Opicapone..feeling a bit woowooo...

[SpringSong2]

Hi, I was prescribed Opicapone to extend my 'on' time after trying Entacapone which had made me nauseous and unable to eat.

The Opicapone seemed to be a better candidate because of only needing to take it once, at bedtime, 10pm for me, rather than with every Madapar dose . I found before too many days of taking Opicapone at night that by 1pm (could almost check my clock by it!) the following day I'd start to feel a bit lightheaded, a bit woowoo, over-emotional - like people I've seen who've had a few drinks and become really effusive and everyone's best friend. Another post I saw on this forum (but can't find now) said it was like being a teenager high on Ecstasy!

The sensation wasn't all unpleasant, I found myself quite amusing at times, without actually being so I'm sure but it became tiresome. Even my GP could hear the change in my voice over the phone and my partner found it disconcerting, wondered who this strange woman was! It would last until the evening. I didn't notice any improvement in my on/off time which had been the point so stopped taking it a week ago. I'm hoping it will wear off completely, it's still affecting me at the moment.

I'm not sure if it was this that also affected my eating, appetite etc. but I've been really off eating for some while.

[gaga1958]

how much time/weeks did you give it a try? did it have an effect on tremors?

[MarionP]

Well this dose might be adjustable by amount and by time or perhaps it can be graduated to some degree.. it is a chemical designed to slow your body's breaking down or consumption of the dopamine so that the extremes of the dopamine "on time" effects are a little enhanced or maybe even extended a tad, and thus made more moderate and perhaps to last longer...smoothing. And if the pill or capsule can be divided or cut, maybe that can be adjusted to cut the dopiness, the silliness, or ebullience I guess you could call it. Or maybe with a little more time your own brain adjusts and becomes a little less sensitive. So that is something to go back and talk to your doctor about. It's normal to need some adjustment of the initial dose and schedule. And the side effect so far is not really extreme, you're not exactly running out into the street and molesting the nearest passing neighbor or delivery guy for example... are you? Or operating heavy machinery or driving (or operating, say a ferry boat)?.

.

So a big first question is is the stuff even helping? Did it have any effect on the symptoms that it was supposed to influence or change?

[MarionP]

Something interesting though... And definitely should be discussed with your doc because it has to do with mechanism and location.

This medication of yours is NOT supposed to enter the central nervous system which means it is not supposed to enter your brain or spinal cord... i.e. NOT to cross the blood-brain barrier... It is not therefore supposed to affect your mentation. It's right there in the interaction section of the medication prescribing information. AND YET, IN YOUR CASE, SOMEHOW IT IS IN THE CENTRAL NERVOUS SYSTEM BECAUSE IT'S IN YOUR BRAIN, YOUR BRAIN IS WHERE YOU'RE GOING TO EXPERIENCE EMOTIONAL CHANGES. THIS IS CLEARLY NOT SUPPOSED TO HAPPEN. Possibly, considering the 12 to 14 hour time to appearance of the effect we're talking about, it may well be an active metabolite is getting across the blood-brain barrier to have the effect on you, because the drugs Half-Life is only a few hours, whereas the downline effects last considerably more than that and may even accumulate as more and more doses are taken through the week, if it takes more than 24 hours for that downline effect to quit... and that should now be taken into account. And given the implied possibility that the effects over time could be additive if it takes more than 24 hours for an active metabolite to lessen, if it takes more than 24 hours to lessen then each subsequent dose might impose a little bit more accumulation of some effect, you may want to consider trimming back and getting that conversation with the prescriber ASAP. And also tell your prescriber that your reaction may warrant a required case report to whatever medical case reporting authority exists in your country, it's a way of tipping off doctors in the field that there may be an effect that is possible but not anticipated, you could be in "virgin territory." (Plus you might become famous!)

[6daniparky]

My husband soo had badante problems with opicapone...

[Gallowglass]

this was prescribed for me but I declined it due to reading online info that over 25% had compulsive behaviors that ruined their lives like compulsive gambling and/ or sex.

[Parkie1]

I may have been that teenager on ecstasy because I used that expression to describe my experience on opicapone. It made me feel "high", and I was exhausted from the madly increased dyskinesia. My husband rightly wouldn't let me drive. I only managed one week of it ,and it took me at least a fortnight to get back to where I was before, but my anxiety was still raised and panic attacks took weeks to calm down. It comes in capsule form and cannot be broken, so it's one dose for all. Works well for some ,but not for me !

[SpringSong2 in reply to Parkie1]

Thanks so much to all for your replies. Opicapone didn't seem to have any positive impact on my dyskinesia (Under Opicapone side effects: Very common (10% or more): Dyskinesia (17.7%) Hmmm...😏!)

I thought about trying to split the pill but gave up. I read that it only comes in 25mg tablet in Japan but the 50mg everywhere else it's available. Like most things these dosages are probably calculated on male physiques, chemical make-up etc

I've made my consultant aware that I've stopped taking it and next review is due soon.

I'm sure that was your message Parkie1; I hope you've found something that worked for you. Other than some random items I bought in Lidl before christmas I mostly just sat glued to online catalogues etc. as my version of compulsive spending behaviour; I'm a pwp so procrastination meant I never get round to actually buying anything!

Thanks again

[JerryinSATX]

I would talk to a Movement Disorder specialist as my previous neurologist had put me on Entacapone before leaving the country for a month with no doctor to handle his patients. I was having orthostatic hypotension and a racing heart when I took half the dose recommended by the neurologist. I quit taking it and my issues went away. That category of drugs is off my list forever.

[Scout222]

SpringSong2 I can certainly empathize with your recent medication experience. I have been the primary carer of my wife of 48 years for the past 18 months and because of the very nasty 'wearing off' condition she experiences from time to time we have been down both paths. The main drama with opicapone was the regular daily occurrence of bouts of nausea and dry retching plus a few of the other recorded side effects. Madopar (150/37.5 x 4 times daily) was and is the PD primary medication. Once the Opicapone was stopped the unwanted effects were gone in a couple of days. One of the hospital chemists likened her condition to overdosing on PD meds!

Some time later Stalevo was tried. Same result with loss of appetite and some facial contortion added to the mix. Same deal, meds stopped and side effects disappeared in a couple of days. Bottom line neither treatment did anything positive as far as the wearing off situation is concerned. She gets a tight chest usually accompanied by breathing problems and associated pain/discomfort. Managing it as best we can with Oxazapam and paracetamol. Took it to task with one of the neurologists we have used and he has added 1mg of Rasagiline to the mix in the middle of the day. That was about a week back so fingers crossed. A most unwanted and frustrating challenge! Trust you are holding your own.