Do you take your carbidopa/levodopa, daytime only, or around the clock?

[Suz]

Hi John,

My sis has taken it for 30+ years, currently in a time released capsule, Rytary. She takes hers only during waking hours, every 2 1/2 hours. She starts at 6:00 A.M., last dose at 11:00 P.M. This is the schedule noted on her prescription bottles. This has been her schedule with Rytary for about 10 years.

She takes a sleeping pill, Temazepam 15MG, at bedtime but still has a bad time with sleep.

[cas]

I take mine 3 times per day. On pill at 8,2 and7.

[Joey]

I take it (early) morning, mid-day and early evening for about a year now. Shouldn’t complain, but I will.

Never needed pills for anything in the past. I suppose I am a little ungrateful considering I had good health for so long…I’m working on it. 🙏

[chinacat]

My husband was diagnosed with PD in 2013. He has been taking C/L during daytime hours only since the beginning. For the last several years he takes 2 tablets every four hours starting at 8:00 a.m. until 8:00 p.m. Sometimes he wakes up later in the morning so we adjust the schedule but the daytime only seems to work for him. His PD is quite advanced now and he suffers from dementia so takes and anti-phychotic med before bedtime which mostly allows him to sleep through the night. Before this med he had started having nightime hallucinations and wandering around the house in the dark, trying to leave the house. Sometimes he will wake up once or twice to urinate, but most often not until early a.m. then goes back to sleep.

[Carol Hardbarger]

I take my c- dopa/l-dopa during daytime, trying to take last dose no later than 7 pm. I also take two ER tabs at bedtime which my doctor said helps me to be less groggy in the morning. This is because I take Primidone at night for tremors which is known for making ppl extremely tired.

[Shermook]

DX 10 years ago. Took Azilect only for 5 years. Then started on C/L 3 X per day at 7, 11, 3. I have problems with restless legs at bedtime so also take Pramipexole (AKA Mirapex) and Gabapentin in evening (take that at 8). Mirapex is a “dopamine promoter”. For about the last year, I have reduced my C/L to 1 at 7 a.m. and about 1:30 p.m. However, if I am going out in the evening and expect to be fairly active, I will take another one before I leave.

Sleeping has long been an issue and I have tried different things including CBD tincture, CBD gummies, medical marihuana/CBD tincture or gummies, trazadone, melatonin, Ambien and health food store combos for sleep. They all worked at first but eventually wasn’t as effective. So, lately, I am not doing any of those with the exception that I keep a prescription of Ambien (of which I take 1/2) for when I really can’t sleep which is not very often (for now). I have added Taurine to my routine. Dr. Google says “Taurine is an amino acid naturally found in the body with sources from meat, fish & eggs. It is good for your heart and brain. It is involved in the production of melatonin and early research suggests it acts as a natural sedative to help calm anxiety and stress.” I take a 500 mg capsule at around 9:30.

Something else that has worked for me is (Brand name) NATROL 3 a.m. Melatonin SLEEP, (Amazon) designed to help you fall back asleep after that 3 a.m. bathroom run with which I was having issues. It dissolves in your mouth or under your tongue so not need for a mouthful of water. It contains another amino acid, L-Theanine well known to have calming effects and promote deeper sleep. I sometimes use it if I am having trouble falling asleep. It works well then, too. It has 3 mg Melatonin and 50 mg L-Theanine. I find that if I use it to help me get to sleep early, I don’t seem to need it after a 3 a.m. bathroom run.

Hope any of this helps.

[Bill Ryan]

4 years

2 tablets 5 times a day

I usually take two tablets every three hours. Sometimes I’ll cut it back to 2 1/2 if medicine wearing and sometimes we go to four or two. At night I take two 5200 ER pills and then start up with the two pillows sometime around four maybe a little earlier later I just got a new thing I’m dealing with it’s called escarpment I don’t have it here to give you the name but else add it later it’s a two extend extender that you take apparently anywhere one to eight times a day before you go into an off mode so that I haven’t worked out yet and I’m not sure I was gonna work with my crazy way of adjusting my time to my on off situation, does anybody else do that? anyway more latery stay safe

[dmcconnaughay]

My wife’s neurologist had her taking the 25/100 dose c/l (3 times daily (morning, midday, night) since she was diagnosed until last fall when she started having nightmares and acting them out at night. She prescribed the 50/200 ER dosage at that point and added an antidepressant (to address memory and anxiety issues), along with 1mg melatonin tablet (all taken at bedtime). She also added a half dose of the 25/100 in the morning.

