When to take Co-careldopa 12.5mg/50mg tablets

About Parkinson's and health Treatments and therapies
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I was diagnosed just over 8 months ago and put on to Co-careldopa 12.5mg/50mg tablets, 1 tablet 3 times a day. There was no mention as to what times I should take these 3 tablets and I picked on 8am, 2pm and 8pm.

At my first appointment with the Parkinson Nurse I wanted to ask if these were the right times to take the tablets or not. The appointment lasted about 20 minutes and I really had no chance to ask anything at all.

I had many questions as this was my first opportunity to speak to anyone about my diagnosis but I had no chance to ask anything really and was given no real practical information or any indication of what would happen or not happen in the future. I found myself outside the door, none the wiser about anything. I was basically just told to exercise and keep a positive attitude.

As you may imagine, I was more than a little put off by the whole thing and am only now starting to get my head round what is happening to me. My next appointment with the Parkinson’s Nurse was in March 2026 and has now been cancelled and re scheduled for May 2026 so who knows when I am actually going to be able to ask the question.

Has anyone got any thoughts as to how to space out my tablet taking. I don’t notice any obvious ups or downs by taking the tablets at these times although I do think that I feel a bit more shaky coming up to the 8pm dose but that is the only thing I can think of. Any thoughts would be appreciated.

Any tips on actually being able to get a word in edgeways when you see your Parkinson’s nurse would also be gratefully received.

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Hi @listercat , welcome to our forum.

It sounds frustrating to have waited so long for that first appointment only to come away without the chance to ask the questions that mattered to you.

If you think that speaking to someone in our team would help, you’re very welcome to call us on 0808 800 0303 - we’re always happy to talk things through.

We also have this page on Co-careldopa that you may find interesting, and this thread from other members of this forum.

You’re very welcome to keep asking things here. There’s a lot of lived experience on the forum, and you don’t have to wait until May 2026 to get support.

Sending our best wishes

The Parkinson’s UK Moderation Team :blue_heart:

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I have received no guidance either, but have settled for 8am, 2pm and 7pm. So pretty close to your timings. Works for me.

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My advice when you have a meeting act like a salesman, take control of the situation and don’t let them speak over you or down to you. It your meeting with them so hold your ground and ask the question you want, don’t let them do all the talking, and if needed cut them off in a nice manner and be in control of the meeting remember there are there to help you, and don’t be put off by them talking all the time.

Also it worth while to have a list of questions written down, before you go in.

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Hi @listercat

I’ve sat on both sides of the desk so I understand your frustration.

My advice would be: About a week before your appointment call the admin team (their number should be on your appointment letter or email) and ask for the email address of the nurse you are due to see.

Email your questions to the nurse a few days in advance of the appointment and (hopefully!) this gives them a chance to prepare answers/advice/leaflets/links etc. so you can both feel like you’ve had a productive consultation and made best use of the precious time.

Simon

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This is a problem now. We asked for a face to face appointment in June, we were sent a telephone appointment for September. I phoned again, need a face to face, another appointment sent, now the end of Sept. This appointment was ‘rearranged’ numerous times pushing further along. We finally saw the nurse at the end of Oct.

She then wanted to see hubby in about 6 weeks . The appointment that was sent through January 6th, given we have Christmas this was ok, but then this was then rearranged again to 25th Feb. We fly to visit our daughter on 1st March, I just hope this one isn’t rearranged again.

Even getting to talk to a nurse as we used to be able to , usually within 24 hours we are now waiting a week to 10 days.

@listercat at least you can come in here and people help also as the mod says phone the help line.

Hubby started off on 25/100mg and was taking them 10am 4pm 10pm. He has difficulty getting up early. He doesn’t go to bed early .He’s now on 4 a day 10-2-6-10, plus 2 CR half sinement after midnight.

As long as the dosage is spaced out evenly and misses your meal times you will be ok.

Good luck and don’t be afraid to ask the community any questions you have no matter how daft you may think they are.

x

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My husband has been on cocareldopa for 2 years now. He was advised to take them 3 times daily with meals, to avoid nausea. So that was c 8am, 1pm - 2pm and 6pm - 7pm. No mention was made at the time regarding protein intake, though I know it affects some people. And a late meal meant a late tablet, inevitably, sometimes 8pm.

About a year ago a Parkinson’s nurse advised him to take it at specific times, rather than related to meals. This has suited him better. 7.30am. 12.30 pm and 17.30.

My advice, in the absence of any professional input, would be to choose times to suit your lifestyle, then stick to them as far as possible. It sounds like you need the evening dose a bit earlier, so it might be an idea to try this.

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Good afternoon Listercat. I am 71 years old. I was diagnosed with Atypical Parkinson’s in June 2023 following a positive datscan according to the NHS neurologist. I have had “symptoms“ like most of us for a number of years. I have been a sportsman all my life.

There had been quite a few “issues“ when I played golf. I would freeze standing over the ball, totally unable to move my feet. I have struggled to hit 1 inch putts. I have been a low handicap golfer. But there I was struggling to putt the ball into the hole. Once it took 15 putts to get the golf ball into the hole, it should take only 2 putts maybe 3 putts on a bad day. So I gave up golf and took up Indoor bowls about 18 months ago. My problem with bowls was freezing [unable to move my feet] and my balance, I frequently fall over.

I have been taking Co-careldopa like you, 2 pills x 3 times a day, which is twice your dose. I also take Rasagiline, 1mg pill once a day.

