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May 2, 2024
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A MyParkinsonsTeam Member

All mg are L-Dopa/carbidopa.
Started on 1 x 100/25 mg slow release every day 9 years ago. Difference between taking it and missing it was noticeable, but not severe.

Now I'm on four doses (every 6 hours) of 1 x 100/25 mg slow release and 1 x 100)25 mg normal release, plus Entacapone 200mg. I find I'm waiting for the next dose (ie feeling symptoms) for an hour or two before it's due.

This means I'm on 800mg L-Dopa daily. UK guidelines apparently don't recommend more than that. I'm considering switching to all normal release as the bioavailability is higher. It's also possible my anxiety is actually a side effect of the coating on this particular (Sandoz/Caramet) CR tablet. I'd like to test that vs the original half Sinemet I used to take, but I think that's very hard to get since the manufacturer (Merck, I think) discontinued it.

It's heartening to hear that higher L-Dopa doses can be tolerated (and there is proper research to support this - https://bmjopen.bmj.com/content/2/6/e001971), but convincing the healthcare professionals in the UK to go against guidelines is like pushing custard uphill...

Carbidopa/levodopa dose elevation and safety concerns in Parkinson's patients: a cross-sectional and cohort design
Carbidopa/levodopa dose elevation and safety concerns in Parkinson's patients: a cross-sectional and cohort design
May 3, 2024 (edited)
A MyParkinsonsTeam Member

My husband takes three different strengths and types. But it still wares off making him nearly immobile 90% of the day. But he's been on the carbidopa levodopa many years.

May 2, 2024
A MyParkinsonsTeam Member

I take 1200 a day and I'm fine

May 2, 2024
A MyParkinsonsTeam Member

Have you looked at my story ? Very careful consideration Matthew . You will be fine, just be on your guard for heaven's sake ...... 🙂

May 2, 2024

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Olive Branch, MS