Rytary

[Ep0522]

Rytary gives me terrible dyskinesia. I’ve tried backing down to a lower dose and it doesn’t work well. So the doc gave me amantadine for the dyskinesia and it gives me insomnia. Going crazy trying to dose. My spouse is having some walking issues and I had to take him for a MRI today. Under stress right now. Any suggestions are welcomed. I at one time took carb/Levo every two hours. But my doc at the time changed me to Rytary. I’m in the same practice, but my favorite dr. Retired my second one quit, and I have now a movement specialist who gives me different strengths of Rytary and lets me work it out. Any suggestions of what I should do? Thanks

[park_bear]

If your previous regimen was working for you, I do not understand why these MDs do not let you go back to that.

[Ep0522 in reply to park_bear]

I’m convinced they just don’t understand, not really understand. My first md was older and showed concern and offered advice. The movement dr is very young and really doesn’t communicate well with me.

[PixelPaul in reply to Ep0522]

If that’s the case, sounds like it’s time to find a new doctor.

[Juliegrace]

If it was me I’d go back on c/l.

[cjCardio53]

I take both rytary and c/l. I had dyskinesias for a long time, now they "went" away. Look into the med CREXONT, Sept 24 this month..like Rytary,

[Jmellano]

I was taking 6 c/l doses per day, doc switched me to rytary and dyskinesia settled in and u i then went to 5 doses per day of rytary and always take my amantadine (in the firstddose of meds in the morning,. When do you take amantadine, a horrific tasting medicine)

[Ep0522 in reply to Jmellano]

I take my first rytary at 5 am and my amantadine at 6 am.

[BPW1]

I take rytary and when I eat protein with it for some reason I have no dyskinesia and it works great.

[RBan in reply to BPW1]

do you eat the protein right with your medicine or later on?

[BPW1 in reply to RBan]

Later on when I feel the dyskinesia coming on

[RBan in reply to BPW1]

Thanks. I’ve read about this idea before. I will try it!

[134A]

sounds like you might need a lower dose

[DianeF]

I take Gocovri, the time release version of amandatine at around 4 am when I get up to use the bathroom. I then usually sleep another 2 hours. I was advised to take it before bed, but it would wake me up after 2 hours and I couldn’t fall back asleep. Apparently it makes some people drowsy, but it has the opposite effect with me . Taking it at 4 AM gives it a chance to start working before I take my first dose of Rytary .when I wake up. The downside is it wears off around 9 PM and the dyskinesia starts a little bit. The other problem is I understand that some insurances will not cover Gocovri.

[johntPM]

There are a number of different types of dyskinesia associated wih Parkinson's. This post assumes that you have levodopa induced dyskinesia. This is more likely to be the case if the symptoms are at their worse between an hour and two hours after taking a dose. Recognizing this is is made difficult in Rytary because each capsule is made up of three different formulations of L/C.

When you were first given amantadine were your other anti-Parkinson's drugs reduced? This is because amantadine has an anti-Parkinson's effect. Giving amantadine in addition to other drugs will increase the total levodopa equivalent dose. This may take the regimen above the dyskinesia threshold.

[Ep0522 in reply to johntPM]

I’m sure it is levodopa induced dyskinesia. In answer to your question I was not told to reduce my other drugs, but am working on trying that now. Thanks John!!!

[mariaannap]

I have had some relief with taking acetaminophen with Rytary and also SAM-e. taken about an hour later. I have to take the lowest dose Rytary and take it moire often, Dyskinesia is a bugger. Hope this helps.

[Ep0522 in reply to mariaannap]

I believe I for sure need to reduce my Rytary. How often do you take it?

[mariaannap in reply to Ep0522]

Hi

I alternate between the rotary 23.75-95 and 36.25-145 The 95s last about 2 1/2 hrs and the 145 about 3 1/2. It is variable. I also got a prescription for Nourianz. It helps a lot with dyskinesia. It is a new drug Hope that helps

Mary

[Ep0522 in reply to mariaannap]

Mary

What amount do you take first thing in the morning?

[mariaannap in reply to Ep0522]

I do the larger dose. while still in bed. It takes about an hour. for it works. I forgot to mention, I also take Salary dopa bean, It really helps. I take 2 thought the day often with the lower dose.

[Ctime]

Others have posted this link to graph the equivalent levodopa dose in your blood over the course of the day. parkinsonsmeasurement.org/t...

I do not know how strictly accurate it is but it seems to make a lot of sense to me. You are aiming to get as smooth of a result as possible with your prescribed medications. I changed my dosing, more early, less later, to avoid getting higher and higher levels throughout the day. This has reduced dyskinesia a bit, reduced pain substantially and really reduced early afternoon anxiety.

[Ep0522]

Thanks, I’ll give it a try

[Parky1992]

If it were me I'd go back on the Levo/Carbi I've been on it now for 31 years and I am having issues with dyskinesia's but thats after 31 years! Why change something if its working. After taking C/L for 31 years little doses every hour now work for me. Yes I think you are right the docs do not understand, at least I've never met one yet! LOL! But how could they they are only human and without PD...

[Ep0522 in reply to Parky1992]

Wow! 31 years! Impressed! Thanks to the grace of the Lord using people like you to help with advice, I am on year 24. Thanks.

[Fricnfrac in reply to Parky1992]

Wow 31 years, that's amazing and very inspirational. My husband was diagnosed at 50 in 2021, so only a few years in and already tried so many P meds to try and find the right one/s. His main problem is off times with walking. Good to know after 31 years C/L still works! That's great

[jaycees]

Hi there, not sure if you have resolved your issues or will see my reply today since your post was a month ago but I just like to share my experience regarding sleep. I can see the medication issues have been well covered by the good folks of Healthunlocked in the previous replies, and I'm not on Rytary so I can't comment on that.

In 18th year since diagnosis, I'm currently on Stalevo-(carbidopa,levodopa and entacapone), Amantadine and 2 other dopamine agonists. I used to sleep very little. To make matters worse, I started getting leg cramps in the middle of the night.

Eventually my physio got me to try Magnesium. Almost immediately I found it reduces the cramps significantly and vastly improve my overall sleep quantity and quality. Aside from the cramps, I was constantly getting up for bathroom 3-4 times a night. Since starting Mg (I use Mg Citrate), my bathroom trips have been cut in half, I'm sleeping longer and deeper. I still have the occasional bad night but it is nothing like before.

It is worth a try, you may be deficient In Mg. Hopefully it helps your sleep .