I have just started on Opicapone 1x daily , I have advanced PD and my Madopar was hardly working at all. Was having very little ‘on’ time and was suffering badly with Violent tremors and pain virtually all the time. On Madopar 3hrly & 1 Rit…Patch daily , since starting Madopar 9 years ago I have suffered from obsessive compulsive tendencies, namely gambling on slot machines, and shopping. (Luckily I seem to have missed the weird sex obsession!)
Been on Opicapone for 2 weeks, it’s a miracle drug, my tremors have virtually stopped and I feel amazing., I am actually going out for the first time in months. BUT…. Obsessive compulsive behaviour has gone off the scale, am wasting money and can’t get a grip on it.
Has anyone else suffered side effects like this and how did you manage it…???
Hi Janicka
I am sorry to hear about your obsessive compulsive behaviour and hope someone can help you with that. Like you, I have had PD for 9 years and would like to know exactly what meds and the amounts you were taking before you started Opicapone and what you are taking now. I have been reading older posts which are suggesting that Opicapone is a miracle drug. How did you manage to gamble if you didn’t go out. Did you do this on the Internet?
Hi, my hwp was on 3hrly madopar and his on time was reducing, he also started Opicapone last year, which was really helpful but we had to cut madopar back to 4hrly as it enhanced its effect, thats when the compulsive side effects can come on. He was fine after we did this. You might want to liase back with your doctor or nurse who prescribed for advice so the compulsions dont get too out of control. Its great you feel better though, might just need to tweak the daily dosages
As Jandc says you need to talk to your doctor/PD nurse. and they can fiddle with doses.
Are you on Rotigotine patches? Usually obsessive behaviours can be a side effects of dopamine agonists of which Rotigotine is one. It could be that opicapone is enhancing that effect.
Interesting. I am being weaned off Pramipexole and put on to Opicapone because of the compulsive disorder caused by Pramipexole! My OCB is overeating. My tremors are increasing exponentially with the decreasing dose of Pramipexole, despite the increase in Opicapone.
Probably best to have a medication review. There may be a need for more l-dopa as the agonist has been withdrawn.
Pd nurses are reviewing by phone in two weeks, though can contact them if symptoms deteriorate. Its hard going trying to work out whats what day to day, as symptoms do vary, but your right about agonist withdrawal possibly causing reduced mobility . PD nurses summary was. There is no easy fix, which is true. Nothing in PD is straightforward
I do not have a Parkinson’s nurse. I see my neurologist twice a year but more often if needed. It used to be 4 times per year but I really do not need t see him that often. As I also have spinal degeneration he also arranges appointments as needed with neurosurgeons. I was diagnosed and remain with the National Hospital for Neurology and Neurosurgery for my PD and spinal care. A blessing that I happily travel for - as I moved from London where I lived at diagnosis to Lincolnshire and now Norfolk. It is great that we can choose to be cared for at any hospital.