Opicapone second attempt: Nickosome 's... - Cure Parkinson's

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Opicapone second attempt

Parkie1 profile image
15 Replies

Nickosome 's question is useful to me too, because I have been prescribed Opicapone due to severe motor fluctuations after 6 years on Madopar. 2 years ago it was prescribed and I couldn't tolerate it ....too strong for me, but now I have few choices . . I worry that it will worsen my dyskinesia. I also want to get off 4mg patch Rotigotine which won't be easy. I take Madopar 5omg every 90mins to 2 hourly intervals.....7 or 8 per day ,and 2 or 3 100mg controlled release before meals and overnight, leaving 3 to 5 hours between the next dose when taken at night , though I think stacking occurs when I use the c/r at lunch time. I will have to reduce the levadopa when I take the Opicapone, but I seem to have been left to work that out for myself, which is OK with me , but any suggestions from anyone would be helpful

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15 Replies
Jess123dog profile image
Jess123dog

Works wonders for me, took about a month to get full affect, reduced madopar by about two thirds. I am only early stages though.

Parkie1 profile image
Parkie1 in reply toJess123dog

That's excellent, very pleased for you. I hope I can also reduce the number of tablets.

Nikosmom profile image
Nikosmom in reply toJess123dog

That’s great. Thanks for sharing.

Nikosmom profile image
Nikosmom

have you been reading the responses to my post? Like everything about this disease there are no 100 percent answers.

We have to fend for ourselves and be a one sample/ one person re search team I am telling people that my even though I am retired my full time job is managing Parkinson’s

With a background in the social sciences and art, I am not suitable for disciplined precise work

You seem to be very sensitive to the Fluctuation of your meds. I.think you are. halfway there Keep fighting and best of luck to you

Parkie1 profile image
Parkie1 in reply toNikosmom

Thank you. Yes, PD is so unique to the individual, although we can't resist comparing with fellow parkies! I hope entacapone works well for you if you choose to take that route. I'll let you know how the Opicapone goes in a few weeks.

Nikosmom profile image
Nikosmom in reply toParkie1

Good luck. Keep fighting

dan1000 profile image
dan1000

[Note: I'm a computer scientist, not a doctor ]

It sounds like you have really put a lot of work into your dosing schedules, and so on. Having experimented with this myself (of necessity), I can empathize about how frustrating it is to try and find the balance between "still-off" and "beyond-on".

My understanding of Opicapone is that it slows the body's ability to degrade levodopa, increasing the period of time that a C/L dose remains effective after being ingested. However, Opicapone doesn't cross the blood-brain barrier, so the brain's levodopa-degradation mechanisms are unaffected by it.

So a way to think about Opicapone is that for any given dose of C/L, Opicapone will extend the period of time that levodopa remains available at the blood-brain-barrier. Within the brain, the only effect that it has is that there should be more levodopa in the brain due to the higher pressure (or longer duration of pressure) at the BBB.

So, in theory, one should need to lower one's ingestion of C/L when adding in Opicapone. But ... how much?

The answer may be related to which of the three limiting factors for levodopa are in play at any given moment. If the intestines transporters for levodopa are busy transporting amino acids, the Opicapone will still be working, but the levodopa pressure will be high inside the intestine, while still low in the bloodstream, therefore low in the brain. In this case, it may be that it is ineffective, therefore no dosage change needed. Instead, avoiding the intestinal transport competition by dosing far away from meals, may help.

If the intestines are transporting ok (transporters not busy digesting amino acids from a recent meal). Opicapone will help maintain levodopa pressure at the BBB, by causing the body (but not the brain) to degrade levodopa slower than it did without Opicapone. In this case, some reduction in levodopa dosage seems prudent. Perhaps 1/3 as an experiment, if your neurologist agrees?

And if the BBB is having trouble transporting levodopa across, due to the same kind of competition from amino acids, once again the Opicapone may have little effect, so levodopa dosage reduction won't improve things. Instead, it's the old timing game again, perhaps delaying protein/amino-acid foods until late in the day, so that the BBB's levodopa transport system is not saturated.

I put an AI system together for PD patients to ask these kinds of complex questions. If you like, please give it a try at ParkiBot.com -- it's a completely free non-commercial system for the community. And if you think it needs to improve, please let me know how I can make it better.

PondGazer66 profile image
PondGazer66 in reply todan1000

Thank you for ParkiBot.com. I found it helpful.

Parkie1 profile image
Parkie1 in reply todan1000

Thank you for that very clear explanation of how Opicapone works. I'll keep to my current eating schedule keeping all protein till my evening meal. Also thank you for Parkibot. I'd forgotten that I'd copied the link to it until the mention of a similar AI system for B1 last week. Parkibot helped me find the best timing suggestions on down titration of rotigotine patch as the "usual" ones seemed too fast for me. It led to much useful browsing on many related subjects! It was time well spent, and I was impressed with the thoroughness of the research available.

dan1000 profile image
dan1000 in reply toParkie1

Thanks for your beautiful note. I wish you luck with the medication adjustment process. Never easy, yet worth it!

Dan

Nikosmom profile image
Nikosmom in reply todan1000

Wow. Very impressive! With my social science and art background I am a long way from understanding. Thanks for sharing.

JerryinSATX profile image
JerryinSATX

Please see my reply to Nicksmom. Opicapone is a newer version of Entacapone. Unless you are a young onset person or your insurance won’t pay for Rytary or Crexont, try it, but watch for side effects. If you’re eligible for DBS, consider getting it done. After DBS I have slightly reduced my meds and gained back most of my weight loss due to restrictions from ,protein when my dosing schedule was so close together.

Good luck with whatever you decide.

Parkie1 profile image
Parkie1

Thank you. Entacapone was too strong for me, so opicapone was next but was also too strong. That was was 2years ago, so maybe this time, since things have progressed it may be OK. Hoping .

Ioanh profile image
Ioanh

I was diagnosed with PD in January 2014 when I was in a stage closer to incipient. Until July 2015 I only used Azilect and NEUPRO at first the 4 mg version then I gradually increased to 8 mg / 24 hours. I did not feel dyskinesia or bradykinesia and I did not have tremors and I do not have them now except when I get angry or emotional. In July 2015 I started taking Madopar 200 mg with 50 mg Benserazide 3 doses of 1/2 daily at an interval of 5 hours.

At the beginning of this year I reached 4 Madopar of 200 mg per day at an interval of 4 hours. However, I had to change Madopar for supply reasons (Madopar is no longer imported into Romania) with ISICOM C/L - 25/250.

In all these years since I was diagnosed I have been taking NEUPRO (rotigotine) continuously but I have not increased the dose of an 8 mg/24 hour patch. I am very happy with the effect of NEUPRO but I have noticed a decrease in the effect when I apply the patch to my right arm and as a result I now apply it to my right shoulder instead of my right arm. The strategy for applying the patch for me works like this: one day on the upper right back then the next day on the left side then the next day I apply it to my right shoulder and then on my left arm then the right hip and then on my left hip and then I start over with the upper back.

At the moment I feel relatively well only having some days of heavier OFF periods. Otherwise I move, run and be active normally.

In addition to Rasagiline, Rotigitine and Levodopa, I take many antioxidant supplements, vitamins and generally recommended supplements for PD, which I alternate.

Parkie1 profile image
Parkie1 in reply toIoanh

I also find that my shoulder gives me the best result with the patch. I have dreadful circulation in my limbs, so maybe that's why. I online the effect of it though. Levadopa makes me feel normal, but rotigotine makes me feel a bit weird.

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