Entacapone help me decide if I should add it to my C/L control release regime

[Nikosmom]

I have been taking control release50/200 C/L for the last two years with no significant issues The problem is that my neurologist thinks I am taking them too frequently. I agree with him and i n the process of changing my schedule. He advised me to add. Entacapone as a way of stretching the effectiveness of my meds.

After researching Entacapone’s side effects I am not impressed. Please tell me your experience or your reservations about this drug

If the idea is that Entacapone can’ prevent the poor absorption of my meds in the stomach when competing with proteins, I don’t see the benefits for extended release I generally don’t have an issue with meal timing I prefer to work on scheduling and perhaps finding ways of decreasing the amount. I’m taking each day.

I don’t want to get used to drug and side effects.

Please help me decide

[gaga1958]

I just started taking entacapone myself 2 weeks ago. The dr stated it slows down the breakdown of levodopa and extends "on" time. I have gained about 3 additional hours of "on" time since I started taking it. The only side effect I have gotten is orange pee. It is my understanding it could contribute dyskinesia, which is the reason i wanted to avoid adding more C/L. So not sure what the correct path should be, but this is what I did.

[Nikosmom in reply to gaga1958]

Thanks for your response. So far sounds positive for you. Have a good weekend

[LAJ12345 in reply to gaga1958]

But would the entacapone be causing the dyskinesia or is it the levodopa becoming better absorbed?

[gaga1958 in reply to LAJ12345]

The drug puts more C/L in your system so it is no really the drug

[Gcf51 in reply to LAJ12345]

My understanding is the Carbidopa can cause of dyskinesia via B6 depletion. True more Levodopa increases risk of dyskinesia , but less Carbidopa would have to be a good thing.

[park_bear]

Helpful here and no adverse effects. What is your current medication regimen?

[Nikosmom in reply to park_bear]

How long have you been taking it.?My current schedule I have realize recently ( from reading your posts )should be spaced out more

I take 50/200 C/L - ER at 6:00 AM; 8:45 AM; 11:30; 2:30 PM; 5:30 PM; 8:45 PM ; 11:45 PM. I used to set the alarm for 3:00 AM but I stopped this week.

I had this schedule for a year with 25/100 C/L but they changed the manufacture of the generic and the new did not work for me so we switched to essential ly double and kept the same schedule. I realize that was an error. But it was my first med experience. So help me.

[park_bear in reply to Nikosmom]

With this regimen I would expect stacking, which is to say over dosage, towards the end of the day. What is your experience?

[Nikosmom in reply to park_bear]

Yes I experience stocking at the end of the day. But today I tried to take two pill at and see how long it would last with well since 130. I am shaking like a leaf.

[Nikosmom in reply to park_bear]

I

I meant to say that I took two pills at 9 AM and they lasted until 1:30 PM

[Nikosmom in reply to park_bear]

This is the new regimen. My neurologist is proposing.

Med sch

[park_bear in reply to Nikosmom]

The final authority as to which is the best schedule is how your body reacts. Take notes as to what is good and not good with each schedule. Adopt the one that works the best. Then you can make tweaks if you find you are overmedicated or undermedicated at certain times.

[Nikosmom in reply to park_bear]

Thanks for your well informed input. I consider managing my PD my full time job. I am becoming more aware of subtle fluctuations

Unlike you who comes from the precise world of engineering, my background is in the social sciences and art. Precision, discipline and measurement don’t come easily to me. Approximation has always been my MO. So in spite of my ingrained reticence I am forced to learn.

[LAJ12345 in reply to Nikosmom]

My husband was taking the control release and after a good experience for about 2 weeks it started building up and completely disabled him to the point he couldn’t even get on a bed be himself. It made his throat seize up with rigidity and he felt like he was choking and felt like iron bands around his upper arms. This all went away after switching back to the IR.

[mk2002wi in reply to Nikosmom]

I also noticed a change in effectiveness of C/L when I had to change insurance companies and the new company has a different C/L generic manufacturer. Much less on time.Michelle

[Nikosmom in reply to mk2002wi]

I wasted many hours trying to locate the same generic med. I finally gave up. It is frustrating when results are unpredictable and your neurologist. does not understand you need more meds to compensate. I changed neurologist so we’re more on the same page.

