About a month ago I was prescribed Opicapone 50 mg which I took under medical supervision. Roughly an hour after taking the 50 mg capsule I experienced very strong adverse reaction characterised with high pulse rate and blood pressure, extreme stiffness (rigidity), fragmented breathing, inability to initiate any voluntary movement, whole-body shaking. These are the same end of dose symptoms which I have when I am on Madopar only, but this time they were much worse, which I found inexplicable. The episode lasted about 4 hours and only then I regained control over my movements. We were allowed to leave the hospital minus the medication.The next morning I noticed that my ON period was really long - 15-16 hours and during this time I felt completely normal.
That day I had my second appointment in the hospital. My Neurologist's view, and I agree with him, was that 50 mg was too high a dose for me. We had a brief conversation and it was, rather randomly decided to try Opicapone 25 mg. I took it four consequtive days and had a completely unexpected overdose which put me in A&E with chest pain and difficulties breathing, I lost my voice temporarily, I felt really dizzy and was unable to sit in bed. Thankfully, blood test did not confirm a suspected heart attack and I was allowed to go home at around midnight.
The following four days I felt better as the 25 mg seemed to work and smooth out the rather jumpy concentration of levodopa in plasma vs time curve. I liked how I felt I hoped that the worst was over when I started having the same reactions I had to the 50 mg capsule. I stopped taking the 25 mg and tried to survive the above - described symptoms. It has been nearly a month and I am still not fully recovered. I am not sure how long this medication will stay in my system.
Apologies for the long explanation. I guess my question is - are there any other PwP on opicapone who had similar experience to mine? If you are still on opicapone how do you dose this medication so that you do not have such severe adverse effects?
Has anybody tried both Entacapone and Opicapone, and which one do you prefer and why?
Thank you in advance for the patience to read the above and for any comments you might have.
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Daisies22
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I believe your symptoms can all be attributed to opicapone slowing down destruction of levodopa in your bloodstream. Entacapone is less effective and shorter acting, which for you would be an advantage.
Thanks PB. I think your suggestion is a very good starting point. Knowing how sensitive I am to anti-Parkinson's medication I most probably will start with one per day and then will try to adjust the dose of the madopar I take, I'm desperate to reduce it as it affects me so badly.Thank you again.
Ah yes. Splitting tablets into half doses is less time consuming than weighing the content of a capsule and adjusting the mg I need. Luckily, we've found this: KUBEI USB Rechargeable Digital... amazon.co.uk/dp/B08JYPVL9Z?...
which I thought was working remarkably well!
It is just that I'm worried that if I take a pill every day, and the medication is active for more than 24 h, sooner or later i will experience the equivalent of a stacking effect which will give me another overdose.
"The mean elimination half-life of opicapone is one to two hours. Despite the short half-life, the observed half-life of opicapone-induced COMT inhibition in human red blood cells was 61.6 hours with a standard deviation of 37.6 hours."
"The elimination of entacapone is biphasic, with an elimination half-life of 0.4 h - 0.7 h based on the β-phase and 2.4 h based on the γ-phase."
"The absorption of entacapone, like that of LD, is highly variable between different individuals and exhibits high intraindividual variability as well"
"Entacapone increases the daily ON time by an average of 1 to 2 hours and correspondingly reduces the daily OFF time in patients with PD with motor fluctuations. The daily LD dose has been reduced by 10% to 30%. These positive effects are sustained in long-term use over several years
Food does not appear to affect the absorption and bioavailability of entacapone.
When 200 mg of entacapone is administered together with LD and carbidopa, it increases the AUC of LD by approximately 35%, and the elimination half-life of LD is prolonged from 1.3 hours to 2.4 hours. In general, the average peak LD plasma concentration and the time of its occurrence (Tmax of 1 hour) are unaffected"
my husband takes 3x 1/3 entacapone tablets which was seeming to work well with other things for nearly a year but he has recently been becoming over anxious again and worrying about nothing.
That might be unrelated. We have extra people in the house with all the kids back home and new kittens so I think he is struggling with the lively household.
My partner has tried both entacapone and opicapone and in both cases had a great first day but struggled to breathe on day two. I've encouraged her to try again along with a ~30% decrease in her madopar dose as I suspect the problem might be overly high peak levodopa inducing a kind of respiratory dyskinesia (if such an issue exists). I wish she could try 25mg tabs but here in Australia the only opicapone is 50mg caps. It's strange that her neurologist made no mention of the possibility of too much levodopa associated with COMT inhibitors.
For working out what’s going on, the Parkinson’s Measurement website has been brilliant. For me, Entacapone or Sastravi is around 10% ‘stronger’ than Sinemet and lasts 25% longer for the same mg of LD.
Opicapone on the other hand works like a booster and gives me around 70% more benefit from the same LD dosage, so after a few days Opicapone I needed just over half the dose of Sinemet/Sastravi/Madopar that I had been taking.
Puts your meds in, then imagine 2 horizontal lines on the graph, the lower one is where you go from on to off and the upper one is where you experience the effects of too much. Tinker with tablet size and timing to keep your blood level in between the two. Well that’s the theory….
I am also sensitive to anti Parkinson's meds. I take 8 x 50mg madopar per day, plus rotigatine patch 4mg which I am trying to reduce gradually due to increased dyskinesia. I tried entacapone 1st, and could only take one per day because it made me hyper from the very 1st tablet. I stopped it within 2 weeks. I was then given opicapone which made me even more hyper, like a teenager on ecstasy! I stopped it before the week was out and then was given rotigatine which seems to be milder. I must say that as far as smoothing out the "offs" are concerned, it's very effective,(comt inhibitors, i.e.)but it's far too strong for me. I've been trying B1 for 9 months now and think I've hit the sweet spot which is why I feel that I need less rotigatine, but if it's offered to you you can keep it to a small dose.
unfortunately my hwp did not have physical reactions but hallucinations which began benignly but after 5 days he looked at me and asked who was I. It is sad as, like you they made such a difference to the Parkinson’s symptoms.
His prof. said a lower dosage would lead to same thing . So had to stop.
1 x 50mg Opicapone caused me very similar problems and in addition extreme wakefulness and a urinary tract infection. I only managed three doses.
4 x200mg (one every 6 hours) Entacapone did not cause as severe a reaction, though apart from an initial (first day) improvement in off time of thirty minutes or so also did not provide any real benefit.
I'm in the process of transferring to Stalevo, but this effectively means I am switching from a 50:50 mix of normal and slow release L dopa to entirely normal release and I believe this is reducing my on time and possibly worsening my dystonia in my thighs.
I have had to deal with all this while living alone. It is not policy to routinely admit to hospital while assessing medication changes in the UK.
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