My Parkinson's disease neurologist has just prescribed rytary, the new extended release version of levodopa that the FDA approved in January. But for nearly a month now I've been very pleased with the results I've achieved by switching from the regular carbidopa-levodopa that I've used for years to the older extended release pill.
My pharmacist tells me that my insurance company hasn't approved rytary yet and that it cost $900. I'm sure I'll get the approval but will the new pill prove to be that much better than what I'm taking now?
Note: I'm providing these links, not in an attempt to generate traffic for my blog, but rather because my age (86) and my Parkinson's prompt me to use any shortcuts I can.
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Michael -- It's not a book. I write a blog -- "Aging and Parkinson's and Me" (parkinsonsand5htp.blogspot..... BTW, I get no money from the blog so I'm not touting it for personal financial gain.
Hi! John Pepper, when I read your book a few months back, you were living in SA. Where are you now? I am a young 70, relatively healthy, and I have had DBS recently with good results after January 2015. I have good control over tremors and Dyskenesias but still spend a fair time fighting with hip pain. Am I just a "Wimp"? I definitely know I stay alive by exercise. Thank you,
David
"GjyshiDavidi, which is the name I received while in Albania for six years doing orphanage and humanitarian work. I laid claim to having 200+ grandkids.
Stay with what works. I tried it and it didn't work for me. Now I have to take more sinemet because that wouldn't work like it did before the rytary. Just an. idea. I know someone else switched to the cr and is working for them.
Thanks. I've just collected all the patient experiences I could find on this forum and a similar one (Patients Like Me) which I'll share later this week. It certainly reinforces my concern that new may not be better.
I've tried it twice...the first time the right dosage was not right and second time same story...had bad affects....went back to old way of carb/levo and is taking some time to feel half way better again...I'm like someone said if it's not broke leave it along...I know from experience !!!!! and it wasn't fun.......
Update: still waiting for final word on whether insurance will cover it but I've learned that even if it does my co-pay will be $85 or $95 contrasted with the $6.31 I;m paying for the extended release levodopa that's working pretty well. For more details, see
Hi! John Pepper, when I read your book a few months back, you were living in SA. Where are you now? I am a young 70, relatively healthy, and I have had DBS recently with good results after January 2015. I have good control over tremors and Dyskenesias but still spend a fair time fighting with hip pain. Am I just a "Wimp"? I definitely know I stay alive by exercise. Thank you,
David
"GjyshiDavidi, which is the name I received while in Albania for six years doing orphanage and humanitarian work. I laid claim to having 200+ grandkids.
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Problems using extended release types of Carbidopa Levodopa.
Slow release cardopa/levodopa 
can't eat with Rytary want to go back to sinemet - advise?
Levodopa Overmedication – Common, Unrecognized, Devastating
