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jflanery

Maximum Dose of Sinemet

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Dear Doctor:

 

I was diagnosed with Parkinson's in 2004. My first neurologist put me on

Requip, which I could not tolerate. I then saw a neurologist who was a

movement disorder specialist and she put me on Carbidopa/Levodopa 25/100 --

I believe about three tablets a day. It wasn't too long before I added

Mirapex and Azilect and eventually Carbidopa/Levodopa CR 50/200. In 2009,

I had what I took to be a nervous breakdown. My neurologist said it was

"drug-induced psychosis." I was taken off Mirapex and Azilect entirely and

for several months used Comitan, only to have to abandon it because of

chronic diarrhea. Since early June 3010, I have been taking five Carbidopa/

Levodopa 25/100 pills a day and seven Carbidopa/Levodopa 50/200 pills a day.

That seems like a lot to me. In late June, I moved to the Midwest and my new

neurologist agreed that 1,900 mg per day was a lot and implied I'd reached

my maximum. He wants me to consider DBS, which I'm reluctant to do. I've had

good luck in calming myself through deep-breathing, prayer and

meditation. Do you think if I used these tools consistently, I could scale

back on the levodopa to a more acceptable range? Or is it impossible to

reduce your intake once you've reached a certain level? Any other options

I should consider? I exercise regularly, walk reasonably and generally

am in pretty good health.

 

Anonymous

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First, make sure you are seeing an expert or someone with a lot of experience,

 

Medication dose and intervals will change over time and vary patient to patient. There is really no such thing as too much as everyone needs a different dose for success. Finding the right dose is the key.

 

Generally we don't do DBS for medication reduction, but rather for symptoms not controlled by combinations of medications.

 

Focus on treating the symptoms. DBS may or may not be a good option, but without seeing you in person it is impossible to conclude.

 

Good luck.

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Hi I'm on about 2000mg and I go into dyskinisia at least 2 or 4 times a day. As Dr.Okun has said everyone will take different doses and combos of meds and each person will tolerate different amounts. My Neuro here in Orlando is a movement specialist and he has me on a combo thats right on "my" limit and i have gone through the screening for DBS and I am a good candidate. I dont live all that far from U of F shands and Dr.Okun had seen me and he added his diagnosis as well. Not sure where you live but if there is a facility such as the Shands teaching hospital in Gainesville Fl, I would highly reacomd making an appointment. The staff at U of FL/Shands where Dr Okun is, are unbelievable. I went there off meds and they were so good about asking questions I had never been asked, and they were so complete on the exam and all they checked. The only reason I'm not going up there for my surgery is that Gainseville is 2 1/2 hours away and my local Neuro is very good as well. I wish you well and ask lots of questions

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Minimal dyskinesias aren't generally a problem for those of you not yet on sinemet. My feet move a little when my meds kick in but it just looks like i'm figiting a little. Very small trade off to be able to move normally.

 

You're underdosed when you stiff moving, and showing all the PD symptoms. You're overdosed when you start acting like a drunk ADHD pre teen. sinemet CR is really easy to overdose on but for me it works a lot better than the regular IF I can get the dose right - which isn't easy.

 

So as others have said - there is no overall upper limit on sinemet - only your own personal upper limit which can change even day to day depending on a lot of thing like diet, stress and who knows what else.

 

Remember also that LIFE is progressive. As we age all our problems tend to progress. PD is no different so you adjust dosage as you need to get the best response and optimize your health to slow aging in general.

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This is just great advice, thanks for posting.

 

I would answer the question , what is maximum dose of Sinemet,i.e., L-DOPA and CARBIDOPA as follows:

Because L-DOPA is a natural substance, increasing content of L-DOPA in one dose will be transcribed into better therapeutic

results only into a certain level, so called POINT of diminishing returns. So, increasing a dose beyond that limit becomes

un-economical.

What concerns CARBIDOPA: its addition to L-DOPA (in a ratio 1:4 [mg/mg] in SINEMET 100 or 1:10 in SINEMET 250, respectively)

moves position of the point of diminishing returns in favor of smaller intake of L-DOPA per day, therefore, plain L-DOPA is no longer used alone for treatment of PDs.

So, the addition of CARBIDOPA to L-DOPA permitted significant reduction of L-DOPA content in SINEMET, in this way also incidence of nausea as a principal side effect of L-DOPA decreased.

Manufacturers of generic SINEMET do not recommend to exceed 8 tablets of SINEMET 100/24 hrs., i.e., if intake of more than 800 mg L-DOPA daily is necessary, SINEMET 250 tablets take precedence over SINEMET 100.

When long-duration response to SINEMET, characterical for early stages in the course of PD, is replaced by short-duration response, dosage = dose size + frequency of L-DOPA intake per day shall be readjusted. This is done by careful titration,

i.e., first, by changing interval between individual doses, then by increasing or decreasing size of dose, as needed,

until optimal dosage is determined, tediously, by a trial and error.

gmk

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I think this is a great post; however there is no limit to 8 tabs a day in practice. It is empirical meaning every patient needs a different dose and strategy with intervals.

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I think this is a great post; however there is no limit to 8 tabs a day in practice. It is empirical meaning every patient needs a different dose and strategy with intervals.