One of the side effects of Co-careldopa is insomnia. I was having nightmares, sleepless nights and restless leg syndrome as well as thinking my nightmares / dreams were real.

One morning I awoke thinking I had left my white horse in the car park, I don’t have a white horse. Also often dreamt that I had work that I needed to do relating to the job I retired from 20 odd years ago.

I saw 3 neurologists privately talking to one about my sleep issues, the second one about the Neuropathy I have and the last neurologist about my Parkinson’s. The first neurologist said that he thought my sleep issues were a side effect of the

Co-careldopa I take. The second neurologist said that my neuropathy was mild and was not the cause of anything. The third neurologist looked at my datscan and said he thought it “normal“. He sent the datscan away for an expert second opinion which came back with slight signs leading to a diagnosis of early stage / mild Parkinson’s. So he suggested I stop taking my Co-careldopa which I did for 2 months. During this time I found my poor balance returned and I started to fall over when playing Indoor bowls. Once falling over 8 times in one game. But with no Co-careldopa in my system I was sleeping so much better.

So … I now only take Co-careldopa before I play Indoor bowls. 2 pills at 7.30am and

2 pills at 12pm. I never take the evening pill. If I am not playing bowls I do not take any pills at all. If I play bowls early in the day I only take 2 pills at 7.30am.

This has worked perfectly for me. No falls at bowls and my balance is good and I am playing better than ever.

There are 40 odd different symptoms for Parkinson’s. My main problems are poor balance and freezing. I only shake when eating or in a stressful situation. Other people have different symptoms to me.

I would suggest a trial and error with the times you take your medication. Try for a week and keep records on how you feel.

Maybe take your 8pm dose at 7pm.

Do let us know your thoughts on what we say. This is a learning experience for all of us.

Best wishes

Steve2

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Taking high doses of Sinemet (carbidopa-levodopa) over many years can lead to several potential issues.

Long-term Effects:

  • Dyskinesia: Prolonged use may result in involuntary movements, known as dyskinesia, which can be distressing and impact quality of life.

  • Wearing-off Phenomenon: Patients may experience a decrease in medication effectiveness over time, leading to fluctuations in symptom control.

  • Motor Complications: Increased risk of motor complications, including abnormal movements and difficulty with coordination.

Other Considerations:

  • Side Effects: Common side effects include nausea, dizziness, and orthostatic hypotension (drop in blood pressure upon standing).

  • Psychiatric Effects: Long-term use may also lead to mood changes, hallucinations, or confusion in some patients.

Monitoring and Management:

  • Regular follow-ups with a healthcare provider are essential to monitor for these complications and adjust treatment as necessary.

  • Dosage adjustments or alternative therapies may be considered to manage side effects and maintain symptom control.

Consulting with a healthcare professional is crucial for personalized advice and management strategies.

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Hi,

I too are fairly recently diagnosed, I have been titrated on Sinemet 12.5/50 mg starting on 1 every morning, and now (this week) increased to 4 per day, 8am 12 midday 4pm and 8pm with a view to start on a Dopamine Agonist Ropinirole XL 2mg every morning if I have no side effect from the 4 daily. I have also been advised to drink plenty of water when medicating and to take the medication 1 hour before or after food, so there seems to be a lot of different advice floating around!

I have had to go private for examination, as the local NHS earliest appointment is for June 26 so no scans yet and no formal diagnosis, although the private consultant said he was 80% sure. I can’t continue to pay for the private treatment, so I use this site and other resources for support and information. If you can write everything down as someone else has suggested, for reference, I have a diary and document every day how I feel, sleep, urinary and bowel habits, diet Blood pressure and pulse levels, in fact everything I feel relevant so when I had my last consultation I could dictate how my meeting went.

Good luck and reach out to this site whenever you need to.

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Good afternoon macca .. As regards scans I would not worry about them. The only Parkinson’s treatment is medication and you are on the correct medication as I assume it helps you. Parkinson’s medication helping our symptoms is the most reliable proof that we actually have Parkinson’s. You might have a datscan on the NHS but the results are never conclusive, however they are good for peace of mind. The other possible scan is an Mri Brain scan which could rule out other brain issues.

Thanks for your good advice.

Best wishes

Steve2

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hi Listercat,

Sorry to hear you are having trouble with your dosage and can’t get an appointment until next May. This aside I would say you should always take your tablet approximately 30 mins after eating something as this aids absorption. It sounds like your first two doses are timed quite well but maybe take the third a bit sooner. At your next meeting see if you should be on 4 doses a day.

I have been on madopar 4 times a day at a higher dose for 5 years and this seems to work. Unfortunately we are all different in our requirements, and it’s a shame that some people use this forum to harp on about their own issues rather than giving helpful feedback. All the best Hemyock

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Hi Hemyock, thanks for your post but your last sentence is a bit harsh, people may go off topic a bit, but I think all posts are helpful in their own way. Someone may see something in a reply that applies to them, so that is helpful?

This is a great forum for those with PD but also their wives,husbands, carers. Anyone who replies to a post has taken time to compose and think about it. So therefore regardless of what is said it will be a help to that person.

Thank you also for your helpful post x

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Hi Listercat,

Several things in food can interfere with absorption of levodopa, including iron and protein. I usually try to take my meds on an empty stomach at least 30 minutes before meals. So far I’ve been lucky, no nausea, but then again I’ve always had a cast-iron stomach. good luck !

brewmaster

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That is really helpful advice keeping doses evenly spaced and tracking symptoms makes a big difference. I like the idea of writing questions down too; it’s so easy to forget things once you’re in the appointment.