Has anyone ever take the med ENTACACPONE?

[Grandsonlover]

I am 70 years old, had PD over 5 years. Recently, the Sinemet 25/100 only can last 3 hours. My Neuro Doctor prescribed ENTACAPONE 200mg for me. But, other doctor said that will causes my Dyskinesia worse. Besides, I don’t want to take too many med every day. Has anyone ever taken this med? How does it work? Any bad side effect?

[Thal]

I'm in my 77th year & 8th year since diagnosis and degenerating fairly progressively, I've been on madopar prescribed 3x100, 4x daily every 3 hrs.I've tried to usually take 2x100, 4x daily. I find that less is better for my over night and my mornings go a little smoother not needing meds til about 8 or 9 am. Able to prepare my minestrone breakfast with manageable tremors and feeling not too bad. I take extra doses of madopar when ever I'm involved in social situations that make me a little self conscious and nervous. I find when I do so the consequences and backlash is worsening tremors, fatigue , and awkwardness. I attribute all of this to overdosing on benserazide which if one were on sinemet or similar med would be carbidopa. It seems to me from general observation that carbidopa reaches a saturation point where it seems to over stimulate the effectiveness of levodopa. I've observed that in Europe the carbidopa ratio is available 10/100 not 25/100 . This i think is very beneficial once one reaches a total daily dose of 100 mg of carbidopa. So in my case if I take 12 doses a day I get 12x25 or 300 mg of carbidopa which I think is too much. If I were on the 10/100 ratio I would gat a total of 120 of carbidopa.

I recently was assigned a new neurologist because my previous neuro was focused on DBS and so discharged me before I could work on lowering my carbidopa. Leaving me bewildered and lost.

Thankfully my new neuro has become a welcome, refreshing and very caring doctor who has introduced me to "entacapone" which she prescribed 200 mg 3 x daily. It has worked very well for me.

Now in my third month of my trial I'm happy with it. It smooths out my day in that it makes the transition between doses less erractic. Thus reducing my off periods and made me a little more confident of the future where I hope to increase the entacapone dosage while reducing or at least keeping level my madopar and maybe reducing the carbidopa ratio to 10/100.

Entacapone other than inhibiting dopamine degradation has some other interesting properties. I recall from general reading that It inhibits ferroptosis, it's good for the kidneys, it is an inhibitor of melanoma and may have other healthy attributes for general well being and mental health.

Entacapone is available in a combination medication called "stalevo " which I look forward to cause it will make it more convenient and maybe more effective.

It can have some side effects depending on one s constitution. Such as diarrhea, constipation and mental health issues. So it's not for everyone. In my third month of trial I'm doing well and accomplishing my goal of reducing my dependance on madopar which from a layman's perspective I feel is necessary but can be detrimenal.

Hope my thoughts, options and recommendations based on my limited experience and knowledge are helpful or at least a little food for thought. And that my enthusiasm for entacapone is not premature and not just another rabbit hole. Time will tell.

[Grandsonlover in reply to Thal]

Dear Thal,

Thank you very much for your prompt reply and detailed advice. Glad to know that ENTACAPONE works well for you! Your three months experience is very helpful. The worry of off-time is a big problem for my social activities. I even cancelled dentist appointments and other doctor’s appointments due to the concerns of my med off-time. I will try ENTACAPONE, hope it will work for me too.

By the way, do you take ENTACAPONE with empty stomach or after food? My stomach is weak, usually could not stand for new med for a while.

[Thal in reply to Grandsonlover]

I'm on a low protein veggie diet so I can take with food mainly with some fruit to help it go down.

[Grandsonlover in reply to Thal]

Hi Thal,

Thank you very much for your prompt reply. OK, I will take it with food to try.

[Konadavid in reply to Thal]

Are you in Thailand?

[park_bear]

I concur that entacapone smooths out levodopa levels and will help it to last longer. It may allow you to reduce your levodopa dosage and thus reduce risk of dyskinesia.

