Neupro Patch
 

I'm probably not representative of the typical Parkinson's patient, so I don't know how helpful this will be. I'm a young "old-timer" to PD. I had my first symptoms 20 years ago at 30 years old, and was finally correctly diagnosed in 1990. (For the mathematically challenged, I'm now 50). I am disabled, but manage to piece together a few functional hours in a 24 hour period: 20 minutes here, an hour there. No picnic, but I am grateful for any 'up' time and any improvement.

In addition to a long list of other med's, I started the patch about 3 weeks ago at 2mg, and increased to 4mg a few days ago. So far, the effects have been less than anticipated. (But remember, I'm an "old-timer" to PD, am on the patch a relatively short time, and am on a relatively low dose. While the publicized max is 6mgs, under certain circumstances, we can go much higher). My neurologist is a MDS in NYC with a "high-shelf" reputation and recommendations.

Back to my experience with the patch. The "dyskinesias" and "off time" are actually more severe, but seem to be of shorter duration. Also, there has been no great improvement in the sleep department. On the bright side, I have noticed in just the last few days that each day is a little bit better than the day before, so maybe....

Sorry that's all I can report for now, but the Dyskinesia Monster just struck so my typing ability is almost shot! Will keep you posted in the days ahead.
Keep the faith!
Keith

8 months using the patch
 

I have been using the patches for almost 8 months and the max I can tolerate is 6mg. When tried 8mg a while ago, I got mild dyskinesia (after 1 dosage of stavelo 100) and had to tear off the patch for relief - that is one of the convenience of using patch to oral medication. WARNING: Never do that if you are on yr own or when doing something serious! say driving. on the other side of coin, it tends to peel off in humid time or when yr skin is sweaty.

My neurologist intends to switch me from stavelo to neupro completely but the patch does not offer me a stable medication benefit it promised. There may be ups and downs of dopamine supply in our brain! But the patch do prolong the effect of stavelo/ sinemet.

Brokie, I never know that the same site must not be used for a two week interval. That may be the reason for me not getting the optium result of the patches after 8 months!:mad:

Best

Ling

Hi Keith and welcome
 

Sorry.I must have missed your previous posts or I would have expressed my welcome sooner.
Diagnosed at 30? So so young. But you sound as if you stay positive and your post is so encouraging by your attitude.So sad that you have to put up with so much though and wanted to say how lovely it is, that despite your difficulties,you have offered such useful information to this thread.I am not on patches,but am in the middle of changing neurologists so should this new guy suggest these "stick on`s " I will have learned a bit about them

Ling...good to see you. I am surprised that if,as Brockie implied,that you must not use the same site within two weeks..that you weren`t told of this.And you are still on 6mg?
Is it likely to need increasing or have you found a good balance now?
Oh by the way Brockie...my friend doesn`t use the same place within 14 days...but should she be leaving this return even longer than 14 days? I got a bit lost by your reply.I meant that her rotation is every 14 days but you appeared to think this too soon.It is information I can pass on to her though and may relieve her itching,which,she says..isn`t too much of a nuisance.


It`s strange...until Therese brought this subject up I hadn`t given patches much thought.Forgive my ignorance but what exactly is the main benefit for using patches over pills?Is it a slow release thing? A consistent release thing?
Ah well....hope some more info is offered.Interesting.

steffi, my neurologist never cautions me about the two-week rotation of site, he just suggest me to trial and find the best location, which to me application of patch at thighs gives the best result. I would read the instructions and warnings carefully, and find a good balance!

LING

Steffi-
Thanks for the welcome. I've been reading this site for quite a while, but have not contributed my input until recently. I did not think that I had much to offer. I realize now that, with roughly 2 decades of dealing with PD, I have plenty of experience and accumulated knowledge that can be helpful to many.
Coincidentally, my "time line" with PD is similar to Michael J. Fox. Initial symptoms, diagnosis, going public, stopping work, all at about the same age, more or less. And, except for the fame, world-wide recognition, acting talent, book-writing and untold wealth, our liives are practically identical!!! (Just going for a laugh there! Is there an emoticon for sarcasm?)

Anyway, thanks for your kind words and I'm glad that you feel my input was useful to you and others. If you decide to go for the patch and have any questions, I'd be happy to offer my help.

In the meantime, aside from medication, I have to say the two most important "treatments" for the best prognosis is plenty of EXERCISE and ATTITUDE(read: sense of humor). It's not always easy (just try telling a joke while running!) but very important.

All the best,
Keith

Thank you
 

It's nice to have your perspective, Keith! I hear that my neureologist is putting most everyone on the patch so I'll see in Sept when I go back. I think it was just appoved in US (or just found its way to Kansas!)and people in my support group report the pharmacy having to order it for them - no one is real impressed YET, but it's only been a few days or so. Do you find it helps you sleep and that getting up is easier? That's apparantly the aim with these folks..Off topic: would you share how much and what kind exercise you do? I'm trying to increase the amount without ending up in bed with exhaustion!!! (the humor part I can deal with stretched out in bed with a funny book:) ) Thanks.

Hello all,

I posted on a previous thread abouut Neupro some time ago, but maybe its time to give an update.

I was started on the patches a year or so ago now in conjunction with Azilect (I was diagnosed about 18 months ago at 37).

I have generally found very little in the way of persistent side effects, although initially and on i ncreasing dose I felt quite nauseous and dizzy - and I have to avoid certain more sensitve areas of skin, but apart from mild irritation I'm usually OK.

However I found that I moved up the patches quite quickly -- and reached 10mg several months ago (an 8 and a 2). It was then decided that I add in requip and try to drop back to 8mg - as this was the maximum dose licensed in the UK at the time. The expereince of my neurologist has been that the patches just don't have the punch of the oral agonists for most of his patients.

So now I'm on three drugs! Great.

I have found the side effects of Requip pretty horrible in comparison - especially the drowsiness. And I now really appreciate the continous release aspect of the patches...

So now Neupro is licensed up to 16mg in the UK I'm considering my options again.

All in all a mixed picture... hope it's of some use!

Cheers,
Toob.

Here I go...
 

sorry....my friendly light hearted mood which promoted this response didn`t seem to transfer well into words so am deleting.
Sorry.

Sasha-
No improvement yet in sleep or getting up in the morning. They're both still challenging tasks.
As for exercise, I do something almost every day. There are 3 categories you need to focus on: Flexibility (range of motion, stretching exercises), strength (weight lifting exercises - doesn't have to be heavy weights. Even 3-lb. dumbbells can give you the necessary resistance), isometrics to keep muscles strong. And finally, cardiovascular work to keep the heart and lungs strong.
I'm no expert and there are tons of books on the subject. In fact, I believe if you go to www.parkinsons.org, you can order free booklets on this and many other subjects (diet, mental health, caregivers concerns, etc.)
The important thing is to do - or try to do - something every day. I motivate myself this way: I intend to be "better" some day. In order for that to happen I've got to keep what I've got (my body) in the best possible condition, so that when the "cure" or "next treatment" comes along, I'll have the best possible chance of getting the most benefit out of it.
And as great shape as I am in (aside from the PD), I'm EXHAUSTED from writing the longest run-on sentence of my life!!! I think I need a nap...or a drink or both!
Hope this helps a little, Sasha.
Keith

Correction
 

Correction: that website is www.parkinson.org (no 's' at the end of the word 'parkinson.'