Sinemet / carbidopa levodopa : “In 198... - Cure Parkinson's

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Sinemet / carbidopa levodopa

RoyProp profile image

“In 1988, the U.S. Food and Drug Administration (FDA) is recommended that the daily dose of Sinemet should not exceed 800 mg per day, and as of 2013, this recommendation has not been revised. In 2018 the labeling of Sinemet recommends not exceeding a levodopa total daily dose of 2,000 mg per day. As movement disorder specialists, general neurologists and primary care doctors have learned, many people with Parkinson’s can easily tolerate the higher doses used to minimize symptoms. Some people with PD encounter problems with insurance reimbursement of higher daily doses because of the FDA regulation. An insurance decision can be appealed if necessary.”

What is your dose?

C/levodopa 25/100 IR?

One tablet, 2, 3, 3.5? each dose.

Max size is 3.5 tablets. Use the lowest size that works.

By the book you first find single dose that works. Then spacing 3,5,6,8.

Dyskinesia is based on the last single dose size.

It takes 3or4 hours for the dose is used up. If you take another dose too soon, you add to the dose size.

9 Replies

Royprop...I only use fava pod extract.i grow them organically and make it myself.Sinemet would be a last resort for me if I could no longer grow the beans.

My husband takes Sinemet 25/100 IR 1.5 pills 4 times per day at 7:00 am, 11:00 am, 3:00 pm, and 7:00 pm. He gets up at 5:00 am each morning and doesn’t take his first dose until 7:00 am. We don’t understand why he should be taking it every 4 hours if he can go 12 hours without it at night while he is sleeping. He just mentioned he wonders if he can take just 1 pill 4 times per day instead of the 1.5 pill 4 times per day. He said he feels fine from 5:00 am once he gets up until 7:00 am when he takes his first dose. Does this mean he may not need this large of a dose? He started on the Sinemet Dec 17, 2020.

RoyProp profile image
RoyProp in reply to ssrs

You are right. Find the lowest dose that works. Then spacing 3,4,5,6,8.

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic, thirty-years experience.

"Parkinson's disease" Vitamin B1 use instructions : Join my Facebook group Parkinson’s thiamine hcl

Thank you Roy. We also have him following the high dose thiamine protocol. I am also a member of your FB group as Shaunna Shelton.

Also we will purchase the Above book that you have recommended.

My husband has decided to cut his Sinemet down to 4 pills instead of the 6 which he had been taking.

Thank you,

Shaunna & Ron

RoyProp profile image
RoyProp in reply to ssrs

Try lower. As low as will work.

See if you can order Kindle version of book

I am taking Carbidopa / Levadopa 25 / 250 ( 2.5 times stronger )

5 dose x 1 tablet

7am 11 am 3 pm 7 pm 11 pm 4 hour interval

total 1,250 mg

starting to only last 3 hours but not bad so my neuro wants to delay increasing dosage for another 6 months and evaluate then "unless things change". My neuro says there is no maximum , its just a matter of the severity of side effects.

I have always taken enough to reduce the severity of the PD, but not enough to eliminate the PD symptoms entirely. I am in Canada so it does not matter what some bureaucrat in the the US food and drug admin said in the fifty's.

over 20 years of tremor and it still bugs me

RoyProp profile image
RoyProp in reply to GymBag

Get Kindle book.“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Consider Dr. Ahlskog’s long experience and advice regarding dose and Instant Release vs Controlled Release

Not overlapping each dose as I see you are not overlapping. Overlapping before the previous dose is finished increases the size of dose.

Anyone else experienced the following:About 7y dx and taking 2x 100mg c/l, plus entacapone. 4x/day. I was not getting 4 hours control—more like 3-3-/2. I told my mds and he suggested adding 50 to each dose. He wrote the script for c/250. While waiting for the mail order I used a splitter to cut the100s in half and all was well, I took the 2x100+ 50 and entacapone. My on time improved. The 250s finally arrived and took them at noon and 4. Not long after the second dose I started getting an unpleasant feeling in my legs. It went away after an hour-it was very unnerving. At bedtime I resumed taking the 2x100, plus 50. I haven’t had the problem since. I plan to call the dr. next week. My theory is that the split pill releases ahead of the intact 100s and gives me a smooth ride, while the 250 tab explodes in my gut and gives me dyskinesia. Thoughts?

Levod profile image
Levod in reply to DrewE

I wouldn't expect the two cases to be that different, but it seems like a good guess. You can test your theory by splitting the 250 tablet (eg, into 3 pieces).

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