My husband was given Opicapone about 18 months ago but stopped taking it for some reason. He started taking it again just over a month ago. He found immediate improvement with it eg. not having to go to the toilet so often during the night but he is finding it difficult to get the correct dose. It does say you may need to reduce your levodopa so he started using Mucuna along with Sinemet 25/250 and at first we were seeing good results. We are abroad at the moment and so more active than usual. The past few days have been a nightmare for me. He has had lunches which we don't normally do yet getting dyskinesia after he has eaten, the opposite has usually happened in the past. When he is walking I am having to drag him back. He pulls like a cart horse yet I know if I let go of him he would fall which he has done about 4/5 times over the past 10 days. He also seems to be a little bit aggressive, slightly more volatile than usual.
My husband has had DBS so this is complicating things a bit because he needs to get his settings and meds complimenting one another. I realise only people on the forum from the UK might have advice about this but any is valued.
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JeanieBeanie
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Opicapone is a COMT inhibitor. This means that it slows the metabolism of levodopa, leaving more of it to be converted to dopamine.
Enatacapone is an established drug doing the same thing. It is more usually found in Stalevo where the entacapone is packaged with levodopa and carbidopa.
Stalevo boosts the levodopa component by about 33%, so 75 mg of levodopa/carbidopa/entacapone has a similar effect as 100 mg of levopdopa/carbidopa.
I haven't been able to find a similar scaling factor for opicapone. One paper, unfortunately behind a pay wall, says:
"When compared to entacapone, both 50 and 75 mg opicapone presented a significant increase for the levodopa AUC."
Does the dyskinesia appear about 30 minutes to a hour after taking a levodopa dose? If so, it is likely to be levodopa induced dyskinesia. You should discuss with his consultant as to which way to go forward. Options include:
- go back to the previous regimen
- decrease levodopa dose;
- move from opicapone to entacapone.
You write "It does say you may need to reduce your levodopa so he started using Mucuna along with Sinemet 25/250". It seems to me that it mistaken to add Macuna in circumstances where you want to reduce levodopa.
It is unclear to me how how these symptoms are related to his falling. I suggest that you discuss this with his consultant.
Thank you so much for your link. Apparently there is a 25mg dose which we may ask the doctor for. Having had DBS does definitely complicate things more.
I'm reading from a similar hymn sheet to John. You need to speak to the consultant. But I'm also confused re: adding the mucuna, are you saying you've suddenly replaced a 250mg sinemet with mucuna? If this is the case, you've suddenly dropped the total daily L.Dopa and the problems may well be due to this. The Opicapone is far better, in my experience, than Entacapone but as always it's horses for courses.
There is a lot going on here Jeanie and you need to have a consultant involved and he needs to know 'exactly' what he's taking and when.
Thanks Nigel. He hasn't taken the Opicapone for 3 days now and I can see an improvement. The problem has been it has been making the levadopa work too much. Maybe we try again once we are home.
No. It was causing too many problems with timing of his meds and dyskenesia because he has had DBS. Try it if you are offered it though. One for bed at night.
Bingley, West Yorkshire. Are you still using Mucuna Powder? The product we used to buy from Ebay became unavailable but I have found a great one very reasonably priced at Natures Root.
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