I have been advised by my neurologist to try a drug called Opicapon, as it should help the episodes of off and on I experience every time my meds run out ,usually about half an hour before the next dose.
I am reluctant to try this simply bcause it seemed to make my brother, who also has PD worse.
Can anyone help me by telling me their reactions to this drug. This is quite urgent as they want me
to try this drug tonight. Im scar
ed to take anything that might give me hallucinations, which is what
happened to my brother.
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LinnyGee
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I take entacapone which does the same thing. The net result is to increase the duration and effectiveness of levodopa medication. As far as I'm aware this kind of medication does not cause permanent damage - if it does not agree with you you can simply quit taking it. With all that said, it does seem inappropriate for the MDs to be pressuring you.
My husband is the same as park bear. Takes Entacapone (Comtan) and we haven't noticed any side effects from it except very coloured 'pee'. He's been on it 4 years now and it extends the Sinemet. The thing is LinnyGee, you shouldn't be going off to a point where you are 'off'. Neuro's are always saying, writing on forums advising that what is most key is being 'on'. Obviously that isn't as easy as just that. But my husband started 'exact' timing doses at every 4.5 hrs x 4 times per day about a year ago. He was dosing basically on when he felt he was going off, but when you feel that, it's normally too late and he would end up off. It's amazing what a difference it has made. The Entacapone keeps it all in sync far beter now we find as well. That's just how it works for him anyway. Good luck.
LinnyGee My doctor had me try Entacapone. Opicapone is the extended release, one day version of Entacapone. If you are in the USA, insurance requires the doctor to try Entacapone first and then only after it is proven ineffective, they will reimburse Opicapone. The medication works only with Levodopa in a Parkinson’s patient and is inert alone without accompanied by Levodopa or Levodopa/Carbidopa.
If you are unsure about Opicapone, and you have no insurance restrictions then perhaps the option of trying Entacapone first is an option that you might want to discuss with your doctor anyways. Entacapone is the cheaper drug and is generic. Some patients have found success as indicated by park_bear
Hallucinations are anyways a warning label on all Parkinson’s medications which I believe is a concern even for Sinemet. So, nothing is guaranteed.
I did have dyskinesias which is very bothersome for me so I discontinued Entacapone.
HI there, I started opicapone ( ongentys, where I live ) in February 2023 and have found it very helpful for eliminating the slight end of dose wearing off periods, that I had been beginning to experience. I I find it much easier to wake up and get going first thing in the morning and feel much more normal overall. It has really smoothened things out for me. I have also been able to reduce my daily sinemet from 3 x 100mg to 2 X 50mg + 1 X 100.
The only real downsides for me are that I have had an intensification of sometimes troublesome dreams, not nightmares as such - but very vivid and sometimes emotional dreams. I also initially experienced a slight increase in the frequency of constipation, but increasing my psyllium husk fibre & water solved this issue.
For me, overall the benefits outweigh the downsides.
I should point out though that I am a 49 year old YOPD diagnosed male, hoping to avoid troublesome dyskensias. I am on Sinemet for the last 4 years.
He is only taking 1/2 dose with the first few doses of the day. If in doubt try it at a lower rate than prescribed and slowly increase if it doesn’t make you worse until you feel some improvement . Then stop increasing. No need to take a full dose if you can get by with less.
Then you have scope to still increase further if need be later.
I take opicapone since 1st of September 2023, for me it is like eating a candy: nothing good and bad happens. I'm continuing to take it until the next visit and talk to the neurologist.
But I thing that opicapone generates insomnia, so I take it in the morning.
My hwp had to come opicapone because hallucinations were too frequent and culminated in him not knowing who I was. I immediately stopped the med and within hours all was ok. Not another hallucination.
Point being, it did help with movement and freezing and getting up in the morning. Taking my husband off it ‘cold turkey’ made no difference.
No side effects either from opicapone. I take Ongentys 50mg in the morning, well before all other medications, and it helps to lengthen the ON periods of C/L a bit, perhaps by 30 minutes.
Indeed, my neurologist specifically asked me to take it in the morning, although the instructions generally say to take it in the evening. At the time, I did not ask why, I will do so during the next visit. Maybe it was because I previously had troubles with insomnia, but I can only speculate at this point.
I now had a chance to ask that question. His answer: when opicapone was first introduced, there were some concerns that it may lead to/enhance peak time dyskinesia, hence the advice to take it in the evening in order to soften the effect. Apparently, these concerns were not born out, but the advice still stands. In the end, it should not really matter whether you take it in the evening or in the morning as the effect lasts for 24 hrs. but it should be taken more than one hour before the first dose of LDopa.
So how does this differ from Rytary in effect? has anyone tried both? and, does anyone use entacapone with Rytary? My husband just started Rytary but still has some off periods, even with pretty regular dosing times.
May I ask a question please. I asked my neurologist if I could add opicopon alongside my Madopar to extend ON time. I was told I was not on a high enough dose of Madopar for the opicopon to be effective. I take 25/100 every four hours with extended release at bedtime.
I was actually part of the study for entacapoxne. I noticed an improvement. When the study ended I could then have it prescribed but it was crazy expensive so I ended the study "cold turkey". It made me crazy emotional for about 48 hours. A few months later I checked on the drug cost again and it is now practically free. who knows.....
I am taaking it again for over a year but like everything else, even if I accidently miss a few doses, (traveling) I don't notice much.
I do recommend to wean off if you decide to stop taking it. I also think it is worth a try.
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