Opicapone

[Daisies22]

Hello everyone,

I was wondering if anyone has taken Opicapone 50 mg and if they have experienced any side effects.

I have tried both 50 mg and 25 mg but overdosed with both and ended up in A&E, where I had a terrible stay but that is a separate story.

When it was prescribed to me I was not made aware that I would have to reduce the total dose of Madopar I was taking. Being so potent and long-lasting led to the overdosing events.

I was wondering if people who have taken Opicapone have been given any instructions on how to scale down the amount of levodopa they take per day. I would be grateful if you share this information here.

Thank you in advance.

[Scout222]

Some time back it was prescribed for my wife (long term PD) by the neurologist of the day. Not long after she experienced attacks of quite severe nausea and being uninformed on a number of fronts I was using a few educated guesses to manage same with an anti anxiety medication being the most useful however after a number of weeks I was fortunate in receiving some helpful advice from a hospital chemist who, based on supplied data, suggested the overdosing you experienced. Stopped the medication and the nausea disappeared. Hanging out for one of the new medications mentioned on this forum to extend the wearing off period. Apart from other meds patient was taking 1.5 madopar 100/25 pills up to yesterday (x4 daily including a slow release cap at the end) and having much chest discomfort at the 3 to 3.5hour point. Currently trying 1 pill every three hours (5 times starting at 0700) which increases the daily dose to a degree and it seems to be having some effect. Watch this space as they say. Not a lot of help with your problem I'm afraid and particularly as every individual is different. we wish you the best in your endeavours.

[Daisies22 in reply to Scout222]

Thank you so much for contacting me and for the kind words!It is really helpful as the Paramedics misinterpreted the situation and tried treating me for a panic attack, and shouted at me when I was not doing as told.

It might have looked to them as a panic attack but they didn't listen to the patient and were behaving as big bullies.

It will take me weeks to recover to my pre-opicapone incident.

And how the same Neurologist could overdose the same patient with the same medication twice is beyond me.

Best wishes,

D.

[park_bear in reply to Daisies22]

Sadly, A&E, or the emergency room / emergency department, as these are called in the US, is just not a good place for Parkinson's patients. They're not trained in dealing with Parkinson's. Unfortunately yours is not the only terribly adverse experience that has been reported.

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Perhaps this will be helpful regarding dosage adjustment:

tga.gov.au/sites/default/fi...

"At steady state, in healthy volunteers, following multiple oral administration of immediate-release 100/25 mg levodopa/carbidopa administered three times a day, 10 h after an opicapone 50 mg evening dose the mean extent of levodopa systemic exposure over 24 h (AUC 0-24 ) significantly increased approximately 53% compared to placebo", which, in theory, would mean taking 2/3 of your current dosage to get the same effect.

You're in a tough place with regard to this because for you getting it wrong is disastrous and it's going to be tough to get the dosage right on the first try. Another alternative is to slowly increase your opicapone dosage, but that means opening up the 50 mg capsule and weighing out low milligram amounts which is not easy either. I suggest trying entacapone, which does the same thing but requires a much higher and more frequent dosage to be effective, and therefore much easier for you to titrate up.

[pdpatient]

I feel bad for you Daisies22 . I feel sorry and feel bad for you. Did your doctor not entertain Gocovori / Amantadine?

As for the treatment from the paramedics / EMT's, it is indeed not acceptable. No way to treat patients by yelling at them. You should carry a card that says that you have Parkinson's and that you should be treated with protocols appropriate for it.

One golden rule of dealing with Parkinson's if ever in doubt is to lower the dose of medications when you start to experience issues. You should lower the next dose to get relief. Chances are that abnormal responses to medications for Parkinson's is an indicator of too much, not too little. This is true at least in my case.

[Daisies22 in reply to pdpatient]

Thank you for your kind message and for the sympathy you show to a person who you have never met. These are human traits which my Neurologist seems completely devoid of.

Re Amantadine, I've never had a chance to discuss.

I asked for Entacapone but got a prescription for opicapone,which is very difficult to control.

I entirely agree with you - I need to lower the dose of the levodopa. The question is: can I do it without the help of another medication? So far I have been failing.

[Parkie1]

I only took opicapone for one week. It made my feel very anxious and overmedicated. I looked like a teenager on Ecstasy tabs! Spacing out the cobeneldopa doses didn't help. I had no "wear offs" so possibly it would be effective for someone who needs a bigger c/ b dose ....I take only 50mg x 8 . It took me 2 weeks to recover from the overdosing effect.

[Daisies22 in reply to Parkie1]

Thank you so much for responding..What you describe is exactly how I felt, especially the "no wear offs". I didn't know that one could have 15 hour long period of time feeling completely normal. I too noticed that the recovery time is much longer. All adverse events I experienced were exaggerated as if I was looking through a magnifying glass.

I still cannot decide whether to give this medication a third chance or not, the extremely long no wear offs time is very tempting but getting the correct dose is virtually impossible.

[Parkie1]

I may consider trying it further down the line of PD progression. It certainly works! but it's just to powerful for me at this stage. I resorted to taking rotigotine patches 4mg. Not ideal, they make me feel a little bit weird, but I sleep better and they stretch out my doses by 20 to 30 minutes later in the day.