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!
Hi. Im on exactly the same Sinemet dosage even down to the slow release dose at bedtime. I’d noticed some wearing off normally 30-40 minutes before my next dose of Sinemet was due.
So my consultant prescribed Opicapone and was coping with it quite well until about day 4 when I had a violent reaction to it being uncontrollable body shuddering that quite frankly, scared me to death! I immediately contacted my Parkinsons nurse and she said my last consultant letter warned me that I might need to reduce the Sinemet. I fully understood that but wasn’t prepared for the reaction my body had to the drug.
As a result I’m very wary of going back onto Opicapone. Can anyone offer any advice on how to start ta taking Opicapone again and, more importantly, when to start reducing the Sinemet. Any advice would be most welcome
Hi GeorgeHA, welcome back to the Forum, we hope you find it useful. We have some information on Parkinson’s drugs here which may be useful: Parkinson's drugs | Parkinson's UK
We would encourage you to speak to your GP as they can offer you advice. Your Parkinson’s nurse should also be able to help. Alternatively, you can all our free, confidential helpline on 0808 800 0303 and speak to one of our Parkinson’s nurses.
Please do reach out if you have any questions.
Parkinson’s UK Moderation Team
Hi decor 8 i am almost identical to you meds wise.i am on 2x 25/100 sinimet which was wearing off before next dose but i wasn,t too bad but they reduced me to 1x25/100 and 1x 12.5/100 + stavelo which made me really ill from start.next they put me on opocapone but same dosage of sinimet but nothing changed apart from me having increased tremors and jerky movements.now i am back up to original dose of sinimet + opocapone from yesterday.still very jerky especially lega and head which is giving me a stiff neck.i,ll give it a few more days but if no improvement i,ll stop opacapone and just go back to my original dose of sinemet.
Hi @Stokiebaz, thank you for your comment and welcome to the Forum, we really hope you enjoy being part of the community here.
We’d recommend speaking to your Parkinson’s nurse or GP about your medication. They will be able to advise on a change of dosage or a change of medication which may help your symptoms.
Alternatively, you can call our free, confidential helpline on 0808 800 0303 and speak to one of our Parkinson’s nurses who can offer you the advice you need.
We hope this helps. Please do reach out if there is anything we can do.
Parkinson’s UK Moderation Team
Hi mother of three.found your post vey interesting.i started on just sinimet and i felt i was doing ok but because just before my next dose i was shaking a little they reduced my sinimet and added stalevo.it wasnt long before my shakes got worse and i felt sick so my doctor put be on opicapone with my reduced sinimet,again shakes got worse next step was put my sinimet back up to original dose and stick with opocapone but i,m even worse even my friends said i am jerking especially my legs and head which i never had before and same in bed which i also never had before i even had suicidal thoughts and was hoping not to wake up.as i type this i,ve decided just to take my sinimet and no more opocapone until i call my doctor on monday.
Husband with Parkinson’s has recently started Opicopone. It has definitely increased dyskinesia, but freezing of gait has improved. Husband prefers this as freezing was very disabling, I’m not sure if it’s worth it. He is also experiencing full on hallucinations, as opposed to illusions. This could be Opicopone ( according to the leaflet) or possibly just a decline in PD/start of PD dementia.