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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Do You Do When The Highest Level Of Timed-release Rytary Stops Working As Well?

A MyParkinsonsTeam Member asked a question 💭

Off times becoming an issue for the first time in 10 years. On the highest mg of timed-release retry 3x's per day. Solutions that have worked to ease sudden appearance of off-times/freezing/stiffness? Thanks.

January 13, 2023
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A MyParkinsonsTeam Member

@SteveRAird. Hi Steve. You can call Rytary & and they will try to get it to you cheaper or free. The only problem with amantadine is that it is an agonist. It’s a fake dopamine. So if you can get in touch with Rytary you might be able to take the medication that you need. I took amantadine when I first started having equilibrium problems, and it did nothing. Then I was put on Mirapex, which is another agonist. I changed neurologist, and the first thing he did after he had a DAT scan, done to make sure it was Parkinson’s and not some thing else was to put me on levodopa the real Dopamine. Unfortunately I couldn’t tolerate the full release regular carbidopa levodopa so I had to stop and I am now taking RYTARY2 capsules three times a day, and having no problem with the levodopa in the extended release, it’s release slowly in your body and my body can handle that. Just wanted to let you know what I have experienced if the amantadine doesn’t help much or at all. Take care and please try to call Rytary and tell them you’re checking in to see if you can get assistance with it because it’s so expensive. You’ll have to fill out financial information so they can see how much money you have coming in that will determine if you get it free or not but many have gotten that much cheaper. I am in the midst of trying. Be blessed my friend.
Carol
Scottsmom 🥸

January 20, 2023
A MyParkinsonsTeam Member

I take carbo/levo 25/100 2 pills at a time 5 times daily and 1 at bedtime. I also take carbo/levo 25/100 ER extended release- one 3 times daily. This works quite well. This extended release is zero copay with my insurance UnitedHealth from their online pharmacy Optum. Try it - may be as good as Rytary and less $$.

January 18, 2023
A MyParkinsonsTeam Member

My doctor will give me straight carbidopa levodopa pills to take if my Rytary wears off. I have heard that they have an inhaler now as well. It’ll give you a boost if you’re having problems with wearing off before the next medication dose.

January 25, 2023
A MyParkinsonsTeam Member

Do you have an MDS certified Neurologist? A Movement Disorder Specialist?

January 13, 2023
A MyParkinsonsTeam Member

Rytary is to expensive pharmaceutical companies don't need your money

May 14, 2023

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