Extended Release Carbidopa Levodopa

[PDIS]

Our mother takes Extended release Carbidopa Levodopa at night time, 9 pm. She wakes up usually around 5 am, and rarely has movement issues. She gets her first dose of "regular" Caridopa Levodopa at 7 am, and every 4 hours thereafter. It is often a mystery as to what type of day she will have, often shuffled walking an hour before next dose and/or mumbled even confused talking more dementia type symptoms. We are wondering why the extended release doesn't seem to have the same effect, and frankly if the dosing is only 4 to 6 hours on extended release, we even wonder how she can move, talk or do anything 8 and 9 hours after taking the dose. Anyone else seen similar symptoms? We want to approach her doctor with this, but sometimes the neurologists think their regiment is the only regiment.

[park_bear]

This is not a complete comparison because I am intolerant of levodopa during the day. I only take one dose of generic Sinemet CR at bedtime and am still good eight hours later. So I spend my day in the off state, which is not too bad for me since I am early stage. One possible explanation for the longer nighttime duration is simply slower metabolism, since we are at rest.

[MBAnderson in reply to park_bear]

park_bear, is it also possible that because both immediate release and extended-release are the same dosage, the extended-release spreads that dosage over longer period of time and therefore at any particular time the PWP is getting a lower dose?

[park_bear in reply to MBAnderson]

That is very definitely the case. Immediate release gives a big initial burst and drops off rapidly. The various time-released versions give a steady dose over many hours. The area under the curve is similar for both versions but the distribution over time is much different.

[PDIS in reply to park_bear]

Good point about the slower metabolism. Thank you for your input. We are trying to get a handle on her non-motor symptoms which are more prominent than any motor symptom.

[Kevin51]

Sounds like night-time meds are working fine and you want to improve the day time. 6-12 monthly appointments with neuros doesn't allow them to optimise usefully and since it is a symptomatic treatment there is no incentive to change that. In practice, exercise, general health and what we eat all interact and it takes time to get meds right. There is lots of advice on this site. It also sounds like the daytime meds sometimes work well so maybe you can work our the other factors (e.g. diet) and improve your mother's day.

[rhyspeace12]

Ask your neurologist about Rytary.It has helped my husband a great deal to avoid off times. It is slow release carbadopa/leveodopa. It is different from Sinemet CR. It is very expensive but drug assistance programs can get it for you free if you are in the US.

[teriincali]

My mom has been taking extended release carbidopa-levodopa at night for almost two weeks. I give it to her at 2am and she wakes up at 8am with the symptoms back. The regular pills give her too much off time. Today we added a second extended release at 11am, after the regular strength at 8am. In a few days we'll add the third extended release at 5pm, followed by the last regular pill at 11pm. I know she'll still have off time as each dose wears off and the new one kicks in, but at least it will happen less often.