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

[gleeson]

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.

[Hidden]

"cost $900" ? per month?

Neupro time release patches, cost 400$ per mo

[gleeson in reply to Hidden]

My neuro

[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]

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 in reply to JohnPepper]

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

[gleeson in reply to michaela13]

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 in reply to michaela13]

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

Good luck

John

[gleeson in reply to JohnPepper]

You just got a book order from me.

[JohnPepper in reply to gleeson]

Thanks Gleeson, you're a STAR!

John

[GjyshiDavidi in reply to JohnPepper]

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 in reply to JohnPepper]

Ok

[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 in reply to michaela13]

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]

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]

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]

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]

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]

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.