starting another medication

[caitilin]

Anybody have experience with Ongentys?

Thanks for any info.

[michelagvolpe]

Yes, I take it since 1 year and it seems that helps levodopa to have longer effects. No side effects, I take it at 8.30am after 1h30' from C/L.

[00Mark]

Hi Caitilin

I started ongentys (AKA Opicapone) about six months ago and I do think it helps to prolong the effects of my levodopa meds.

It's supposed to cause drowsiness (although I haven't noticed that personally) so my doctor told me to take it at bedtime.

I haven't noticed any negative side effects, but it does make my urine yellow!

[Lorraine33]

my hwp took oppicapone - it helped enormously with his motor symptoms; mobility and balance. However, he had hallucinations which after five days were quite bad, he asked who I was. Within 12 hours of stopping it the hallucinations had gone but so had the motor improvements.

This does not always happen. Usually it is tolerated well. Good luck

[caitilin in reply to Lorraine33]

Thank you , Lorraine. I take 800mg Immediate Response C//L at two hour intervals daily; my last dose is at 9pm. Then, I take two tabs of C/L 25/100 extended release to carry me through the night until 7am. This regimen was working well for me, with almost no “off” time.

At my neurologist insistence, I tried the Ongentys; and within 20 hours of taking it while decreasing two doses of C/L 25/100 . Just decreasing the 2 doses of C/L threw me into “off “ time struggling with PD tremors /external and internal. All of this was accompanied by an exhausting full day of fluctuating dyskinesia. I was also experiencing audiovisual hallucinations long into the night. I think I was having side effects from the Ongenty.

[JayPwP in reply to caitilin]

800mg every 2 hours? Or total per day?

[caitilin in reply to JayPwP]

800mg of c/l 25/100 immediate release per day (taken every two hours)

Plus, two tabs of c/l 25/100 extended release at bedtime

All totaled 1000mg of c/l per day

[caitilin in reply to JayPwP]

I’m 7 years in.

[childsplay]

Yes, Ongentys (opicapone 50mg 1/day).

A distinct and unpleasant tightness across my chest, confirmed by ceasing and re-starting this med several times.

No longer taking it, nor the related Comtan (entacapone 200mg 2/day), which causes similar but significantly lesser side effect.

[caitilin in reply to childsplay]

Thanks for your feedback. I find it interesting., I took entacapone several years ago; and experienced a similar response . I felt like I had a metal vest on that was squeezing my chest muscles resulting in short, shallow breathing, nausea and backache.

[pearlette]

Started using it 18 months ago. Kept forgetting to take it as I work full-time. There was no easy window free of

Levoopa

Once I worked around it I have found it useful and reduced Levoopa dose by 20%

[VedicGems]

Hi Caitlin, I had been taking Ongentys for about 6 months and the cost was too much and my neuro doc switched me to entacapone. I didn't like entacapone and switched back to Ongentys. The back and forth with a few days down time between meds knocked me for a loop for weeks! I really like Ongentys. I actually take it at 5 am, no side effects, no fatigue.