Anyone using entacapone to supplement Sinemet?

Hello @thejupiterian and welcome to the Parkinson's discussion on Mayo Clinic Connect. I am glad that you asked this question as Entacapone is one medication that has helped me tremendously.

As you do, I take Sinemet, but once a day I also take Stalevo. Stalevo is a combination of a low dose of Sinemet plus Entacapone. As your doctor may have told you, Entacapone helps the Sinemet ingredients stay in the brain longer. It helps with off times. Here is some information from the Mayo Clinic website about Entacapone,
--Entacapone
https://www.mayoclinic.org/drugs-supplements/entacapone-oral-route/description/drg-20063621

I feel much better when I am using the Entacapone. For me, it is a great adjunct to the Sinemet.

I look forward to getting to know you better and know how you are doing with the Entacapone. Have you started taking Entacapone yet?

I was prescribed Entacapone 4 times daily to be taken with each Sinemet dose in August 2022. I filled the prescription. When I picked the medicine up & read the package caution warnings I had concerns w/taking the medicine. I did take it a few times. I started taking the Entacapone 5x/day. (I now take Sinemet more times/day.) I have been taking the Entacapone now for 2 weeks. I have not seen any improvement in my Parkinson's symptoms. Good luck.

My husband is taking both Sinemet and Entacapone 4X/day. He has been on this for about a year but they don't seem to help him very much. His gait freezing is getting worse and the doctor just told him to increase his dosage. He didn't tolerate increased dosage well. This is pretty much things in a nutshell for the past year.

Hello @rockwood,

I am sorry to hear that your husband is not getting much relief from the gait freezing. That is a frustrating problem to have.

Have you considered getting a second opinion? Patients always have the right to a second opinion if they do not feel that their needs are being met by their current medical team.

A movement disorder specialist, is a neurologist with special training in disorders like PD. I'd highly recommend that his second opinion be with this type of doctor.

Is your husband currently seeing a general neurologist or a movement disorder specialist?

I posted earlier regarding this topic. The post got me to thinking more about the entacapone. It probably has reduced my "off times" However it has increased my dyskinesis. It has increased my sleepiness & need for naps I don't recall my doctor giving me any warnings regarding the medicine. I was very hesitant to start the medicine once I receive the prescription & read the package insert. Read the pros & cons regarding the entacapone. Read the research on the medicine. It can be very difficult to wean off of.

My husband has been taking entacapone for six months now and have not seen any help with his gait freezing problem. Two weeks ago he decided to take himself off the medication after having read a report on all sorts of potential side effect down the road. We don't really know what happened...but his condition got a lot worse over night. I told him that he should not have backed out so abruptly. Reluctantly he went back to take entacapone 4 times daily with his Sinemet. But things were never the same. His gait freezing takes a lot longer for him to make the first stride. Our conclusion is that so far nothing seemed to help his gait freezing.

@hopeful33250

My apologies for responding so late. I don=E2=80=99t have time to visit =
this site daily or frequently as my life has been turned upside down =
with me being the only person who has to do everything.

My husband is seeing a neurologist who specializes in Parkinson at Mount =
Sinai. The doctor came highly recommended. I begin to suspect the nature =
of gait freezing is just a more difficult aspect of PD=E2=80=99s. As you =
might know, even DBS doesn=E2=80=99t help gait freezing.

We will consider seeing a movement specialist. Thank you for caring.

> On Apr 11, 2023, at 11:58 AM, Mayo Clinic Connect =
wrote:
>=20
>

@rockwood,

I wish you well as you seek new treatments for your husband's gait freezing. Will you post an update as you are able?

Will do. He is not due to see his doctor until end of the month. I also would like to seek a more scientific way to measure his dopamine level which is done more regularly in some other countries. I don't know why we don't ever do any scientific diagnosis to help identifying the right medication and dosage.

@rockwood,

Yes, finding a way to determine dopamine levels would be a gift to those of us dealing with PD. I wasn't aware of this being done in other countries.