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.
Just started on Opicapone last Thurs. The leaflet suggests adjusting other meds initially. I’m taking 6 Sinamet a day, how do I balance?
It takes time to get your meds and dbs right, i found entacphone a better med for making me stay on longer yes your pee is orange but who cares .All so Azilect was a life changer.My pd meds are Azilect, sinemet & entacphone also had dbs for 7yrs have a chat with your dbs nurse, i found them my best port of call.Hope everything works out for ie excerises are a top agenda, i go to my local fitness centre where I do excerises in the pool & sauna to help with my muscles.
I have been put on Opicapone,been taking it for two weeks and it doesn’t help at all, in fact it makes things worse.Has anyone else had this problem?I know some drugs do this till you get used to them,is Opicapone one of these?Is it worth carrying on or contacting P D nurse.
I was put on Opicapone in September,I couldn’t tolerate it ,I tried for 2 weeks all my Parkinsons symptoms became worse. I saw my PD nurse , and told her I was going to stop taking it she got in touch with the Consultant who prescribe ,I got an email telling me to stop the drug and double up the Amantadine I was on ,and I feel so much better back to my PD self!! We are all different as to how we react to medication contact your P.D nurse.
Shakycat
I didn’t think that dbs helped with freezing
Hi Roberto, DBS doesn’t work for everyone but for me it has given me a much better life. I now take half the medication I used to as the DBS neurostimulator sends electrical signals to the parts of the brain that control movement constantly so now I may slow down to a slow walk or shuffle until the rest of my medications kick in but I don’t completely switch off to the point of being glued to the spot. I dread to think about what I’d be like now if I hadn’t had DBS.
I have done the same shakycat,after two weeks I had had enough, my usual symptoms were worse,and it got to where I couldn’t sleep,eat,drink,walk, talk etc,and on periods were non existant.My wife phoned the PD doctor who after hearing about the problem said stop taking it immediately.I am slowly recovering but its taking time… shunterken.