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Rytary is coming

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Parkinson's Disease
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Posted 1/8/2015 9:35 PM (GMT 0)
Hello everyone,

Since nothing much happens on this forum I thought I would wake you all up. Here's hoping this will work so much better than what is available now and make everyone with PD function better than before.

Rytary was held up by the FDA for a very long time and now has finally been approved. It will be available to the public starting next month. I have very high hopes for this drug because they are tiny beads in a capsule that.... wait for it.... can be opened and sprinkled in apple sauce for people that cannot swallow pills like my mom. This will be in competition with Stalevo and supposedly much better! We shall see.
Posted 1/12/2015 2:01 PM (GMT 0)
Bella, thanks! Below is a press release regarding Rytary:

FDA Approves RYTARY for Treatment of Parkinson’s Disease

- Jan 08 2015

The Parkinson’s Disease Foundation (PDF) alerts the community that RYTARYTM, an extended release formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of Parkinson's disease. The approval was announced today by the drug’s manufacturer, Impax Pharmaceuticals.

Among the medications available to treat Parkinson's disease, carbidopa/levodopa, often taken as Sinemet(R), remains the gold-standard for easing motor symptoms. But as Parkinson's disease advances, the drug becomes effective for shorter time periods. This often makes it necessary for people with Parkinson’s disease to take the carbidopa/levodopa four or more times a day to control symptoms.

Even then, people with PD taking the drug experience drops in their levels of levodopa, causing a worsening of motor symptoms as the drug “wears off.”

In recent years, drug manufacturers have tried to develop a formulation of carbidopa/levodopa that would release more slowly over time, and keep levodopa levels more even, thus reducing “off times” for people with Parkinson’s disease. The manufacturer of RYTARYTM states that the drug is designed to reduce off times in people with Parkinson’s disease.

“A new drug for PD is always a cause for celebration. RYTARYTM is formulated to kick in rapidly, then maintain blood levels longer than immediate-release carbidopa/levodopa,” says Kathleen M. Shannon, M.D., Chair of PDF’s Medical Policy Committee and Professor of Neurology at the PDF Research Center at Rush University Medical Center. “This makes it potentially useful for people with Parkinson’s who are having wearing off of drug benefit between doses.”

The manufacturer has announced its expectation for the drug to be available in February 2015 in four strengths. The dose of RYTARYTM must be adjusted carefully as there is not a simple 1:1 relationship between the dose of carbidopa/levodopa and that of RYTARYTM. People with Parkinson’s disease who are interested in RYTARYTM are advised to discuss with their doctors the potential risks and benefits of the drug in comparison with other PD drugs.

lizzy4451
Posted 2/23/2015 10:22 PM (GMT 0)
It's here. Or today is the day anyways. I don't now when it will actually be available to the masses. I hope to get feedback from people who will give it a try.
Posted 3/6/2015 2:48 AM (GMT 0)
Unfortunately, Rytary is very expensive costing $100 per month for starting dose (with insurance) which is a budget buster for me. That price rises along with the dosage. I guess we're stuck with Sinemet which is the same drug and more affordable. I understand drug companies are in business to make a profit, but these drugs have to be affordable too. I think healthcare should not be a for-profit business, it should be a for-patient business. It's sad when money is more important than people's health.
Posted 3/6/2015 3:29 AM (GMT 0)
When a drug is new they have to charge an arm and a leg to hopefully get back what was spent. You are right though if people can't afford it then what's the point? My mom's doctor said it's too new for her to try so we have to wait. I think it's suppose to be better than Sinemet being that it's updated so whatever kinks came about with Sinemet might be resolved in Rytary or at least it should. This really sucks.
Posted 10/31/2015 10:59 PM (GMT 0)
Has anyone tried Rytary by now? My mom's doctor gave a 30 day prescription on the lowest dose to try 3 times a day. I will start this coming weekend on my mom so I can monitor how she does.

