Neupro - 1st day on...working I think... - Cure Parkinson's

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Neupro - 1st day on...working I think...

MissRita profile image
MissRita

So this is interesting. I didn’t take my Sinemet this morning and thank God I didn’t because the constipation I’ve had from it has been so awful and actually gave me an impacted bowel so I did the next best thing and took a lovely suppository and that worked incredible magic needless to say. Sorry for the TMI but if I can share it with any group of people I think you are the group to share it with LOL ❤️🙏🏼

I then went to the pharmacy this morning and picked up my patches and after I figured how to put them on I’ve been sitting here waiting for it to take hold or affect and as I surmised my legs are still shaking and are wobbly and my feet are shaking as if I drank 10 cups of coffee. I’ve had no nausea I’ve had no other side effects but I feel an odd sense of calm but not a state of relaxation.

Any feedback from anyone would be greatly appreciated. As an FYI the patch has been on my arm for the last 45 minutes. I might need to go to 4 mg or six but I have the feeling that the shaking is not going to subside and will probably get worse.

The Amantadine did the same thing but I’m not sure if that’s an agonist or not is it?

26 Replies

OK so about one hour in and I’m feeling a little bit lightheaded but not dizzy and somewhat relaxed but again I can’t really relax my feet or my hands if I sit and I need to get up and walk but I’m not as hyper as I was when I was taking the amantadine. Interesting side effects. A little bit on the stiff side still and as I stand for just a moment my legs start to get wobbly but not nearly as they were before.

MissRita profile image
MissRita in reply to MissRita

It is now almost 215 and let the hyperness begin. Hands are still shaky and actually I feel like I’m in a proverbial off state. Isn’t this drug supposed to be for extension through and on period I guess?

2mg is a very low dose of it and it'll take a few days for your body to get used to it. Give it a week and contact your doctor if its not meeting your needs

Great thx.

Amantadine is not a dopamine agonist.

MissRita profile image
MissRita in reply to park_bear

Thx!

johntPM profile image
johntPM in reply to park_bear

At least in the UK, this is not the case:

"Amantadine is a weak dopamine agonist with modest antiparkinsonian effects."

bnf.nice.org.uk/drug/amanta...

MissRita profile image
MissRita in reply to johntPM

Interesting!

park_bear profile image
park_bear in reply to johntPM

Okay then. I stand corrected.

MissRita profile image
MissRita in reply to johntPM

Worked for my ADHD though! Lol

Update!

After shaking too much I took 1 tab of 25/100 and wow what a difference. I sort of feel high in a good way. I feel more balanced.

Sadly and reflectively, as I try different meds and I do feel better I wondered to myself if that is how I used to feel when I didn’t have such a huge loss of dopamine. Then again, I don’t think I would ever know the difference what I?

Side bar!

No need to gamble or impulsivity at all. On the contrary, I’m not even hungry, and I’ll take it BC for a while I could not get enough food even though I just lost 16 pounds in 3 months...I ate and ate and ATE! Good times...

When you are taking a number of different anti-Parkinson's drugs it's often difficult to see the wood for the trees. One way around this is to use the concept of "levodopa equivalent dose" (LED). There are tables that report for each drug its equivalent levodopa/carbidopa dose. So, for instance, roughly speaking, 2 mg of Neupro patch is worth 60 mg L/C.

But that's not all, some drugs work quickly, some more slowly. Some are short lasting, some long lasting. Some deliver the active dose in one batch, some are continuous release. By these criteria the Neupro patch is almost the opposite of L/C.

I've written an app which takes these effects into account and draws a graph showing how your LED levels change with time:

parkinsonsmeasurement.org/t...

Jana86 profile image
Jana86 in reply to johntPM

Thank you! I have been trying to explain to my husband what a day feels like...a roller coaster of feeling fine and not fine. I just completed the graph in your app and showed it to him and lights on! "So when I tried to make you come for a hike at 2:30 PM yesterday at the bottom of that cycle, this is why you were so grumpy? If I had asked you at 1PM you would have said yes?" You may have just saved my marriage :-) Is there a way to print out the graph?

johntPM profile image
johntPM in reply to Jana86

I'm glad it's been of use.

Using Windows Chrome:

- the whole web page can be printed out using the Print utility ( to get there click the vertical line of three dots on the upper right hand corner of the browser window).

- to just print out the graph scroll the page until the graph is showing, press the PrtSc button. This will save the view to the clip board. Open up a suitable app, such as Paint, and paste the clip board there.

MissRita profile image
MissRita in reply to johntPM

Awesome thanks.

Cropseyville profile image
Cropseyville in reply to johntPM

My husband puts 8 mg Neupro patch at 9:00 every night. He has great difficulty sleeping, staying asleep. What is the best time to put the patch on? This has been going on for several years. Could it be the patch timing?

Interesting. I take 2 mg and I really don’t know when the best time is. But I find is no matter what time I put it on I cannot lay down to even watch TV or sit in a chair because I literally pass right out LOL

For me my body is pretty sensitive to any kind of medication because I historically don’t take a lot of meds for anything so my body is pretty sensitive and reacts quickly to any medication no matter the amount.

Yesterday I put it on at 1 PM and today I put it on at 1:30 and what I did notice is as the time runs out in between patches I get super tired before I put a new one on. Are you typically don’t have any problems with sleep so last night I passed right out no problem.

Thank you

Joynb profile image
Joynb in reply to johntPM

I use the graph to plan my medication schedule and to explain it to my neurologist. Very very helpful, thank you for your work,

jeanette2372 profile image
jeanette2372 in reply to johntPM

Thank you for the graph. You've put so much work into that! I am very grateful. 🙂

What brand? Thanks

My husband was put on 4mg to start with. It was increased over time to 8mg with no obvious side effects. It certainly helped his extreme apathy, but took a few weeks. Be patient. Good luck.

Gwendoline

Amantadine was originally an antiviral drug but discovered that there were benefits for the treatment of dyskinesia... it is not to my knowledge an agonist

Anyone know if Neupro actually works? If so how would I know? I put my patch on today and I got a little loopy, and began to tremor took a 25/100 and felt stoned lol happens quite a bit. Not so much a THC high but more of a Valium stoned.

Thoughts?

I didn't have those effects, but developed a terrible rash and had to stop using them.

MissRita profile image
MissRita in reply to Hupd

I get a little itchy with mine and then the next day I just move it to another part of my body.

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