Below is a message to my doc, wondering i... - Cure Parkinson's

Cure Parkinson's

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Below is a message to my doc, wondering if anyone else has been here. We've tried virtually all the med options. thinking dbs.....maybe

Jockboy17 profile image
7 Replies

Hi Doc, I gave the Rytary idea a go. To refresh, take 45 rytary at bedtime to hopefully give me a base to then add sinemet ir thru the day. It didn't go well. In fact, the rytary just made me feel awful in my head and gut so I aborted. I resumed the sinemet regiment of basically 1/2 and 3/4 doses with mixed results. Of late, my off periods seem to be worsening. The intensity of tightening in my hand and foot and brain functioning are the worst it has ever been. First time Ive ever contemplated how it's affecting my work life. Plus it seems now even a 1/2 of a 25/100 can be too much at times. I'm overall very healthy and strong, I'm concerned but not gonna overreact. What do you recommend? Best, John

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Jockboy17
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Edge999 profile image
Edge999

not been there but keeping dopamine levels as stable as possible i think will help and is helping me. My biggest help has been Trying to reduce all carbs and sugar and look into keto. It will make you naturally feel better and anything that helps is a win.

Jockboy17 profile image
Jockboy17 in reply toEdge999

thank you edge, good idea.

DogsWoode profile image
DogsWoode

Please tell us what your Neuro recommends Jockboy. Sorry you are having to go through this. So bloody difficult.

octonaut profile image
octonaut

Jockboy -- Your mention of Rytary caught my attention. The same company (Amneal) that makes Rytary has recently introduced a new time-release C/L called Crexont. My neurologists's PA gave me a large sample of Crexont a few months ago. According to the literature, Crexont activates in a part of the gut that provides maximum absorption. I'm very impressed with it . I take one 70/280 mg capsule early in morning, and should take a second one 6-8 hours later -- but honestly, I often forget the second dose at the "proper" time because I'm not noticing off-time til much later. Crexont is not covered on my pharmaceutical insurance -- so my neurology PA is pursuing patient assistance status for me with Amneal. As a backup plan, I'll see if I can get it from Canada at a less than astronomical price. Maybe your doc can acquire some samples for you. ... ( I've been watching Health Unlocked for any mention of Crexont - but haven't seen anything as yet. I guess it's too new at this point.) All the best to you.

Despe profile image
Despe in reply tooctonaut

Any side effects? Thank you!

Jockboy17 profile image
Jockboy17 in reply tooctonaut

I'm curious if that is where he goes. We've been talking about it. thank you

JerryinSATX profile image
JerryinSATX

I am sampling Crexont and find it’s better than Rytary. I used to take Rytary every 5 hours around the clock, but now take Crexont every 6 hours except at night when I take 1 Crexont at 9:30pm and sleep soundly until my 5am dose.

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