GOCOVRI or Amandine

[Fishaholic]

Please give me your thoughts. I was taking Amandine 100mg 2 time daily . Now have me doing GOCOVRI 1 capsule at bedtime which only 137MG . Amandine made for daytime only,and GOCOVRI for nighttime?

[Juliegrace]

Are you feeling any different? Gocovri is a time-release version of amantadine. Some people have reported good results.

[Fishaholic in reply to Juliegrace]

Yes I think I’m not sleeping as well. I think with the unsettled situation of corona Virus and with a lot friends dying . I just think my Nero got me going backwards. I have to travel 3hrs to see him. I have only been taking GOCOVRI just about 2 months. And having to deal with excess Salvia.

[PDGal4]

I think you take one or the other. I'd be curious about anyone's experience with Gocovri. My doctor wants me to take for dyskinesia, but I am leery of it. High percentage from clinical trial experienced hallucinations and paranoia--about 30% total. Also drinking contraindicated, and I enjoy 2 glasses wine a night with dinner. Doc says okay to drink but leery of that too.

[sharoncrayn in reply to PDGal4]

Most of the Gocorvi CTs were run at the 274 mg dose.

Definitely more adverse reactions than the placebo control group with pooled data showing a 20% AR withdrawal/discontinuation. So, definitely a question mark drug which should be monitored carefully with your health care professional.

Sharon

[PDGal4 in reply to sharoncrayn]

Thanks for your response, Sharon. I appreciate your expertise. He did prescribe the full dose-- start with 1 x 137 MG capsule at night and then after 2 weeks increase to 2 x 137 MG or 274 MG.

What I don't understand is I have friends with worse dyskinesias and much higher Rytary dosages than I take who were prescribed the same dosage. I have put off taking this drug for a year now. My dyskinesia can be annoying but it's not that bad. Mostly when I am not moving my body, like sitting at a computer to type or driving.

IF you have any other info or links with information, I'd much appreciate.

[sharoncrayn in reply to PDGal4]

Both drugs are extended release. I would avoid a high fat meal/high protein meal when taking your dose because it will probably delay absorption.

Check with your neuro about your Gocorvi dose if you are over 65. With Amandine the normal dose (200 mgs) is usually cut in half if over 65. It may apply to Gocorvi as well.

Hope your insurance covers these drugs.

[PDGal4 in reply to sharoncrayn]

Thank you, Sharon. I am a few months shy of 66. I will definitely ask about the age and dose. Fortunately I have good insurance.

[laglag]

I've been taking GOCOVRI since January 2020 and I used to take one Amantadine twice a day for approximately 10 yrs.

Reason I started taking GOCOVRI is because my doctor thought it would help my Sinemet last longer and my off and on time would be smoother. It worked! I started out with one a day for a week and then the next week I took two a day. It was after a couple of days that I started feeling better. By the next week it seemed like I was almost back to normal. Now I feel better than I did before taking it but my off to on is pretty shaky but only for maybe a half hour rather than an hour or more. My dyskensia is a great deal better. I have a little if I have a lot of anxiety.

I have a few more side effects though. My blood pressure is a little lower at times so my balance is not as good and I have to visit the bathroom a little faster. My mouth is drier than before but that's usually in the night so I don't notice it as much. I sleep better but I talk more at night, nothing violent. Even with those side effects, I still think the advantages outweigh the negatives. Because of the covid-19 I haven't seen my neurologist since January, so I'm anxious to see her and get her opinion.

I think the reason you are supposed to take it at night because it takes around 8 hrs to reach it's peak and then it slowly starts releasing less.

It's very expensive but they gave me a reduction in price because I'm under 65.

Hopefully this will answer some of your questions, if not I'll try and answer any you might have.

Debbie

[PDGal4 in reply to laglag]

Thank you for your response. Do you mind if I ask what medication you take? I am on Rytary (2 x 95 mg four times a day), Azilect, and 4 mg Neupro patch. I supplement between Rytary doses with approx 1/2 C/L 3-4 times a day. Diagnosed April 2012.

[laglag in reply to PDGal4]

I was diagnosed in 2003 at the age of 46. I take 1.5 Sinemet 25/100 5 times a day, 0.5 mg Azilect 2 times a day, 2 137 mg Gocovri at bedtime and 20 mg of Lexapro once a day. My Dr has talked to me about changing to Rytary but I hate changing when things aren't real bad. You must do ok with it?

[pinoka11 in reply to laglag]

17 years since diagnosis? I am 3 years underway and take 2 Madopar 100/25 daily... what are your main symptoms now and how did they evolve?

[laglag in reply to pinoka11]

Yes, it was 17 yrs last July

o 2003 diagnosed - thought I had carpel tunnel. Once I was diagnosed I realized I probably had it back in 1995. I started running a mini marathon each year & I kept getting slower & my husband would tell me my foot looked funny, my foot was dragging when I ran.

o Oct 2003 My husband decided to leave me & I believe the stress from that brought it out. I was diagnosed & Dr put me on Requip.

o 2004 I had a little more fatigue & a little tremor. I had trouble typing on the computer at work so Dr put me on Azilect.

o 2005 I met someone & we got married in 2014.

o Jan. 2007 I found Rock Steady Boxing. It was & still is a Godsend.

o Dec 2008 had breast cancer. That put me back a little. I also had to go off Requip & went on C/L. It really helped when I went back to work.

o. 2014 - I was having cognitive issues so I retired

o. 2017 I was really stressed/anxiety due to my mother passed away in 2009 & my brother moved to California 20 yrs ago and my dad started having health issues so I was his caregiver. He eventually couldn't drive & I moved him to Assisted living. Had to move him twice and the stress was getting to me & my neurologist had a baby so a different neuro told me to double my dosage and I was only on 4 per day and none during the night. So I doubled up & then I started taking it doubled at night. I was so busy with my dad I was taking 15 - 18/day!

o. Fall of 2018 I basically said I can't do this anymore. I was having a lot of dyskensia, a lot. I went upstairs to my"safe place" and basically didn't come out until April of 2019, 6 months. Two of my friends & my working husband had to help me by rubbing my legs and my arms because they would shake from tremors and then from dyskensia. I finally made it back to Rock Steady and back to church and now feel much better. That's when I started taking Amantadine & now an advanced formula called Gocovri. I'm down to 7 C/L's. Still driving & going to the gym and cooking. So the moral of the story is Don't over do it with your meds.

Keep fighting! 🥊🥊

[pinoka11 in reply to laglag]

Wow! Respect for you!!