 

I have brought this detail to your attention, because the manufacturer continues to inform patients about the 8 tablets Sinemet 100 daily limit and

that if Sinemet 250 is chosen to start the therapy with, then 1/2 tablet bid is the right dosage, resulting in much smaller intake of Carbidopa than it

would be in case of Sinemet 100 while L-DOPA amount would remain approximately the same. One difference between L-DOPA and Carbidopa is that being

dissolved, Carbidopa stability lasts but 24 hours x L-DOPA, the other difference is, of course, that only L-DOPA is natural substance. I have tried

to resolve the query by suggesting that Sinemet 250 formulation is preferred when more than 8 tablets of Sinemet 100/24 hrs. are necessary. But Dr.

Ahlskog writes that we should not worry about Carbidopa when nausea is under control, prevented.

gmk

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Thanks for the post.

 

The manufacture of the product sets their guidelines---these are not however congruent with practice. There is no limit in practice and it must be individualized to each patient (both carbidopa and levodopa).

 

Thanks for the question but please don't get fixated on 8. The number could be larger or smaller as the disease changes.

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Dear doctor:

 

I want to tell you that it is very scary when you are getting close to 2000 mg a day. For those of us in that catefory it is not very reassuring to hear that we should not fixate on the number 800. These answers seem vague and evasive. What is the highest dose you have ever used successfully with a real patient. What about your colleagues? Please give us some concrete answers.

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Corrine, I have used less than 100mg of levodopa and also over 3000mg of levodopa per day. I tailor the dose to the patient's needs. If it gets the job done, and gets the blood level to a therapeutic range-- and keeps them "on" and comfortable that is the goal. Sometimes the dose gets high because the stomach is not emptying fast enough-- and that can be addressed by a gastric emptying study. Very rarely patients can crave levodopa and do not actually need it (dopa dysregulation syndrome).

 

I assure you that we are not trying to be evasive. This is generally how it works in clinical practice. I tell all of my many patients never to fixate on dose or number of pills.

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Dr

 

Regarding the gastric emptying test, what is the treatment if the test shows it's very slow?

 

Thanks

 

 

 

 

 

 

Dear Doctor:

 

I was diagnosed with Parkinson's in 2004. My first neurologist put me on

Requip, which I could not tolerate. I then saw a neurologist who was a

movement disorder specialist and she put me on Carbidopa/Levodopa 25/100 --

I believe about three tablets a day. It wasn't too long before I added

Mirapex and Azilect and eventually Carbidopa/Levodopa CR 50/200. In 2009,

I had what I took to be a nervous breakdown. My neurologist said it was

"drug-induced psychosis." I was taken off Mirapex and Azilect entirely and

for several months used Comitan, only to have to abandon it because of

chronic diarrhea. Since early June 3010, I have been taking five Carbidopa/

Levodopa 25/100 pills a day and seven Carbidopa/Levodopa 50/200 pills a day.

That seems like a lot to me. In late June, I moved to the Midwest and my new

neurologist agreed that 1,900 mg per day was a lot and implied I'd reached

my maximum. He wants me to consider DBS, which I'm reluctant to do. I've had

good luck in calming myself through deep-breathing, prayer and

meditation. Do you think if I used these tools consistently, I could scale

back on the levodopa to a more acceptable range? Or is it impossible to

reduce your intake once you've reached a certain level? Any other options

I should consider? I exercise regularly, walk reasonably and generally

am in pretty good health.

 

Anonymous

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The treatments vary for slow GI tracts, but some GI docs use domperidone, erythromycin, or azithromycin.

 

The goal of DBS surgery is not medication reduction. The goal is optimizing on time. There is no "limit" to number of tablets and this must be tailored to symptoms.

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The treatments vary for slow GI tracts, but some GI docs use domperidone, erythromycin, or azithromycin.

 

The goal of DBS surgery is not medication reduction. The goal is optimizing on time. There is no "limit" to number of tablets and this must be tailored to symptoms.

I am grateful to Dr. Okun as moderator in this discussion and for sharing his expertyse with us. It is historical truth that discovery of L-DOPA therapy

happened in WIEN (Vienna is capitol of Austria) but to win the acceptance of L-DOPA was the task accomplished in Canada and USA because we had the courage

to increase the dose of L-DOPA as a human natural substance adequately and in each case as needed .

The real issue is not how much L-Dopa is taken per day but how much AND how often it must be taken daily for optimal therapy of individual patient, it is

the task to determine the right DOSAGE of L-DOPA (the dose size and its frequency or intervals between them around the clock).

gmk

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This is a great post. I am taking two 25/250 Sinemet tablets every three hours ( 11am, 2pm, ...etc.) six times a day. My main problem is that the dose doesn't quite last until the next dose. I tend to ride a roller coaster all day. I need to find a way to have a more steady sustained flow of medication. What can I do to get "on" and stay "on" consistently?

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There are a lot of strategies. I would consider a gastric emptying study and a breath test for H. Pylori. Absorption may be the problem. Also, I would consider using the 25/100 size pill and titrating by half tablets to what you actually need (which is likely less than what you are on now) and see if you need it every 2 or every 3 hours. Also DBS and duodopa could be helpful. These are all strategies for when your Parkinson's disease medications don't seem to last- wearing off. There are actually a lot of tricks you and your doc can try,

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There are some nasal delivery drugs in development but no claims have been made on how they will work and how fast they will work in Parkinson's disease.

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