I'd like to know if there are any of us who are taking 1,000 mg of levodopa or more per day. That would be the second part of a sinemet or carbidopa/levodopa tablet. So if you are on 25/100 and take 6 pills a day you are taking 600 mg levodopa. Thanks.

Usually 600mg daily..Some evenings when I am in shuffle mode I take 300 mgs one shot, and it is usually a waste of time and medication

I'm on 600 mg a day

GregD

600 mg per day. My neurologist tells me that this is still a low dose.

1 (one) 25/100 when my wife makes me take it. otherwise nothing. Pre-DBS I used to take 2250 mgs of sinemet daily. Yes, I was dyskinetic!

Charlie

Thanks you guys. I'm just trying to gauge how out of norm I am, at 1500 per day. My neuro is off the wall at how much I'm taking. But ya do what ya hafta do. It's not like this stuff is cocaine or something that I enjoy. It's a pain in the !@#$ to have your life ran by a timer, trying to stay on so you can get something accomplished, when do I take the next dose, did I take the last dose, etc...

anyone else, How often do you take your meds, I have to take 25/100 every 2 hrs.

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Current 400 is not effective. I take 1 tablet every 6 hours.
I expect the dosage will prudently be increased, some patients are told sinemet can do its work the rest of their lives. some find sooner or later
efficacy diminishes. could say we are "practicing patients"..................

thanks, i am interested in how much and when...to get a bigger picture
of the range of treatment.

davos
dx 2000
b 1936

... along with half a dozen other meds. I am an early onset patient and at 52 y.o., I've been taking assortment of meds for over 20 yrs. At one point, I experimented with dropping most of the other meds and increasing the carbo/levo. Psychologically, I thought the fewer drugs I took - regardless of dosage - the healthier I was. Big Mistake!!! I stupidly increased up to almost 2000 per day in order to function on any level! Only did this for several weeks, then eventually returned to old formula.

Bottom line: for now, what the doctors tell us is accurate - Take as little carbo/levo as you can ("optimizing" it with all the other dopa-boosters currently used such as comtan, mirapex, requip, amantadine, etc.) but take as much as you need (to function at your personal best). By "personal best" I mean minimizing dyskinesia and ON/OFF effects and maximizing quality ON time (without symptoms or side effects.)

"As little as you can, but as much as you need" is different for each of us.
This is just my opinion on the subject.
KK
PS- No long-term effect experienced from that 2000/day period. After 20 years I am still alive. My quality of life has certainly been compromised over this long a time, but I believe intense exercise has always helped me stay in the best possible condition possible.

So don't abuse levo/carbo but don't fear it either. If you need more take more...with caution. I hope this helps.

I take 600 mg per day. The following caught my eye recently and makes such good sense that I thought I'd pass it on.


1: Rinsho Shinkeigaku. 1994 Mar;34(3):264-6.

[Gastric acid secretion and absorption of levodopa in patients with Parkinson's
disease--the effect of supplement therapy to gastric acid]

[Article in Japanese]

Yazawa I, Terao Y, Sai I, Hashimoto K, Sakuta M.

Department of Neurology, Japanese Red Cross Medical Center.

Since an oral regimen of levodopa has been instituted for treatment of
Parkinson's disease, its absorption and metabolism has been well demonstrated.
However, its chemical characteristics of high solubility in acid solution and low
solubility in water have not been well known. We paid attention to this
characteristic and studied the relationship between its absorption and gastric
acid secretion in 38 patients with Parkinson's disease who became refractory to
therapy of levodopa. We measured the pH and amount of collected fasting gastric
juice. Gastric acid secretion was decreased in 22 patients (58%). In ten of these
22 patients, 30 ml of lemon juice was prescribed in every administration of
levodopa as a supplement to gastric acid for two weeks. Increases of L-dopa
concentration after 60 min. and 180 min. were observed after lemon juice
supplement therapy. Among the Parkinson symptoms, rigidity, akinesia, and small
step gait were improved in every case except one patient who showed decrease of
L-dopa concentration at 180 minutes. However, improvement of tremor was less
remarkable. We consider this supplement therapy to gastric acid is one of the
effective and useful methods in the management of Parkinson's disease.


PMID: 8200147 [PubMed - indexed for MEDLINE]