I would appreciate any reviews of this drug from someone who has tried or is taking it now. Thank you.
Posted 11/3/2015 3:13 PM (GMT 0)
Hi Bella33,
Hope all is going well with your Mom’s trial of RYTARY. My experience with RYTARY has been mostly positive. I’m 67, was diagnosed in 2006, and was using the immediate release version of CARBO/LEVO (25/100), ENTACAPONE, ROPINIROLE, and AZILECT. At the end of last August, my doctor had me switch cold-turkey to RYTARY. We stopped the CARBO/LEVO and ENTACAPONE but kept the ROPINIROLE and AZILECT. At that time, my daily intake of Levodopa was 1000 mgs. Based on a conservative approach to the RYTARY dosing chart, my doctor started me on 1 cap of 23.75mg/95mg plus 1 cap of 36.25mg/145mg per dose; 4 doses daily at 5 am, 11 am, 5 pm, 10:30 pm, for a daily total of 960mg of RYTARY Levodopa. I later regretted not having double-checked the conversion calculation, because 960mg did in fact turn out to be way too low for a starting point! My wife and I finally figured this out after I experienced increasing stiffness and trouble with eating/sleeping. On our own, we added a fifth dose at 9:00 am. This resulted in a new total of 1200mgs of RYTARY Levodopa. More days and adjustments later and I’m pleased with the results. I’m back to the original RYTARY schedule of 4 doses per day, but am now at 1905mgs of RYTARY Levodopa. This compares favorably with the 1755mgs recommended by the RYTARY chart for converting from 1000mgs of CARBO/LEVO immediate release, plus a bit more to replace the ENTACAPONE.

Result of the conversion:
1. I’m only now starting to have a few periods of mild dyskinesia.
2. 4 doses per day of RYTARY have replaced 7 doses of CARBO/LEVEO+ENTACAPONE.
3. “on” time is fairly steady between doses; averages the 5 hours or so suggested by the product claims.
4. the anxiety I was getting at various times of the day is now almost non-existent.
5. Fewer prescriptions to fill, and a lot less pills to take with each dose.

Personal recommendations:
1. Double-check the doctors conversion calculation. I highly recommend reading “How to Dose Carbidopa and Levodopa Extended-Release Capsules (Rytary)” by Robert A. Hauser. In it he discusses using a formula for providing the conversion, and also covers the issues regarding the effect that ENTACAPONE and CARBO/LEVO ER may have in rhe calculation.
2. Start on a week-day, when help may be only a phone call away (learned this the hard way).,
Posted 11/3/2015 9:16 PM (GMT 0)
Hi Don99,

I'm so flattered that I'm your first post. :-)

I am giving my mom Rytary this coming Saturday so I can watch her over the weekend and see how she does on it. I work full time on the week days and I have a caregiver that watches her but she is clueless to what I need to see.

My mom takes Stalevo with Mirapex and will stay with the Mirapex since the problem was with Stalevo. My mom cannot swallow meds whole so I have been crushing them for the past 3 years and it's better than nothing. Sinemet was not strong enough and caused a lot of dyskinesia for her so I just waited patiently for something better to come along and now it's time to try this out.

The doctor gave the 95mg dose at 3 pills 3 times a day and work up or down from there. It is very hard to follow the conversion chart being that she takes Mirapex too but she is on 150mg Stalevo and .50 mg Mirapex 3 times a day so she's not on that much meds which is why I think the lowest dose should be ok. I wish calling her doctor would be helpful but my mom is her first patient on it so your guess is as good as hers. Very few insurance will cover this drug so a lot of doctors won't even bother with it. We are covered so I feel blessed for that and hope this is the answer we have been waiting for.

Crushing the Stalevo is making her high as a kite of hopefully Rytary will be steady since it is in beads and can be put in apple sauce. Thanks for writing to me and I hope for the best.
Posted 4/25/2019 7:29 PM (GMT 0)
Tried Rytary one more time last week. Not happening. Back to crushing Stalevo. For those of you with the patience to work through it I applaud you!
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