Rytary switching, tips from your success? - Cure Parkinson's

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Rytary switching, tips from your success?

rebtar profile image
12 Replies

My MDS has recommended switching to Rytary. She says "most" people do better on Rytary. I have been taking one 25/100 immediate release and one 25/100 Continuous release generic C/L at 8, 12, 3:30-4ish and 7:30ish. I also have added citicoline. I get wearing off at about the 3-3.5 hour mark, and I do have pretty severe food interference so as the day goes on it works less well. even if I space it "correctly" from food.

She wants me to start Rytary at three 145's at 8am, 2 and 8pm. She says I can take an immediate release if I wake up earlier in the am. I asked her to also prescribe 95's so that I can adjust more easily and quickly, as needed.

I understand the precaution of not taking sooner than every 5 hours to avoid stacking, and that it's not a good idea to combine regular C/L with Rytary. I decided against entacapone because I already take a few meds that are mildly anticholinergic and I don't want to add to that list.

I'd like to hear from those who have successfully switched to Rytary, what to expect from the transition? Any tips? I know it's different for each person, but it seems people post when they're having problems, not when it's been successful. I'm eight years from diagnosis.

Any suggestions appreciated.

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rebtar
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12 Replies
mitel profile image
mitel

My Doc said it takes double the dose of Ratary to equal regular sinamet been on Ratary for a few years now it works well . I take 3, 195mg in the morning a 1, 195 3 more times a day and 1, 50 mg Ongentys at night time work well for me.

Sydney75 profile image
Sydney75 in reply to mitel

When my HWP switched he followed MDs protocol and was told to watch for dsykensia then dose too high. ChNged it up a little over time. Has been better than traditional C/L for him.

jackedmonston profile image
jackedmonston in reply to Sydney75

I’ve been on Rytary, no thanks to my Medicare Part D insurance company, Humana, which reflexively says that the more expensive meds require “prior approvall”, a process they don’t make easy. I had to go back on C/L: ER for two weeks to prove Rytary was better. They require the same approval process every year!

I went through the same process for Gocoveri and when I finally got approval, pharmacies i sent it to found that it was unavailable from the manufacturer. So I take Amantadine instead.

Now they are trying to reject my subscription for KIN Mobi, a sublingual version for “Rescue” when I am crashing into OFF time.

Rytary is Better for me than generics., more even. And I was able to cut down on total dopamine intake, so my dyskenesia is better and no longer have the debilitating attasks of dystonia.

Musicallmylife profile image
Musicallmylife in reply to jackedmonston

We just returned from my husbands new PD nurse practitioner, she is amazing and 100% knowledgeable and determined about finding comfort for this disease. My husband will wait till Aug 1st this year when supposedly a new form of leva dopa which will be time released is available Fingers crossed it comes out as planned and Medicare will pay for it.

She also said more exciting developments coming that can possibly unfold the sticky protein on the brain that depletes dopamine. This would be a game changer. This would be a miracle if it’s true. Hang in there 🙏🙏🙏

rebtar profile image
rebtar in reply to Musicallmylife

what new medication is that? Do you have a name?

Musicallmylife profile image
Musicallmylife in reply to rebtar

sorry she did not say. Just time released levodopa

rebtar profile image
rebtar in reply to Musicallmylife

I looked it up. By June 30, the FDA will give it a yay or nay. I’m not sure that means it’s available August 1st?

gaga1958 profile image
gaga1958 in reply to Musicallmylife

what is the new form in Aug called?

rebtar profile image
rebtar in reply to gaga1958

Refining the CapsuleIn terms of extended-release oral formulations, Amneal Pharmaceuticalssubmitted its levodopa/carbidopa capsule formulation to the FDA in November 2022. Known as IPX203, Amneal’s product has a unique mixture of immediate-release granules and extended-release beads to extend “on” periods of symptom control and decrease “off” periods. While the immediate-release granules contain carbidopa and levodopa, the extended-release beads only contain levodopa and are enterically coated to prevent stomach acid from affecting the beads. Amneal is scheduled to hear back from the FDA on June 30, 2023

rebtar profile image
rebtar in reply to rebtar

no commercial name yet, that I know of.

House2 profile image
House2

Been on Rytary for ~ 3 months, very happy with it. Started Nourianz yesterday, obviously too soon to offer an opinion on it.

IdaOphelia profile image
IdaOphelia

I was on Rytary for about 5 years before my DBS surgery. I had no problems. It can be very expensive so check out their ‘foundation’ for financial support.

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