. We'll address it again on his next visit with his MDS. 

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Golden, one immediate release Sinemet per day is pointless, because its effect lasts for 3-4 hours top.

However, if the drug is used to address specific situations, as in your husband's case, I suppose such a use may be acceptable.

But this is far from the "norm".

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Far from the norm is correct but it does get him 3-4 hours of uninterrupted sleep which he didn't have before, I sleep better too when he is not up and down so much! Getting these medicines just right is a challenge. 

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Far from the norm is correct but it does get him 3-4 hours of uninterrupted sleep which he didn't have before, I sleep better too when he is not up and down so much! Getting these medicines just right is a challenge. 

 

    I'm surprised to hear he still has trouble sleeping. I use to  sleep no more than 3 hours a night but tai chi amazingly gave me a good 6 or 7 hour sleep - as long as I get it in by 5 or 6 am when i get up.   But we are all different, your hubby has probably improved in other ways.   

Edited by lethe

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Immediate release, but my symptoms are very mild. I take one pill shortly before starting work, and a second on my break, which is anywhere from four to six hours into my shift. it tends to wear off in the evening, but I don't mind being a bit stiff or shaky if I'm just kicking around at home. I'm a nursing assistant so taking the pill at set times just doesn't work for me because my shifts move around and I can't rely on taking a break at the same time each day. What I do works for me.

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