I have been on Madoper for a year now and tell my neurologist that it makes no difference to me accept that a higher dosage gives me diarrhea.
Does anybody else have this double problem and if so please let me know what you do for it
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Hi @Nigel27, welcome to the Forum. We hope you find it useful and enjoy connecting with the community here.
We’re really sorry to hear you’re having difficulty with Madopar and understand your frustrations with this. We have some information about it on our website which you may find useful: Levodopa (co-beneldopa and co-careldopa) | Parkinson's UK
We appreciate you’ve already told your neurologist that you’re not feeling any benefits. We also have a free helpline you can call on 0808 800 0303. Our specialists will be able to offer advice and guidance to help you and hopefully find something that works better.
We hope this helps. Please take care and reach out if we can help at all.
Parkinson’s UK Moderation Team 
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Wonderful. Thanks for your concern and help
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Hello Nige … I am 71 and was diagnosed in June 2023. I was on Madopar and found it did not agree with me so I stopped after 7 to 10 days. I have been on Co-careldopa for some time and find it excellent, although it has given me fairly difficult sleep issues, so have changed the times when I take my medication.
We are all different, some drugs work some don’t. Some have side effects some don’t.
Best of luck.
Steve2
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Thanks Steve for your reply. With no effect from Madoper, its tempting to believe that we / I may have MSA which as you know is a terminal condition, and fast too.
When my neurologist says to me " see me again in 4 months" I feel he has already written me off. Is that fair?
I’m already at stage 3, he says, so feel I wasted enough time getting nowhere.
He reckons that Madoper is the best but do you know of anything that is better than the best?
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Hi again Steve. May I ask what symptoms of PD are relieved by your taking Co-careldopa?
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Evening Nigel .. Sorry for the late response. I play Indoor bowls and without the co-careldopa I seem to have poor balance and fall over. I did try Madopar and found it did not help me.
I was originally diagnosed with Atypical Parkinson’s. So not the normal Parkinson’s.
Seeing a neurologist after 4 months is excellent. Most of us have to wait a year or two at best.
Best wishes
Steve2
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Thanks Steve for answering. I’m following your path and have switched from madoper to Sinemet.
I was taking three tablets a day of medopa. Do you have any idea what the equivalent Sinemet I should take?
My neurologist is being evasive
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Thanks for this. I was taking three tablets a day of Madopa.
Can you please let me know what I should be taking as the equivalent dosage of Sinemet?
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Good afternoon Nigel .. It is you taking the tablets not your neurologist. The neurologist I saw privately was happy for me to experiment as to when I took my Sinemet & the dose I took. Before seeing this neurologist I took 2 x Sinemet at 7am, 2 x Sinemet at 1pm & 2 x Sinemet at 7pm. This is quite a normal dose & time.
I now take 2 x Sinemet at 7am, 2 x Sinemet at 1pm IF I AM PLAYING INDOOR BOWLS THAT DAY. I DO NOT TAKE THE EVENING DOSE AS IT CAUSES INSOMNIA AND NIGHTMARES.
IF I AM NOT PLAYING BOWLS AND STAYING IN ALL DAY I TAKE NO PILLS AT ALL.
Clearly we are all different & what works for me might not work for others. My Parkinson’s symptoms are gait freezing and poor balance. I shake when eating but eating on my own it is not an issue.
For you I would start your Sinemet 1 pill x 3 times a day. See how that goes.
Steve2
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Thanks again. From your dosage it sounds like you are at stage one. Doctor tells me I’m at stage 3. I don’t have any shakes but I have quite serious balance and gait problems plus stiff muscles and constipation. I assume the pills you are taking are 25 /100.
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My diagnosis was for Atypical Parkinson’s. I have bad gait freezing but they say this might not be Parkinson’s. I take dose of 12.5/50 Co-careldopa pills.
Best wishes
Steve2
I have concluded that finding the correct dosage is a matter of trial and error. Then there is no need to ask a doctor. For me there is no noticeable relief of symptoms whatever I do.
But how do you know if you have taken not enough or too much of a medication? Neither madoper nor Sinemet work for me so does that mean I’m an MSA victim? Or how do I progress from here?
BTW, my doctor doesn’t seem to be that interested. He impresses on me that Parkinson’s is not curable and knows I won’t be visiting him for much longer.
I have concluded that finding the correct dosage is a matter of trial and error. Then there is no need to ask a doctor. For me there is no noticeable relief of symptoms whatever I do.
But how do you know if you have taken not enough or too much of a medication? Neither madoper nor Sinemet work for me so does that mean I’m an MSA victim? Or how do I progress from here?
BTW, my doctor doesn’t seem to be that interested. He impresses on me that Parkinson’s is not curable and knows I won’t be visiting him for much longer.
Hi @Nigel27 we’re really sorry you’re dealing with this. Feeling like nothing works and having a doctor who seems uninterested is incredibly hard. However, working out your medication isn’t something you should be left to do alone,.
It’s clear that you need proper support and a review from a Parkinson’s nurse, GP or another healthcare professional. If you want help thinking through what to ask next, then our helpline is there on 0808 800 0303. Thank you for reaching out to us 
The Parkinson’s UK Moderation Team
Do you only see a neurologist and GP? What about PD Nurse? Maybe we are lucky where we are as our PD Nurses are superb, they are absolutely my first port of call when needed and in my experience are the ones that get things done.
I have concluded that finding the correct dosage is a matter of trial and error. Then there is no need to ask a doctor. For me there is no noticeable relief of symptoms whatever I do.
But how do you know if you have taken not enough or too much of a medication? Neither madoper nor Sinemet work for me so does that mean I’m an MSA victim? Or how do I progress from here?
BTW, my doctor doesn’t seem to be that interested. He impresses on me that Parkinson’s is not curable and knows I won’t be visiting him for much longer.
All good advice Lairie
I’m about 80% deaf so telephone and
helplines ain’t for me. My current question is what do you do when you reach end stage PD? Do you just sit at home and wait to die? Or is there something else you can do?
Hi Nigel, I’m really sorry you’re dealing with this. Experiencing no symptom relief alongside stomach issues is incredibly frustrating, but it is definitely something worth bringing up again with your care team. Levodopa doesn’t affect everyone in the same way, and when Madopar isn’t giving you benefits or is causing diarrhea at higher doses, specialists often look into adjusting the timing, trying a controlled-release option, or switching to an alternative medication altogether. Sometimes taking it with a small non-protein snack like a cracker can help soothe stomach upset, but since absorption issues in the gut can also prevent the medicine from working properly, it’s best to get a full review. If waiting for your neurologist takes too long, I’d suggest reaching out to your local Parkinson’s Specialist Nurse as they are usually much faster to contact and can help tweak your plan. Please make sure not to change your dosage on your own, but do advocate for yourself with your care team so you aren’t just stuck tolerating side effects without any real benefit.
Hi Nigel27,
We’re sorry you’re feeling this way, but you’re not alone. We highly recommend reaching out for help and support. The Samaritans are available 24/7 on 116 123, you can find alternative ways to contact them here if not over the phone: Contact Us | Samaritans .
You are welcome to email our helpline team on [email protected] and we are on hand to help.
All the best,
The Parkinson’s UK Moderation Team