[JayPwP]

Entacapone seems to impact gut microbiome.

healthunlocked.com/cure-par...

[zozo444]

I've been taking "capone" for a few months now and it's been fine. One thing I just learned from doc - if for some reason i need to take 2 c/l pills (dental visit) I shd NOT also take a 2nd capone (doc called it that).

[Nikosmom in reply to zozo444]

Thanks for your response. It helps me decide. Have a good weekend

[Gallowglass]

I took Entacapone with no side effects for 3 months. It gave me about 15 extra minutes of on time per pill and then it stopped working and I quit taking it.i was later offered opicapone but declined due to its much higher rate of bad side effects .My advice is to investigate DBS and do the testing now . DBS can be a life changer . Very little risk

[JayPwP in reply to Gallowglass]

Would you please share the additional side effects over entacapone?

DBS is extremely invasive. And the whole risk profile may unfold over the next few years. I realise it is the best option currently.

[Nikosmom in reply to Gallowglass]

Did you have any difficulties getting off Entacapone? Thanks for responding. There’s so much to consider if one is to do the proper due diligence when making decisions.

[Gallowglass]

I did not have side effects from Entacapone. It just stopped working . I also had DBS. I was worried about the invasiveness. But It has changed my life for the better Sadly many people wait too long and then don’t qualify. When you get the testing and find your surgeon you learn a lot. It took months to do the testing and schedule the surgery.

[Nikosmom in reply to Gallowglass]

Thanks for suggesting DBS I have never given it a thought.

[7springshollow]

I was in it for about 6 months and it totally messed my gut up. I'm still trying to get it straightened out. Read this article.

nature.com/articles/s41564-...

[Nikosmom in reply to 7springshollow]

I will certainly read the article. Thanks for sharing.

[Nikosmom in reply to 7springshollow]

I was too optimistic when I said I would read the article. It extremely long and scientific.

I did not understand much of it, but I did gather this quote:

” As oral iron supplementation reduces levodopa and entacapone absorption in the small intestine51,52, we hypothesize that the effect of entacapone on the microbiome could be circumvented in the future by the oral administration of iron between entacapone doses or, alternatively, by delivering iron to the colon of patients taking the drug. If administered in appropriate amounts, this proposed adjuvant therapy could help preserve microbiome homeostasis for patients taking entacapone and/or other catechol-containing drugs that might reach relevant concentrations in the large intestine.”

[LiveRideCure]

My wife diagnosed 2012 takes CDLP 1 50/200 4X and 2 25/100 4X daily. Also takes Entacapone 1 200 4X daily and recently started Pramipexole to help with diskinesia between doses. She has been on Entacapone and current CDLP regimen for at least 2 yrs. The jury is still out on the Pramipexole. All in all she does pretty well. Her diskinesia is noticeable but does not prevent her from activities. If Pramipexole does not help we are considering going to Ogenntys a competitor to Entacapone studies show works better and can be taken once per day. Also investigating the CDLP pump from Abbvie

FDA Approves AbbVie’s 24-Hour Foscarbidopa/Foslevodopa Pump for Advanced Parkinson Disease Treatment

Good luck !

[Nikosmom in reply to LiveRideCure]

Wow! You are looking at all the angles. Good for you. I will keep your post for future reference Thanks

[cjCardio53 in reply to LiveRideCure]

There is another "Pump" that is out..with apomorphine..I am going to KILL the spelling. Opagado? You can find on internet easy enough.

[cjCardio53 in reply to cjCardio53]

ONAPGO is the apomorphine pump.

[Nikosmom in reply to cjCardio53]

Thanks for your contribution. I appreciate it very much.

[Parkie1]

Apologies Nicosmom for misspelling your name in my post . Tell us how you get on with entacapone if you decide to take it. I'll start opicapone next week and see how it goes. I have the same absorption issues that you have, as well as motor fluctuations. Hoping I can get some relief

[Nikosmom in reply to Parkie1]

I told my neurologist that

I am retired but my full time job is

“managing my P. D.”

Thankfully we’re here for each other

Keep fighting!

