Hello
My husband has had Parkinson’s for 13 years and has now been given opicapon to try, he has had a good result in the second and third week of taking it which was wonderful but has now gone back to worsening symptoms, even slower movement and stiffness and difficult to find any energy. Has any one else had this medication and what results did they get?
Hi Bella,
Thanks for writing in.
As far as I know Ocapone has to be used in conjunction with Levodopa or another similar medication.
I do know it has a number of bad side effects, as you know all medication has side effects, however this seems to have more and more dangerous side effects that normal.
Perhaps having another chat with his neuro would make sense.
Hi Bella
I’ve been on Opicapone for around 6 months and glad to say it works for me. I take it in conjunction with Co-Careldopa. Not sure exactly how it works but it extends ‘the working life’ of the Co-dopa. I do know that in some cases it works that well, sometimes the other medication e.g. co-dopa dosage needs to be reduced, and on occasion, increased. However, it could also be the side effect of another drug.
Speak to our PD medical team, I’m sure they’ll have the answer.
Cheers
D
Hi. I was diagnosed in jan last year, and have been taking 4 madopar a day and 1 controlled release madopar at bedtime. I had my 2nd visit to diagnosing doctor on 12 Feb this year. He prescribed me opicapone at night which i have been on since that date. I feel it is not suiting me and would like to hear others experiences. It made me quite dizzy and nauseous the first few days, and although that has passed, i still get periods at various times every day where i feel sickly and headachey/fuzzy and tired. So thats why i think it may not be suiting me? I’m seriously thinking i need to come off it? Or does it take more than a month to get used to it? Any feedback would be appreciated.
Hi, my husband has been on Opicapone for three weeks now along with Madopar 4 times daily.
It has really helped him with the anxiety episodes and internal tremors he was getting before on rather long off times.
However, still looking out for side effects - so far it has been good. Can’t say his energy levels or slowness have improved. Just a lot more relaxed all round. A bit more constipation!
Hope you can get the right dosage and what really works.
Thank you for your messages really useful. I’ve just asked hubby how he is today and he replied if he could go back to week three when opicapon was good he’d settle for that, we’re going to persevere for a bit longer, may be a visit to consultant in the end.
Hi Bella,
My husband was dx at 41. He’s now 64 so he’s been on a lot of medication!.
Initially he was on Sinemet Plus and Entacapone but has been on Opicapone and Sinemet for ooh must be 5 ish years now. Essentially it works the same as the Entacapone does by opening the pathway to the brain to allow more of the Sinemet ( or whichever L-Dopa your hubby is on) to be used as a lot gets lost and absorbed before it gets to where its needed.
Whereas Entacapone was taken with every dose, Opicapone is taken at night with his last dose before bed.
I certainly haven’t experienced any side effects with Opicapone but Parkinsons has its own natural ebb and flow and food can have an impact ( especially protein) and make symptoms feel worse, as can a poor nights sleep or just eating too close to a medication dose.
I always use a 3 month rule - if its no better I go back to the neuro and ask of a reassessment of his drugs.
Parkinsons meds takes some figuring out so don’t think you have to stay on the same medication package. It can always be tweeked until the right combination is found.
I hope this helps a little 
Hello,
Bella’s post and the replies have been very interesting.
Since diagnosis 4 years ago my Madopar dosage has increased to the current 200 mg four times a day plus 200mg Madopar CR before bed.
On 16th December I took my first 50mg dose of Opicapone and noticed a definite improvement regarding tremors.
However the side effects also appeared and increased on a daily basis until by Friday 19th December I was feeling sick, had constipation and no appetite.
I stopped taking Opicapone and 2 weeks later the side effects have gone but of course my tremors are also back.
On reading the replies to Bella’s post I am now wondering if I should have carried on with the Opicapone in the hope that the side effects would fade.
Has anyone had a similar experience and tried a lower dose with success e.g., 20mg or perhaps went on to try a different ‘capone’ drug successfully?
Graham