Rytary?: Any benefits of Rytary over c/l... - Cure Parkinson's

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Rytary?

Nitro53 profile image
17 Replies

Any benefits of Rytary over c/l? I’ve been having trouble with my c/l not working as fast or as long. She recommended maybe trying Rytary but from what I found on the net it’s pretty much c/l. Am I missing something?

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Nitro53 profile image
Nitro53
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17 Replies
johntPM profile image
johntPM

Rytary is made from C/L. It contains three components: immediate release beads; two types of controlled release beads. This has the effect of lasting longer than normal C/L, but you lose some control. And, it costs much more.

ParlePark profile image
ParlePark

Nope and I agree 100% with what John stated. . I’ve use Rytary for over a year. It actually works very well but like IR is greatly affected by protein intake, . It is extremely expensive!! I find a combination of IR and ER work best for me and it is affordable. ParkBear had an excellent thread on ER. (Generic is actually CR. Controlled Release )

park_bear profile image
park_bear in reply to ParlePark

Thank you for the kind words, and that discussion can be found here:

healthunlocked.com/cure-par...

tacato profile image
tacato in reply to park_bear

Park bear, thank you so much for this. I am confused by one point though. You say, “ER CD-LD", which is actually Rytary and therefore not relevant to the discussion. ” Why is Rytary not relevant to the discussion? Perhaps a better question is, what is the difference between extended release and controlled release CD-LD? Thanks in advance.

park_bear profile image
park_bear in reply to tacato

In the context of my post Rytary was not relevant because the charts I posted were of Sinemet CR and its generic equivalent carbidopa levodopa ER versus Sinemet IR and its generic equivalent carbidopa levodopa IR. Impax labs is guilty of confusing the terminology by using “ER CD-LD" to refer to Rytary.

JAS9 profile image
JAS9

I've used Rytary for 6 years. I'm mostly broke and I live in the US. But because I'm monetarily challenged, there are 2 organizations who will pay for it. PAN Foundation and Kaiser Permanente (my insurance company). I've never had to pay anything for it. Kind of amazing.

What many fail to appreciate is that Rytary spreads the dose out so that it's less jarring on the poor old brain, theoretically resulting in less damage over the years and a longer "honeymoon". 6 years and it's still working fairly well. My dose has increased a bit, and I have to take one every 3 1/2 hours instead of 4 hours when I started, but I was in pretty poor shape before I started on Rytary. For 7 years before that, I was unable to take any PD meds; they all made me very ill. I got to experience PD up close. Not fun. But Rytary's helped me to last this long, and I'm still a lot better off than before I started taking it.

PD_Partner profile image
PD_Partner in reply to JAS9

Hi JAS9, are you on Medicare yet? My partner was getting free due to income but as soon as Medicare age, they said no longer eligible due to Medicare rules on Medication, what a joke I thought! So now does Extended releases and some Not extended every 3 hours to try to be stable.

JoeKev profile image
JoeKev

My story dittos JAS9’s. Upset stomach from C/L. 4 hrs. Between doses to 31/2.

I’m on my feet all day and often long days. So I can take 5 Rytary before the whistle blows. Less effective towards the end of the day accompanied by slow speech and tightness in my toe.

I’m keeping it together with the help of Rytary.

Nuthatcher profile image
Nuthatcher

Been on Rytary for about one year It works much better than standard c/l for me. Keeps me on an even dose throughout the day. Prior to the Rytary I was on a study drug with similar results that worked even better but it isn’t on the market yet so my doctor prescribed the Rytary which he called the study drugs “great grandfather “. If you have wearing off problems you may like Rytary.

laglag profile image
laglag in reply to Nuthatcher

What's the name of the study drug? I think I may of heard of that study but I don't remember what it was called.

Nuthatcher profile image
Nuthatcher in reply to laglag

IMPAX

JAS9 profile image
JAS9 in reply to Nuthatcher

I'm curious too. And does anyone know when this "study drug" might become available?

Nuthatcher profile image
Nuthatcher in reply to JAS9

When and if it gets FDA approved. I’m going ask the doc if he’s heard anything next time I see him.

Bambin profile image
Bambin

I've been on Rytary for 3 years and have positive things to say about the drug. I like the smoothed dosage delivery and I agree with JAS9 that maybe this means my body/brain will benefit from this. The big challenge is to not neutralize its effectiveness by eating protein. Sometimes it is challenging to do this, as the dosage is delivered over a large time window. I'm trying it with amantadine now as my normal 3x or 4x daily dosage of 195MG capsules is not working as well as in the past.

JAS9 profile image
JAS9 in reply to Bambin

Avoiding the protein transport problem can be more of a challenge with Rytary, but I've learned something that has helped. Most people believe that they need more protein than they actually do. Here's a good video on the subject: youtu.be/7NW32vLq340

Now, it is true that PWP must be careful not to lose too much muscle mass so that we can better avoid or survive falls. This is also true for everyone over 65. Still, many believe they need more than they do, and there are risks in consuming too much protein (as mentioned in this video). How do you know how much protein you should take in? Follow the calculation in the video.

For example, my "ideal weight" is 145 lb, and following the video's calculation (145 * 0.4), I should get just 58 grams of protein a day. Because I have PD, I probably need 10% more, so make that 64 grams/day. Most people eating the Standard American Diet (SAD = fast food with a lot of highly processed sugars, oils, and fats) probably double that. You can calculate how much protein you're consuming by using the free and very excellent website cronometer.com/ So if you can safely reduce your protein intake, that should free up more of the transporter molecules that can get the L-dopa past the blood-brain barrier. I've seen a big difference when I do this.

Also, check out the many links to more excellent, related videos listed beneath this video (if viewed on Youtube.com).

laglag profile image
laglag in reply to JAS9

Good information. Thanks!

Cmike30296 profile image
Cmike30296 in reply to Bambin

I had same issue with Rytary. I take 2 x 195mg

5 times a day . Still have several hours of off time.

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