[srieff in reply to Nikosmom]

After 3 months of taking "capone", diarrhea became a constant companion. It took a while to realize what was causing it. Finally stopped taking it and diarrhea disappeared.

[Nikosmom in reply to srieff]

Thanks for sharing. That is significant feedback. I might try it, but I will be in the lookout for those signs. That is consistent with some feedback about stomach and intestinal alterations.

[JMSL]

I tried entacapone along with IR C/L but I ended up with an acute anxiety attack, which was a new and horrible experience. So I do not take entacapone any more. But definitely not everyone has the same response and/or side effects, so be sure to keep that in mind. Best of luck to you!

[Nikosmom in reply to JMSL]

Thanks for bringing that to my attention that is definitely a significant consider

[Lambosh]

I tried entacapone and was very unwell for the four days I took it. Currently, awaiting a different medication.

[Nikosmom in reply to Lambosh]

Thanks for responding. I hope you find the right meds

[LagLag37]

I did not like Entacapone . It did very little for my symptoms and it caused me to walk backwards. I would get out of bed and try to go to the bathroom and my body would go backwards. It was a weird feeling.

[Nikosmom in reply to LagLag37]

OMG! That’s a doozy. It would freak me out if it happens to me. Thanks for sharing.

[JerryinSATX]

Hi,

I concur about Entacapone having negative side effects. My previous neurologist prescribed Entacapone for me right before leaving the country for an extended time. After taking less than the recommended dose I started having orthostatic hypotension and a racing heartbeat when walking for exercise. I was able to get an appointment with a movement disorder specialist who switched me from too many IR tablets to Rytary, which gave me 5 hours between doses and I was only taking the extended release Sinemet at night. I have now moved on to having DBS last November and recently switched to taking Crexont, which gives me 6 hours between doses and no need for extra night time medication.

Your mileage may vary. Good luck.

[Nikosmom in reply to JerryinSATX]

I have been exploring Crexont of late but for some reason my new neurologist wants me to try Entacapone I like this neurologist and I would like to give him the benefit of the doubt. I am torn because I’ve gotten enough negative information to be very leery.

Six hours between medication would be wonderful, but even though I have to take my pills every three hours or so I am not that unhappy. Not so unhappy that I wanted the risk of destabilizing my schedule

Why are you considering DBS when your schedule seems pretty good?

I am beginning to be curious about DBS I am very concerned about having surgery. How invasive is this process and how lengthy is is the preparation protocol and subsequent adjustment and recuperation.? I am even reluctant to have a brain MRI due to claustrophobia

I had knee replacement recently It took close to three years before I felt my knee was sufficiently healed

my instincts tell me Parkinson’s and surgery are not a good combination For one thing finding pain killers compatible with Parkinson’s meds it’s not easy I feel my body takes longer to heal with Parkinson’s just like a diabetic This completely an un-scientific assessment and I am open to be proven wrong

Good luck

[mcm3m]

My wife is 79 yo and was diagnosed with PD 6 yrs ago. Over that time she has needed to increase her CD/LD significantly. She has tried entacapone (COMT inhibitor) as well as multiple dopamine agonists. In each case she would experience psychosis, primarily hallucinations of people or animals that weren't there. These symptoms would begin within a couple of weeks so she needed to discontinue. About six months ago she started taking Rytary, supplemented with Inbrija as needed. So far this seems to work best for her.

[Nikosmom in reply to mcm3m]

I fear Hallucinations very much. Thanks for writing. I have gotten very few people positive responses mostly negative and many related to psychosis. Im happy your wife found something that works for her. Have a good day.

[LagLag37]

I wouldn't be too scared of DBS. After 20 yrs of PD I had surgery in December and it was definitely worth it. There's very little pain. I headache for a couple of hrs the next day and Tylenol took care of it. As far as the MRI, they put me out because I didn't think I could lay still for a 1/2 hr. I don't have tremors anymore. Just went to my surgeon today for a check up and he was very pleased. I've had 4 programming sessions. I can smile a lot more now.

[Nikosmom in reply to LagLag37]

I am so happy for you. If I decide to have D V S. I will credit you for planting the seed. 😊