My wife’s nightmares and memory/anxiety issues were drastically reduced and continue to be much better. Throughout her time with this neurologist she has taken an extra half dose of the 25/100 pills anytime she either felt stressed or anticipated a stressful situation (my wife and I both are strong introverts).

Our relationship with her neurologist is wonderful and she listens and explains everything to us very clearly. And she is slow to add medication and explains exactly what each should accomplish. We follow her advice and instructions exactly and always see positive results.

[Daniel Beinart]

My wife was diagnosed with PD three years ago. Currently taking Rytary and pramipexole during waking hours, last dose at 9 PM. She has been taking mirtazapine before bed for 3 years, and mostly sleeps well. If she gets up to pee, she usually can go right back to sleep.

[Gerald McCarty]

I am 5 years post dx and for a short while was taking 3 IR 25/100 Sinemet every 4 hours around the clock. My new MDS let me switch to Rytary, taking 3 36.25/145 tablets every 5 hours (5am – 8pm), then 2 50/200 CR Sinemet to get me through the night. I also take a low dose of CBD/THC (2.5mg gummy). I have averaged 7 hours per night since with the occasional sleepless or more restful nights.

[Kaye]

Hi! I have always taken my Carbidopa-Levodopa every 5 hours starting at 7:00 or so in the morning, then noon and five pm. That’s it for the day, for as the last dose is wearing off, I’m in bed and all is well for sleeping. My doctor has never advised that I need to take it at night or round the clock. I think you could safely make the change after checking with your neurologist, of course. Good luck!

[roberto]

I take 10 pills daily spaced 3 to 4 hours apart. Usually at 9 am 1pm 5pm and 9 pm. My normal bedtime is 10 pm and I take my sleep meds then. Sleep has been an issue for me for years but difficulties have worsened in last 2 yrs since my PD diagnosis

[John Robinson]

Thanks you guys for your replies! It is all very helpful. I appreciate the info.

[Bill Ryan]

The new pill I started is entactapone 200 mg it can be taken up to eight times a day. To respond to off time. It is a CONT inhibitor increase the benefit of load reducing off and like that hang on.

[kdr]

I take Carbi/Levo 25-100 mg tabs at 7a-11a-3p-7p. Originally I was not taking LC at night but was still waking to go to the restroom multiple times a night. Per new physician guidance added 1 time released LC at bedtime and 1 dose of desmopressin. Problem solved!

The FDA approved desmopressin acetate nasal spray (marketed as Noctiva) to treat adults who wake up at least twice nightly to urinate due to nocturnal <g-bubble jscontroller=”QVaUhf” data-ci=”” data-du=”200″ data-tp=”5″ jsaction=”R9S7w:VqIRre;” jsshadow=””>polyuria</g-bubble>. The treatment is taken each night, about 30 minutes before bedtime

[russellintoronto]

After my 2020 dx I started taking 1 tab L/C every 8 hours. That greatly helped with all my symptoms except occasional fatigue and some disrupted sleep. (Melatonin helped the sleep problem, but not always.) Eventually my neurologist increased my dose to 1 1/2 tabs and suggested I shorten the time between doses and take my last dose about 3 hours before bedtime. That helped somewhat with both the fatigue and sleep. A few months ago I was reading a thread on Reddit that suggested the timing of doses should depend on individual rhythms and that noticing one’s body’s responses was the key to dosing. It was also observed that doses of L-dopa in the later evening can be sleep-disturbing. So I experimented with taking 2 tabs on waking, 2 about six hours later, and a half tab five to six hours after that. That has both greatly helped with the occasional fatigue during the day and also improved my sleep. I’ll add that around the same time I added a magnesium capsule to my evening dose as well a glass of tart cherry juice, both proven to promote sleep. I am now able to sleep well most nights and no longer need the melatonin.

[John Wick]

I take 7am. 11 am, 3pm, 7 pm. 2 tablets each 145 mg, trying 1 145mg and 1 195mg as tablets seem to take 1/2 hour to work and only last 21/2 hours. Will let you know how that works.

Incidentally if you are having a urination problem and your PD says its not due to PD, they are wrong. I was with a urologist yesterday and he said definitely it effects urination problem and if you are cancer free it’s from PD. I am trying GEMTESA. Will update all as time goes on.

[gsry]

I take it when I first get up at 5:30, then 11:30, then 5:30. I was diagnosed in March 2024, but looking back I had inconsistent symptoms starting in July 2023. The meds make a huge difference! I’m able to continue with my active lifestyle at 76 years old.

