I could do with some advice please.
I’ve been on sinemet since diagnosis early 2016. Recently added in Entacapone 200mg.
Over the last few weeks I’ve been experiencing diarrohea and it’s not a bug. I can only think it’s entacapone.
Not good in the run (ooops, unintended pun!) up to Christmas. Had any one else experienced this?
Managed to speak to someone and am stopping taking it. Sorted now. D
I know this subject is 6 months old, but it seems like a good place to log my experience with Entacapone. I also experienced diarrhea with Entacapone (200mg three times a day, when I was using Sinemet CR). It went on for three months and stopped within 24 hours of quitting Entacapone. A week or so before quitting, I also had bright orange urine (which is what spurred the investigation into Entacapone’s side-effects).
I’m not on here so often these days so only just saw your post.
Your side effects sound similar to the ones I had. Mine only appeared after several months on entacapone so it took me a while to put two and two together.
I’ve felt a lot better since stopping it. Had to alter my sinemet doses but that was no problem.
It has made me very wary of trying any other medication for a while. So I’m just tying to stay well eating (fairly) healthily and exercising a bit here and there. Daffy
Hi Daffy Yeah put me on it a few years ago i think that’s the one that gave me chronic runs.I then they gave me Opicapone and that was a game changer and turned my life around.
Neurologist did mention opicapone last year but said I had to try entacapone first as it was cheaper!
I had a phone appointment with Parkinson’s nurse a month ago and explained what had happened. She said it seemed like I was doing ok and to carry on with my self increased sinemet. (I take it every 3 instead of every 4 hours now) Never mentioned opicapone. I suppose it’s only the neurologist that could put me on that.
Hi Daffy Yes it is only the neurlogist who can put you on opicapone but it does its job very well. How many sinemet are you on a day and what times do you take them.I’m on 7sinemet + and 2 1/2 sinemet at midnight. I wake up usually twice between 12 am and 6.30 am and have to take sinemet each time because i can’t get back in to bed and cant sleep without it. Iusually get a maximum of 2 hours from the time i take one to when it wears off and then i’m virtually frozen until my ,ext one kicks in.
I take 2 sinemet at 7 am, 10am, 1pm, 4pm, 7pm, and then a slow release at bedtime. Most of the time that works fairly ok but I do get wearing off. Usually takes a while for a fresh dose to kick in, especially if I’m tired or stressed.
And of course as you know every day is variable and what works one day may not the next.
Sleep is variable. Sometimes I sleep well. Then it takes an age to get going in the morning. Other times I seem to spend most of the night awake. Sometimes I get up and make tea and toast, especially if i’m stiff. It seems to ease things up a bit so I can go back too sleep.
On sleepless nights I listen to the radio a lot - passes the time
Hi Daffy…sorry it took so long
Hi Daffy… Sorry it took so long to reply, my main laptop has decided to play up so that’s gone to be looked at and now i’m on my tablet. Your regime is much the same as mine. I havge 2x 1/2 sinemet @ 12am then 1x [email protected] 3.30. 7.30. 10am. 12am. 2am 5.30 pm. and 9 pm. The days are usually very good from 10am on and a good day would let me go all the way from 10.30 to 8pm without a problem. Then comes 8pm. If i’m lucky my restless legs will not kick in but invariably they do and they can be just one leg or both barrels in both legs. The 9pm meds often don’t work at all and sinemet is the only thing that kills RLS. Almost always within 30 minuits.But then i only sleep for 2 hours or so at a time and wake up with hardly any movement xo nights are a bit of a nightmare bug hey ho life goes on and i have great family support and if aint killing me. sorry to drond on but it’s nice to talk to people who understand.
Feel free to have a bit of a moan on here, we’re all in the same boat and understand.
I seem to go off before and for a bit after each med dose but otherwise manage ok. On a really good day I could almost kid myself didn’t have pd - till meds wear off. As you said, there’s worse problems to have.
At the moment I’m sleeping ok. Could be just a passing phase but I’m enjoying it while it lasts.
My family are very supportive too, that makes such a difference. But I know they find it hard to understand how I can be ok one hour and not so good the next. On the plus side, I’ve realised I don’t get so many bug bites since PD - maybe I taste different. Mosquitoes target my poor husband much more than me these days
Hi Daffy, Despite being diagnosed 7 yrs ago I have only just had the courage to come onto this site. As I’ve scrolled down, I’ve thought ,'Thats me! That’s me! I used to take my meds 4 hourly but now ,like you 3 hourly. It has now occurred to me that whilst we are all different,we are also very much alike. Having said that our trial and error with all the different drugs all seems to be a bit hit and miss. I am now compiling a list to discuss with my consultant at my next appointment! Last time I had a telephone appointment so I emailed him in advance listing the things I wanted to discuss. This worked really well because he had time to think about my way forward before my appointment.He said he was happy for me to contact him if I had any problems which is great because I have always had difficulty in contacting the specialist nurses. Anyone been asked to try the Apomorphine pump? I have loads to share but will save it for another time!
It’s nice to meet you.
Yes It’s amazing how much I can relate to in a lot of what others say on the forum too. And how widely experiences differ too. I found it reassuring to discover I was not alone in all this. It doesn’t make anything better of course but it helps a bit.
I was diagnosed 4 years ago but had suspected i’d got pd 2 years earlier.
At the moment I’m only on sinemet but was wondering whether to ask about opoicone (not sure of spelling) at my next appointment. Do you know anything about that? Daffy
I’ve just had a phone appointment with my neurologist who is kindness itself but I have a job hearing him and sometimes understanding his accent.
Your idea of emailing your questions etc ahead is a great idea.
I was diagnosed 2 years ago but my Sinemet is wearing off in less than 3 hrs. I tried Neupro patches which I was able to tolerate at 1mg but then caught COVID and I seemed to suffer exaggerated side effects of all my Parkinson’s treatment.
Everything is settling down again apart from the wearing off so my neurologist has recommended Entacapone to see if that helps.
I’m also having problems with my bladder so I’m waiting to see an Urologist to see if it’s Parkinson’s related or not.
Stay well everyone