Gocovri

[ladya2020]

Has anyone tried Gocovri for dyskenesia? I have been taking generic syrup for Amantadine and want to try continuous release Gocovri.

[Juliegrace]

If you use the search function you will find several posts on it.

[jeffmayer]

Is it prescription only

[ladya2020 in reply to jeffmayer]

Yes it is and very expensive. I am trying to get approved fr a 4 week free trial from the manufacturer. Check their website gocovri.com/getting-gocovri...

[jeffmayer in reply to jeffmayer]

Thanks

[Intrepid200]

I have been taking it since January 2021 and it is a God send medicine .I hardly encounter any Off time, my family have sometimes forgotten that I have Parkinson's Disease. First dosage one capsule at bedtime for 7 days then 2 capsules at bedtime Am loving it only watch out as it induce hallucinations

[ladya2020 in reply to Intrepid200]

Why was the dose increased?

[Intrepid200 in reply to ladya2020]

like most PD meds started out small and then up the dosage. Truth is I have been taking one daily at bedtime sometimes I take the full dose sometimes too much cause Hallicunation so minimize that I have been taking one capsule nightly

[jocelyng]

I was on Gocovri for 3 or 4 months. Everything was great until I got slammed with three side effects. Had to discontinue it. You might be fine if you’ve been on Amantadine (which I had not). It was very effective as far as my tremors go.

[Elisakh]

I was prescribed Gocovri for dyskinesia and it definitely helped me. I’ve been on it 2 years with no side effects. I am not totally without . I still have leg bouncing and writhing usually in the evening now. I think it worked better early on. It may be losing its effect. Once about 8 months ago, the day after I forgot to take it (I take it before bed) I was very shakey. It is very expensive though. With good insurance I still pay $42. a month. And you have to get it from a specialty pharmacy who will call you every month before delivery. At least that’s my experience.😀

[ladya2020 in reply to Elisakh]

Thanks for the reply.

[sharoncrayn in reply to ladya2020]

Gocovri is not covered in US by Medicaid/Medicare Advantage. (private insurance depends). limited distribution. Retail about $2,900-$3,122 USD for 60 caps of the 137 mg dose. NO generic.

Annual cost = $36,000-$37,000.

free 4 week trial.

Not to be confused with Osmolex ER (a combination drug of IR and ER amantadine).

Clinical trials of Gocovri used "placebo" comparisons. Osmolex ER has no CTs at this time.

sharon

[ladya2020 in reply to sharoncrayn]

Trying to get the 4 week trial and then i will try for one of their other financial aid programs.

[laglag]

I've been taking it since Jan 2020. It does help control dyskensia. Mine is not gone but it's better. I was on Amantadine for several years before I started Gocovri. As others say, it is expensive. Around $3k/month. I get it from Walgreens Alliance. They told me it would be around $3k/mth and I told them I couldn't afford it and then they brought down to $200/mth and I said that was still too much, Then they asked how much I could afford and I said $20/mth so they said ok there is a special program for people under 65 they could put me under. So I'll probably have to switch to something else in 1 1/2 years. I've had a little bit of a balance problem since I've been on it and I have vivid dreams and talk or yell out loud once in awhile. I assume it's the drug? I do sleep better. I take the 2 pills at bedtime. It takes about 8 hrs. to feel it's effect, that's the reason you take it at bedtime.

[ladya2020 in reply to laglag]

I'm still waiting for the approval and prescription from my neuro. My dyskinesia is worse in the morning when i first get up so I hope it works for me.

[laglag in reply to ladya2020]

I hope it helps too! Keep us updated.

[laglag in reply to ladya2020]

Ladya2020:

Has the Gocovri been working for you?

[ladya2020 in reply to laglag]

I never got approved for it.

[billybobAK]

I started with amantadine, to no effect. so I quite then November 2019 started Macuna to try and get rid of my dyskenesia. Still it only lowered the intensity a little bit. WHEN ON 100LD/25CD I had something akin to grand or petty mal type shaking, jerking etc. For the last 9 months I've been on Gocovri for my diphasic dyskenesia 1 67.5mg pill twice a day. The dyskenesia is bareable now but can still last 15-30 min. in the morning and 30-90 min. in the evening. The best life saving trick for my dyskenesia, is to lie face down on my bed with my ankles hanging off of the edge. Sometimes I cross my legs at the ankles until the jerking stops.

[ladya2020 in reply to billybobAK]

That has got to be tough. Hope you find something that works better for you.

[laglag in reply to billybobAK]

I used to do the same thing. Lay on the bed on my stomach and leave my feet hanging off the side. It usually helped.🙃