Ready to start my new prescription for ry... - Cure Parkinson's

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Ready to start my new prescription for rytary but . . .

gleeson profile image
18 Replies

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?

I discussed all of this in​ ​t​w​o posts on my blog last week --​ bit.ly/1ImvQKo and​ bit.ly/1fnKfyS

Note: I'm providing these links, not in an attempt to generate traffic for my blog, but ra​​ther because my age (86) and my Parkinson's prompt me to use any​ ​ shortcuts I can.

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gleeson
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18 Replies

"cost $900" ? per month?

Neupro time release patches, cost 400$ per mo

gleeson profile image
gleeson in reply to

My neuro

soup profile image
soup

If it ain't broke, don't fix it. Drs can't seem to stop themselves tinkering sometimes. They don't pay the bill!

You are at the centre of your treatment.

JohnPepper profile image
JohnPepper

Hi Gleeson. Are you aware that Rytary and all other levodopa medications do NOTHING TO SLOW DOWN THE PROGRESSION OF YOUR PD?

I see that you are 86 years old now but are you able to do some serious walking? If so I would highly recommend it. Speak to me about this.

Good luck

John

michaela13 profile image
michaela13 in reply toJohnPepper

John, can I order your book from Barnes and Noble? I have a gift card.

gleeson profile image
gleeson in reply tomichaela13

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.

JohnPepper profile image
JohnPepper in reply tomichaela13

Sorry Michaela. The book is only available from Amazon or from my Website - reverseparkinsons.net

Good luck

John

gleeson profile image
gleeson in reply toJohnPepper

You just got a book order from me.

JohnPepper profile image
JohnPepper in reply togleeson

Thanks Gleeson, you're a STAR!

John

GjyshiDavidi profile image
GjyshiDavidi in reply toJohnPepper

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.

michaela13 profile image
michaela13 in reply toJohnPepper

Ok

michaela13 profile image
michaela13

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.

gleeson profile image
gleeson in reply tomichaela13

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.

michaela13 profile image
michaela13

I went back and texted my former neuro to get his opinion. He said they really haven't got the dosage down yet and he would wait to take it.

mikael profile image
mikael

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.......

carolineb211 profile image
carolineb211

I tend to work on the principle 'if it ain't broke, don't fix it'. If you are happy with your current meds, why change?

gleeson profile image
gleeson

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

bit.ly/1C60HxL

GjyshiDavidi profile image
GjyshiDavidi

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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