[Don Backens]

I take it at 7am, 4pm and 9pm. I was diagnosed with Lewy Body dementia with Parkinsonism about a year and a half ago. With the c dopa and l dopa at 9pm I take Buspirone, Prazosin, Gabapentin, 150mg Trazodone and Sertraline. Plus a few others not related to Parkinsonism and DLB. So far I would say my symptoms are about 80% under control and I sleep well at night.

[suzannemt]

I have been taking c/l for almost 8 years now; my dosage is 3 times daily and an extended release dose at “bedtime”… sometimes i skip doses because i just feel overwhelmed by the scheduling, but, the tremors i have to deal with after a while, truly depress me. I have been a very active person all of my life but the hindrance PD has me facing is sometimes very overwhelming; and, i get embarrassed out in the world when people notice “something ain’t right w/ her”… I am grateful that there is something available to address this illness but, sometimes, it is quite overwhelming…

[gsry]

What to you do to stay active if I may ask?

[mgm]

My neurologist gave me extended release cl to get me through the night and it seems to work

[Praba]

Reply re Leovodopa/carbidopa

My husband has Parkinson’s with P’s dependent dementia for the last 6 years. He went on the Duodopa pump about 3 years ago. I put it on him around 6.3 or 7 a.m. and I take it out at his bedtime which is around 8.30 p.m. unless we are out somewhere at night.

He takes a metarpah tablet for the nighttime without the pump medication. He sleeps like a log! Wears a good nappy so he does not have to wake up at night to go to the toilet. Occasionally he would get up to do a wee.

The Duodopa pump has made our life amazing with no ups and downs as long as he wears it.

I also got some Aurvedic oil from Sri Lank and since using that on hi had once a day with a nice massage & after 2 and a half months I noticed he does not get physically stuck at corners and call out for help.

Now he has hardly frozen physically, but his dementia makes him forget how to start moving but when reminded he moves by himself.

He even takes the rubbish out and walks around briskly and plays ball with grand kids. Ayurvedic system treats the whole nervous system. The neurologist is pleased with his movements and sleep etc and he has not increased the dosage for the last 3 years.

Kind Regards

Prabhati Milton

[gsry]

I’m a yoga teacher and I’m also use ayuvedic herbs. Do you do other treatments? Where do you live?

Namaste! Gary

[Alan M]

Can’t remember if I’ve responded already. I take Sinemet 3 X a day (9:30AM, 4:30PM, and 9:30PM).

[Lexie Jones]

I’ve been taking mine just during the day, 4 times from 7 AM to about 10 PM. Recently I have started having muscle spasms in my feet and legs up to my knees starting about 4 AM. My doctor said, “Let try a slow-release carbo/doba 2 pills at bedtime and see if that helps.” I have not seen any improvement in the muscle spasms, and I am having slightly more trouble with my sleep. I am really surprised by these results. I just reported them to the doctor earlier today and am awaiting feedback from her. Will let you know what I hear.

Meanwhile, blessings to all.

[jeane]

My husband Joe has been taking 3 Sinemet (25/100) 4.5 hours apart during the day. He continued to be slow to respond to the levodopa in the morning, so his neurologist prescribed a time-released C/L to be taken sometime between 1 am and 4 am. It’s helping quite a bit. It’s taken a while to add the night-time C/L because he might forget in the middle of the night, or he might sleep through the time when he’s supposed to take it. But we finally seem to have it organized.

RBD was the main reason we started talking to a neurologist before Joe was diagnosed, and he’s tried various drugs, but the Melatonin is the only one that really works. His doctor says that he could take up to 9 mg per night. We’ve found that the extended release Melatonin is the only one that works for him. It’s 4 mg per tablet, so he takes two tablets at 8 pm, well before he goes to bed, so that he isn’t groggy in the morning.

When we first started the C/L, the doctor said that it might make the RBD worse, so he prescribed it for only in the day time. I haven’t noticed the nighttime time-released C/L making things worse, but we haven’t been using it that long.

The C/L makes Joe’s orthostatic hypotension worse, so he’s also on Fludrocortizone, and takes salt tablets. Taking a salt tablet before bedtime seems to make the nighttime bathroom visits a little less frequent.

The only other PD related drug he takes is Memantine for his mild cognitive impairment. That has helped somewhat. But the drug that works the absolute best for his PD is the C/L. And we’ve discovered that finding the right dosage and timing is the best way to keep things on an even keel … at this point anyway.

[andy-polis]

I take sinemet 5 times a day, at 8am, 11am, 4pm, 7:30pm and 11pm! At 11pm I also take 2 Madopar hbs capsules and then one Madopar 155 tablet whenever I wake up at between 2am and 5a!