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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.

Does Anyone Use Rytary?

A MyParkinsonsTeam Member asked a question 💭
Phoenix, AZ

my aunt goes to a parkinsons support group and someone suggested that she might benefit from the drug rytary. my aunt is currently on a parkinsons med but she is having problems with it at night and i guess this rytary is an extended release medicine. i do know that meds work differently with each persons parkinsons but this person said it worked so well for her she thought it might help my aunt. its very expensive. i know there is no generic but i also know sometimes generics dont work like… read more

January 31, 2019
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A MyParkinsonsTeam Member

HOLY SMOKE!!!!! That's alot of meds to try! But you are right. We have to keep trying untill we find the right one! It is amazing how many different meds there are !!
I live in Lima, Peru So America,. I believe i've got the best P.D.doctor in Peru! I took a list of 20 meds into his office and ask which ones i should try. He pointed to only one --- SAFINAMIDE, it's a generic for XADAGO. It's for ''off periods'' They don't have in peru, i checked with Costco and Walgreens in the USA. They both said there's no generic yet. The price for a month supply of XADAGO is $920!! So, needless to say, I am waiting on the generic, SAFINAMIDE. i am also checking the European pharmacies. These '''off periods'' are killing me! But like everything else with P.D., I will get use to it, If I have to!!

February 1, 2019
A MyParkinsonsTeam Member

Rytary very expensive - if you email the company they give you companies that subsidize the medication.

May 25, 2021
A MyParkinsonsTeam Member

Thanks for all the info. I just started Rytary today. My doc says it is the “ grandfather to the IMPAX study drug I was taking that worked very well for me. I was on the study drug as open label but FDA hasn’t released it yet so now I’m trying this. I have way too much off time with Sinamet

April 16, 2021
A MyParkinsonsTeam Member

Rytary has been a godsend for my guy. He had multiple weird symptoms before being diagnosed. He can live a normal life with Rytary. Insurance made him go to Carbidopa Levidopa for a month and he lost a lot of ground. But back on Rytary now although expensive it is worth it

September 28, 2020
A MyParkinsonsTeam Member

I tried Rtary and it wasn’t for me. Here are the tradeoff’s as I saw it.

Good
-The microcapsule technology really works and gives you a dose at intervals after you take the med

Bad
- I had digestive issues on the med.
- The times that the med releases a new dose is not controllable and often I would either get a dose when I didn’t need it or not get one when I did.

Conclusions
-I would have used it at night if I didn’t have the digestive issues
-I would NOT use it during the day because I constantly went between down times and times when I felt bad because I had too much meds. It might work better in very early stages of the disease.
-If she decides to try it be very cautious of the doses that the drug company suggests for the doctor to prescribe. It is much higher than regular Sinemet or Carbadopa/Levodopa even though that’s all that is in the micro capsules. In my case is was way too high of a dose and caused incontense and a lot of other problems.

This is the one medication that I wish I would have never even tried. I think a big part of the problem for me was the incorrect dosage and allergic reaction to the microcapsules.

That said, I’ve read about people having good results with it.

Hope that helps.

January 31, 2019

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