Anyone using Gocovri?: My worst symptom is... - Cure Parkinson's

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Anyone using Gocovri?

ladyaudree profile image
25 Replies

My worst symptom is the dyskenesia. When I am tremoring I can't think about anything else - like when I am looking at myself and the rest of the group in the mirror of my exercise class I see I am trying to stop it rather than doing the movement correctly. I just read about a medicine called Gocovri which is "new" and expensive and has no generic equivalent (which my health insurance prefers to prescribe). Has anyone tried it?

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ladyaudree profile image
ladyaudree
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25 Replies
Enidah profile image
Enidah

Gocovri is controlled release amantadine. I haven't tried it but I am also curious. I take regular amantadine 100 mg twice a day. I don't know how much it's helping my dyskinesia. Right now I am trying to take as little Carbidopa levodopa as possible and still be functional. I think we're always trying to find that balance.

Juliegrace profile image
Juliegrace

As Enidah wrote, Gocovri is time release amantadine. Have you tried amantadine? Most insurance companies will require that you try it and then your doctor will have to attest that it did not work in order to cover the cost of Gocovri.

ladyaudree profile image
ladyaudree in reply toJuliegrace

Is amantadine a prescription drug?

Juliegrace profile image
Juliegrace in reply toladyaudree

Yes. If you do a search on it here, lots of information will come up.

ConnieD profile image
ConnieD in reply toJuliegrace

Interesting Julie I didn’t realize your dr had to attest that amandine doesn’t work. It worked well for a couple months for me and although it might help mildly it’s not as good as it was. I wonder if the time released would be much different since it’s the same medication. The only thing that seems to help is trying to get by on a smaller amount of Sinemet.

Juliegrace profile image
Juliegrace in reply toConnieD

That is the experience of one person I know. Possibly if you have a more reasonable insurance carrier (oxymoron?) they might cover it, no questions asked. Given the cost, it’s doubtful.

JAS9 profile image
JAS9 in reply toConnieD

Amantadine is known to become less effective due to accommodation rather quickly. It can also be difficult for some people to stop taking, which is why I've avoided it. Reducing Sinemet should help with dyskinesia, but you should go slowly and work with your doctor. If he/she isn't experienced with reducing L-dopa, you might want to ask for a referral to an expert. I've recently reduced my L-dopa by about 15% over several months. It was difficult due to the return of PD symptoms, but eventually, I reached a new balance; the L-dopa medicine is working better again and my dyskinesia is gone.

Here's something that might possibly help you that's being discussed by several PwP here on HU: healthunlocked.com/parkinso...

ConnieD profile image
ConnieD in reply toJAS9

Thank you Jas9 I have been following Wriga’s posts they are very interesting!!!

Finn3 profile image
Finn3

My husband ( 71yrs, PD diagnosed 9 years ago) has been taking Gocovri for almost 6 months. He has very little dyskinesia. It was prescribed to prolong the “on- time” of carba dopa leva dopa. It has been remarkable. He has no freezing , walks at a brisk pace , there is less off - time. He has more energy, no longer apathetic. He has been very pleased with his results.

Definitely worth a try !

ladyaudree profile image
ladyaudree in reply toFinn3

Did he suffer from dyskinesia before?

Jumex2017 profile image
Jumex2017 in reply toFinn3

Are you saying that he had freezing and dyskinesia before he took the drug ? And all this improved? Was the results almost immediate?

Finn3 profile image
Finn3 in reply toJumex2017

Yes, he had freezing and shuffling especially at night and early morning. We noticed results in about 1 week. It was truly amazing . He even talks more! His dyskinesia is really very slight, so the improvement was not really noticeable.

Again, he was given this because his meds were wearing off in 2 hours, not for dyskinesia. He is also using a NUPRO patch once a day along w CL regimen. All together it’s working.

Our friends cannot believe the difference in both his energy, his walking and overall demeanor. I have to concur. He actually looks forward to doing things again. I hope it works as well for you!

John_morris71 profile image
John_morris71

It is Amantadine Extended Release.

centerwatch.com/drug-inform...

Finn3 profile image
Finn3

Yes, he had slight dyskinesia in his feet. There doesn’t seem to be any change in that.

Jumex2017 profile image
Jumex2017

I was told that amantadine is normally given at later stages of Parkinson. So i m quite surprised

ParlePark profile image
ParlePark in reply toJumex2017

I’m still stage 1. I take reg Amantadine for tremors. Helps a bit. Was prescribed by 2 neurologists for tremor.

Jumex2017 profile image
Jumex2017

My husband was recently prescribed ropinosole and after reading all the replies I got from hu, we decided he should not go for it . ( we only got 1 good review and over 10 which were extremely bad). Doctors can only tell you that much and it’s you that has to decide based on real cases.

park_bear profile image
park_bear

You say "My worst symptom is the dyskenesia" then "When I am tremoring"

Are you aware these are opposite symptoms do not both occur at the same time?

ladyaudree profile image
ladyaudree in reply topark_bear

I just read the definitions.. I think I am describing dyskinesia not tremoring (at rest). Maybe this explains why my "tremors" are worse in the mornings after I take my C/L. What should I try?

park_bear profile image
park_bear in reply toladyaudree

Immediate release C/L is often (wrongly) prescribed by default. Switch to a controlled release / extended release / timed release version. A big hit of immediate release levodopa will give anyone dyskinesia.

ConnieD profile image
ConnieD in reply topark_bear

Hi Park Bear, which dose of extended release do you find helpful? Thanks!!

park_bear profile image
park_bear in reply toConnieD

Both the 25/100 and the 50/200 have worked for me. The 50/200 lasts longer.

ConnieD profile image
ConnieD in reply topark_bear

Thank you!!😊

Juliegrace profile image
Juliegrace in reply toConnieD

I recently tried the 25/100 CR. I did not like how it made me feel. If you try it, I would be interested in your experience.

irinaby profile image
irinaby

My husband ( 75yrs, PD diagnosed 19 years ago) has been taking Gocovri for almost 2 months. He has very little dyskinesia, but long freezing time. Doctor cancelled his Azilect and Ropinerole and also replaced Amantadine with GoCovri -137 mg . 2 capsules at night time. I see no improvements so far.

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