[Grandsonlover in reply to park_bear]

Hi park-bear,

Thank you very much for the prompt reply and advice. I should try it as well.

[Smittybear7 in reply to park_bear]

Does it effect your ability to drive?

[park_bear in reply to Smittybear7]

No. Do you have any reason why it would?

[eschneid]

Grandsonlover.............I don’t take Entacopone, just wanted to say that you should give new Rx a try. Parkinson's is a very "individual" disease and if one doctor says it could increase dyskinesia, you won't know if it can help you until you give it a try.

You can always tell your doctor it makes you worse and he can adjust dosage. We all have a different variation with this disease and I've found that doctors only know what they were taught in the one size fits all PD book.

[Grandsonlover in reply to eschneid]

Hi eschneid,

Thank you for your advice! You're right, Parkinson's is "individual disease, every one somehow is difference. I should have courage to try it.

[LAJ12345]

my husband takes 1/3 tablet 3 times a day with a dose of madopar. He tried 1/2s but it made him a little worse. He’s not tried it at full dose. He doesn’t usually do well with full doses of anything so a bit nervous to increase it.

But I have been told you aren’t supposed to it cut it by others. The doctor doesn’t seem concerned about cutting it.

I’m not sure if it helps, too many variables.

[7springshollow]

I was on it but recently discontinued it. I had strange diarrhea the whole time I was on it. Like my food was only partially digested. Im not sure it ever helped extend my on time and there was no difference in that after I quit. I just switched to taking les CL but every 2 hours.

[Grandsonlover in reply to 7springshollow]

Hi 7springshollow

Thank you very much for the info. Me too, I only had it one day, but, my dystonia got worse.

[Crollo1]

yes i have taken it and it worked pretty well but it caused intestinal distress to the point where I had to stop taking it

[Grandsonlover in reply to Crollo1]

Ho Crollo,

Thank you very much for your information!

[Crollo1 in reply to Grandsonlover]

you’re welcome. Best of luck!

[Tinobambino]

I am 70 years old. Diagnosed 10 years ago. I just took this medicine for the first time last month. I took it one day only. I had every side effect written in the pamphlet provided by the pharmacist. Worst night I’ve ever had since been diagnosed. Beware the dyskinesia. was off the charts could barely stay in bed.

[Grandsonlover in reply to Tinobambino]

Hi Tinobambino,

Thank you very much for the info. Me too, I only had it one day, but, my dystonia got worse, so, I stopped it.

[gl2238]

the short answer. I was on (8) 25-250 Sinemet about 2 years ago. Now on (8) Sinemet 25-250 + (8) 200 mg Comtan. (Entacapone). And yes Dyskinesia can be brutal at times. More to come when on the desk top. I am 84.

[Gallowglass]

I took Entacapone for several months but quit . At the beginning it gave me 20 extra minutes of ON time. But over a few months dwindled to nothing. Also caused rash on my face.

[Grandsonlover in reply to Gallowglass]

Hi Gallowglass,

Got you, thank you very much!

[LagLag37]

I took it for a short time and it made my dyskinesia even worse and I started walking backwards. It was a strangest thing. There’s a guy at the gym I go to and he tried it and it worked great for him so I think it’s worth a try. I remember right it doesn’t take long to ween off of it. I did take Gocovri and it worked well but then it was expensive. I’m not sure if the cost has gone down or not. 🥊

[Grandsonlover in reply to LagLag37]

Thank you very much for the information

[DachshundFan]

I tried Entacapone. It was during the COVID pandemic, and I was acting like I was drunk. I was slurring words and fumbling with a test kit. That was it for me and Entacapone.

[Grandsonlover in reply to DachshundFan]

Thank you very much for the information

[Sandmanliz]

i didn't notice any difference. tried for 4 months.

I will say that adding mecuna to a protein shake i drink @2am when i am starving has really helped! trying to keep weight up. i can skip 2 am cl dose and feel good to @ 7am. happier too.

[Grandsonlover in reply to Sandmanliz]

Thank you for the info! I may try adding Mucuna with protein shake too.