[lurkingforacure]

Our new neuro is recommending adding a COMT to our med regime. I don't know if he's wanting to add it because we take our pills, by choice, every two hours (to keep side effects down and the dosage down, seems to work), and he thinks this is inconvenient, or because this is what you do when you hit almost 5 years with PD.

I have a lot of concerns about this. He says we COULD end up reducing our sinemet because the COMT COULD actually make it last longer, thereby taking less sinemet during the day. Which is good, of course, as we prefer less meds if possible. We'd be willing to give it a go if others have experienced this.

On the flipside, it seems some here have had some cognitive issues and/or other not-so-good side effects, with COMT, and if so, could you please share?

We've been switched from this med to that off and on throughout this journey and so far, every attempted switch by a neuro has pretty much been a disaster. It's only our own white rat playing with timing and dosages which seems to have helped.

He added that if this helps extend the sinemet dose, he would want us to switch to Stalevo because it's sinemet and COMT all-in-one...when I mentioned I'd read it had some heart attack issues recently, he had not heard anything about that (surprise, surprise.)

Very grateful for any experience anyone has had with COMT, thanks.

[made it up]

Originally Posted by lurkingforacure

Our new neuro is recommending adding a COMT to our med regime. I don't know if he's wanting to add it because we take our pills, by choice, every two hours (to keep side effects down and the dosage down, seems to work), and he thinks this is inconvenient, or because this is what you do when you hit almost 5 years with PD.

I have a lot of concerns about this. He says we COULD end up reducing our sinemet because the COMT COULD actually make it last longer, thereby taking less sinemet during the day. Which is good, of course, as we prefer less meds if possible. We'd be willing to give it a go if others have experienced this.

On the flipside, it seems some here have had some cognitive issues and/or other not-so-good side effects, with COMT, and if so, could you please share?

We've been switched from this med to that off and on throughout this journey and so far, every attempted switch by a neuro has pretty much been a disaster. It's only our own white rat playing with timing and dosages which seems to have helped.

He added that if this helps extend the sinemet dose, he would want us to switch to Stalevo because it's sinemet and COMT all-in-one...when I mentioned I'd read it had some heart attack issues recently, he had not heard anything about that (surprise, surprise.)

Very grateful for any experience anyone has had with COMT, thanks.

Hi there,
Comtan should hopefully extend your on time and consequently you'll end up taking less Sinemet.
Stalevo I'm sorry I can't help you regarding cardiac problems except to add I haven't heard anything.

[scotch1]

I have been on stalevo since it was available.In my case it has extended my on time from about 2 hrs with sinemet to about 3 hrs.The amount of levodopa remained the same.I am aware of a study indicating higher incidence of heart attacks amoung those studied.I wonder if the same would hold true with sinemet alone.That is increased heart attack risk.

[lindylanka]

Have been on entacapone with sinemet for a couple of years now, and it has helped a lot, and have reduced sinemet by 25%. No cognitive stuff with it - my pd nurse thought I looked undermedicated, I didn't realize how true that was till I took it, had a bit more dystonia at end and start of dose, so tried taking slightly less dopa and it settled down quite quickly. I stay on for longer, but when I go off it happens quicker. Given current concerns over stalevo perhaps it would be good to have a good cardio checkup if you do decide to take it.

[rosebud]

I take my meds very two hours, and it has been 15 years on Sinemet, with entacapone added in about 5-6 years ago. No dramatic improvement noted, but didn't seem to hurt either. However in Canada it only comes in 200mg pills and if you take it with every dose of sinemet thats a heck of a lot of entacapone. I take 4 per day...basically every second dose. I had a friend who said it scared him because of the color of his urine. I'm considering giving it up because a lot of anything always turns out to have some side effect after a certain period of time, even a subtle one.