Anyone using Gocovri?

[ladyaudree]

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?

[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]

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 in reply to Juliegrace]

Is amantadine a prescription drug?

[Juliegrace in reply to ladyaudree]

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

[ConnieD in reply to Juliegrace]

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 in reply to ConnieD]

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 in reply to ConnieD]

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 in reply to JAS9]

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

[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 in reply to Finn3]

Did he suffer from dyskinesia before?

[Jumex2017 in reply to Finn3]

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

[Finn3 in reply to Jumex2017]

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]

It is Amantadine Extended Release.

centerwatch.com/drug-inform...

[Finn3]

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

[Jumex2017]

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

[ParlePark in reply to Jumex2017]

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

[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]

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 in reply to park_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 in reply to ladyaudree]

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 in reply to park_bear]

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

[park_bear in reply to ConnieD]

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

[ConnieD in reply to park_bear]

Thank you!!😊

[Juliegrace in reply to ConnieD]

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]

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.