Hi everyone,
at my recent Parkinson’s nurse review i reported that i had been experiencing increased involuntary movement and this seemed to be happening approx an hour before my next medication was due. I was prescribed Opicapone by my Neurology consultant. My medication up to then was 2 x 25/100 Sinemet 4 times daily plus a slow release Sinemet at bedtime. I was told to take 1 Opicapone 1hour before bedtime. The first day after starting the Opicapone i had queasy feelings at various points of the day, the next day i had painful indegestion for several hours. The next day i experienced total upper body spasms at various times these lasted for 20 - 30 minutes. This was Christmas eve so i could not phone the helpline for advice so i decided to stop taking the Opicapone.
A few days later i did phone the Parkinson’s nurse and she managed to speak to the consultant, i was advised to reduce my Sinemet medication on the 2nd and 4th dosage from 2 tablets to 1.5 tablets and start the Opicapone again. So far symptoms seem to have settled down. Has anyone else had similar experiences with Opicapone?
Hi
I have been taking Opicapone for about 3 years. I found it helped with the wearing off symptoms that I was getting prior to its prescribing. I was warned that I might need an adjustment to the amount of Madopar that I was taking.
I found that I could nearly half the dose of Madopar as I started to get Dyskinetic when taking the original dose. My head was jerking all over the place.
With the assistance of my Parkinson’s nurse I played about with the timings and doses to find what worked best for me.
It must have been worrying to happen over Christmas.
Hope it is still improving
Thorny
Thank you for your reply Thorny,
I think i need to “play” about further with my dosage of Sinemet as i am at times still having quite a bit of involuntary movements. I will give it a bit more time to settle down but think i will be contacting my Parkinson’s nurse.
Decor8
When I first started taking opicapone ny dyskinesia got worse. Since then I have reduced the amount of sinemet by quite a lot. I now have no dyskinesia but do still have quite a lot of off time between tablets.
Hi. I stopped Opicopone 2 weeks ago. I was suffering a great deal from Diskynesia and taking too many drugs for my liking. I haven’t had any side effects from stopping the opicopone, but the diskynesia has virtually stopped. When I saw my consultant he said he agreed with me. I haven’t reduced any other drugs, but I am considering stopping Safinamide. I hope you make the right choice for you.
Regards
Jackie
Thank you Jackie for your reply. Its still early days for me with Opicapone, so i will reduce my Sinemet as directed by my Consultant and see how it goes.
Hi decor8, I, too, noticed spasms when starting Opicapone. I stopped using them after a short while but tried them again more recently. I take about half the amount of Sinemet that you take and didn’t change that dose when starting Opicapone.
Previously my tremor was really distressing, especially as it kicked in almost every time the Sinemet tablet wore off - i.e. about 4 times each day. So I tried the Opicapone again, and kept with it. Overall it has helped a lot. It seems to make the Sinemet last much longer and it’s now easier to get through the day.
I still have reservations about whether I should have been prescribed Sinemet in the first place - I’ve warned about Sinemet in another thread last year.
Hi PD patient,
Thanks for your reply, yes I have stuck with the Opicapone, I have been taking one a day for nearly 4 months now and definitely find i dont have the "off " times so much now.
I had a horrendous experience with Opicapone. In order to try and level out early and/or random weasring off of the meds, I was prescribed one 50mg tablet an hour before beddtime and before I took 2 slo-release co-caraldopa. There was no immediate negative effect and initially I found that on some occasions the meds did not wears off quite so quickly However, then about two hours after taking the med, I started to experience a feeling of lack of control, of whirling backwards through a void, seeing myself from the outside and unable to control what I was doing. I felt that unless I held onto my husband’s hand, I would be whirled backwards into the void and there would be no return. I lost all sense of taste, felt generally listless and anxious. This all became much worse but it took me some time to cotton on to the fact that it could be the result of the Opicpone. One awful night, on a bank holiday, we phoned the NHS and although they were primarly trying to find out if I was having a stroke, they did allow that it could be the medication and said they would notify my GP. This was done and first thing on the Monday morning the GP phoned, I explained it all and she said to stop the Opicpone “at once”. I did and although I reverted to pre-Opicapone wearing off, in a few days, I was back to pre-Opicapone and could live with myself. I will never, ever take Opicapone or its like again - I think I was a hair’s breadth away from losing my mind and from being sectioned. The whole experience should have been better monitored but we are in an area that has abismal PD facilities-. one consultant, who is unimaginative and hidebound in his thinking, and a newbie PD Nurse - a newbie to this country and a newbie to PD - the NHS really knows how to loook afer those with PD!