Opicapone

has anybody been put on the one-a–day drug Opicapone?. I am due to be transferred over to it soon and wondered if anyone had any info on it. I am currently on the Accordance trial which ends next week and I go back to stalevo, then I go onto Opicapone prior to my DBS.

Hi Roberto,
I’ve been on Opicapone for over two years now. In my view it is the safest and most effective of the COMT Inhibitors. It’s main purpose is to help levodopa become dopamine inside the brain and make it stay in the synapse.
Don’t expect any miracle cure but it does work reasonably well in reducing switch off time and severity.
Like most drugs fighting this blasted disease it varies from day to day in effectiveness. It’s a useful addition to Levedopa.
One quite significant side effect is that it may increase dyskinesia. It has in my case but it varies so much depending other factors within your total symptom profile. Hope that helps?
Good luck with the DBS. I’m 81, so too old to have DBS.
Jules 77.

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thanks for that Jules, What drugs were you on before going on to opicapone? does it last the full time it is supposed to and have you reduced your other drugs. I don’t have dyskenesia but I am having real problems with falling at the moment, which is really starting to annoy me.

Hi Roberto,
I wasn’t on a COMPT inhibitor before Opicapone. There were two available, one had very mixed reports. The other, the patient had to have a kidney function test every three months. I refused it.
If you google Parkinson’s, headaches and dizziness there is loads of info, particularly good is the Parkinsons. UK website.
I would just add that sudden turning movements are a factor. With Parky ‘s always remember “THINK AT EVERY STEP, DON’T RUSH”.
Jules77

Hi Roberto,
It’s dozy Jules again.
I didn’t fully answer your follow up question.
I was and still am on 1,000 mg of Madopar (which is Levedopa plus Benzedrine). I have reduced slightly my Madopar intake but have managed to increase the time between doses by an extra half hour
I’m not too clear how long Opicapone should last but one assumes 24 hours at a linear rate. With Parky’s drug effectiveness is somewhat problematic as everyone’s physiology is different and every day is different.
Parkinson’s UK have yet to develop a suitable crystal ball.
Regards,
Jules77

I have been on entacphone 4 × a day tried this new drug but stayed on my entacphone have heard great feedback cuts down the amount that’s got to be a good thing, i ve had dbs 7yrs gave me my life back but you’ve got to be prepared to work with it exercise is one ,diet all the best

Are you still getting much benefit from DBS now?. I have no problem with exercise. and have a decent diet. I m prepared to push the boat out if I need to. Do you know how betty blue Is coming along I have messaged her, but nothing back

If I turned off my dbs I would be like a ragdoll don’t know what I’d do without it ! Would not want to contemplate, not a big fan of this new Webb site liked the old one ,haven’t heard from BB at all since they changed this forum, suppose I will get hang of this site all got to move on with the changes

Hi Roberto, I’ve been on opicapone for a couple of years now with no problems, I was taken off stalevo as it wasn’t doing much for me and I was switching off frequently plus it seemed to be going straight through me literally & the colour of my urine was bright orange which was embarrassing when having a pee in a urinal especially if the splashback wasn’t doing the job lol! I’ve also had the dbs op back in October 2017 which was a life changer for me as I can make plans to go out & not cancel at the last minute due to freezing coming on which was a horrible feeling. Good luck with your dbs op which I hope will be a life changer for you as well.