My experience, experiment going w/o has not worked out well. My tremor is most troubling. This morning I started.
re-starting C/L 50-200 ER: My experience... - Cure Parkinson's
re-starting C/L 50-200 ER
I do reduce from 3 times a day to one or two but not stop it.
I was taking 1 in the a.m. and 2 in the p.m. This morning I took 1. I think I will see what 1 a day will provide.
I stopped taking my C/L and did ok for one day but the second day was hell. I now take 3 25/100 ir and 1 50/200 er every 4 hours 24/7 and 2 6 mg Requip in the morning and am doing good.
have you tried c/l immediate release? my neuro says the the c/l extended release isnt really er; that the "on time" isnt much longer than with the c/l ir. he ordered the er for me because i wanted to try it, and he was right. i felt terrible! i think its easier to control the on/off time with the immediate release. i take 25/100 ir, 1 tablet every 2 hrs. sometimes, if i start to feel "off" before my next dose is due, i will take a half of a pill, and then take the other half when the dose was due. so, im really not taking any extra, just evening it out. (which is what the er is supposed to do, but doesnt). i have very little "off time", about 30 minutes/day on a bad day, and no "off" time on a good day. i have been on c/l ir for 11 yrs. i would give the ir a try; youll have better control over how you feel.
I'm glad you are using what works for you but it is the exact opposite is true for me and a number of others here - IR terrible, ER/CR perfect.
AS to the allegation that "the c/l extended release isnt really ... much longer" - this is not so. Per this chart: google.com/imgres?imgurl=ht...
IR levodopa plasma levels are already declining at the 2-hour mark whereas CR levels don't start to decline until after 4 hours.
i wish it did work for me. it would make life alot easier. i have to always be aware of the time.
Park bear , your link - was redirected to a loooong paper, I think a patent application. It did say .....
“Currently available controlled release formulations of CD/LD are meant to allow for a continuous release of drug over a prolonged period of time in an attempt to maintain tight LD plasma ranges. However, the use of these controlled release dosage forms are problematic in that many PD patients wake up in the morning having little or no mobility due to the wearing off of the dose taken the day/evening before. Once the previous dose has worn off, such patients are usually unwilling, or even unable, to wait for the extended period of time required for a controlled release dosage form to deliver the necessary plasma levels of LD.”
This was the image I was intending:
patents.google.com/patent/U...
also of note:
karger.com/Article/Abstract...
Comparison of Immediate-Release and Controlled Release Carbidopa/Levodopa in Parkinson’s Disease
"Activities of daily living scores in the Unified Parkinson Disease Rating Scale (UPDRS) consistently favored the Sinemet CR treatment group and a number of the NHP scales also favored the CR group. "
Well Park bear, we all do it but I do notice you have picked out comments that support your dislike of IR levadopa meds while ignoring the overall conclusions.
In the first reference I did get directed to the page you cite and it is for a patent maybe Rytary. My quote above is from that paper but it is not really a comparison paper so much as a drug company patent application.
The second reference does say as you quoted but the 20 yr old paper (1997) concludes
“During a 5-year treatment period, control of parkinsonian symptoms was maintained by both immediate-release and sustained-release carbidopa/levodopa. Both treatment regimens were associated with a low incidence of motor fluctuations and dyskinesias. There was a statistically significant difference (p < 0.05) in activities of daily living as measured by the UPDRS in favor of Sinemet CR.”
I use and prefer CR but by far the majority of people use IR with as good effect. In general IR is certainly favoured by neurologists. I suspect if you tried IR now you would not have the reaction you experienced when you first took it.