When madop doesn't work

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1

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 :blue_heart:

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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

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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.