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wilsons66604

Going from Mirapex to Neupro Patch

20 posts in this topic

I had my 2nd visit with my MDS last week. He adjusted the time of day I take my Sinemet as well as decreased my Mirapex (from 3 to 2).

Well that helped for a few days then I began having increased pain and stiffness...I believe because of the decreased Mirapex.

MDS is now having me try the Neupro Patch 2mg, 4mg,.....

I have seen where a few people had issues with skin or nausea problems so they stopped using it.

Does anyone currently use the patch? Does it work for you?

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I have been on the patch for about a year.  Started very slowly, and only recently went to the 4 mg dose.  I think it has helped smooth out my on times.  It certainly helped me to sleep better--I routinely get a good 6 hours of sleep a night.  I have mild nausea, which I manage with omeprazole twice a day.  The itching is a nuisance, but not severe enough to stop the treatment.  All in all, I am happy with Neupro.  Hope this helps.

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I've been on Neupro since the day of dx. Started at 2 mg for the first 2 weeks, then went to 4 mg. That first night I put it on at 11; when I got up at 6 AM, I barely made it to the back door for the dogs without passing out. Felt like I was dying: couldn't see, extremely nauseous, dizzy, cold sweats, almost hyperventilating. Somehow, I managed to eventually regain my composure enough to feed the dogs, get dressed, & drag myself into work.

The nausea continued strongly the first month. I lost 10 lbs, but I've unfortunately managed to find it again recently, probably thanks to mj. Also since day 1, I can't brush my teeth without gagging, although it's not nearly as bad as in the beginning. My stomach is weaker than it ever was, but that is only minor. 

All in all, I love my Neupro patch; I hope I never have to give it up! Two weeks into treatment, a close friend/coworker told me she wished she had taken video of me because the difference in my walk was unbelievable. 

Many people on here knock the agonists, but for me, it was like a lifeline when I was drowning in the agony of PD. 

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Thanks for the replies.

This patch sounds promising because my day has been a roller coaster of ON/OFF since diagnosed. If I get 4 hrs of sleep a night, I'm lucky.

I think ...hope...I can handle the initial side effects.  

I would be starting the patch this morning if my pharmacy had them in stock. Instead I will have to wait till tomorrow morning to start 1 2mg patch for a week. Increasing to 3 patches..."Instructions: Apply 1 patch to top of skin as directed daily. apply 1 patch every morning x7d, apply 2 patches on wk 2, apply 3 patches on wk3, then call"

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4 hours ago, secret squirrel said:

... Somehow, I managed to eventually regain my composure enough to feed the dogs, get dressed, & drag myself into work.

I was just thinking this morning about how hard it is to feed the dog when I get out of bed. Setting the dog bowl on the floor is a major task.

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5 hours ago, wilsons66604 said:

Thanks for the replies.

This patch sounds promising because my day has been a roller coaster of ON/OFF since diagnosed. If I get 4 hrs of sleep a night, I'm lucky.

I think ...hope...I can handle the initial side effects.  

I would be starting the patch this morning if my pharmacy had them in stock. Instead I will have to wait till tomorrow morning to start 1 2mg patch for a week. Increasing to 3 patches..."Instructions: Apply 1 patch to top of skin as directed daily. apply 1 patch every morning x7d, apply 2 patches on wk 2, apply 3 patches on wk3, then call"

I hope the next Rx will be for 6 mg because this drug is costly. There are manufacturer programs that help, but if you don't qualify, it's difficult to afford.

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12 hours ago, secret squirrel said:

I've been on Neupro since the day of dx. Started at 2 mg for the first 2 weeks, then went to 4 mg. That first night I put it on at 11; when I got up at 6 AM, I barely made it to the back door for the dogs without passing out. Felt like I was dying: couldn't see, extremely nauseous, dizzy, cold sweats, almost hyperventilating. Somehow, I managed to eventually regain my composure enough to feed the dogs, get dressed, & drag myself into work.

The nausea continued strongly the first month. I lost 10 lbs, but I've unfortunately managed to find it again recently, probably thanks to mj. Also since day 1, I can't brush my teeth without gagging, although it's not nearly as bad as in the beginning. My stomach is weaker than it ever was, but that is only minor. 

All in all, I love my Neupro patch; I hope I never have to give it up! Two weeks into treatment, a close friend/coworker told me she wished she had taken video of me because the difference in my walk was unbelievable. 

Many people on here knock the agonists, but for me, it was like a lifeline when I was drowning in the agony of PD. 

I am pleasantly surprised with how it's working for you.  After reading what you had to go through with this patch I thought you were just giving a warning to stay away but instead it started to do it's thing.   It really makes me wonder how long people should stick with a medication until you finally realize you are beating a dead horse or if you just have to hang in there.

 

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3 hours ago, secret squirrel said:

I hope the next Rx will be for 6 mg because this drug is costly. There are manufacturer programs that help, but if you don't qualify, it's difficult to afford.

My current insurance did me pretty good

$30 for 60 2mg patches. I wonder if I will stay at 6mg or move up to 8mg

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2 minutes ago, wilsons66604 said:

My current insurance did me pretty good

$30 for 60 2mg patches. I wonder if I will stay at 6mg or move up to 8mg

That's VERY good! With my previous insurance, copay was $100 for 30 since it was a tier-3. I was getting it for $10 through the manufacturer assistance program. With my current insurance, it's not covered at all, so I'm seeking assistance through a different manufacturer program. Not sure what I'll do if that doesn't work. 

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7 hours ago, miracleseeker said:

I am pleasantly surprised with how it's working for you.  After reading what you had to go through with this patch I thought you were just giving a warning to stay away but instead it started to do it's thing.   It really makes me wonder how long people should stick with a medication until you finally realize you are beating a dead horse or if you just have to hang in there.

 

Yes, people often don't give things (not just meds) enough time. I just kept telling myself to suck it up, that it was going to help me, that my body needed it. That was July 2015.

I should add that I started pramipexole within a week and titrated up to 1 mg. If I was a little late on the pramipexole, I didn't really notice; but the first time I forgot a patch, boy was it obvious! A year later, I was weaning off pramipexole and had added amantadine, selegiline, and rytary. I can still tell if I'm not timely with the patch.

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Well today is the day to start! I'm sitting here ...wide awake at 3am .... just waiting for first 5am patch. 

I really had not given agnostics much credit. My first neurologist just prescribed a list of drugs to me (1 year ago). I had no idea what they were supposed to do or how they worked together. 

Well, when my MDS reduced my mirapex, I really noticed the difference. ... no sleep and severe pain and just felt like crap. 

We added 2mg of mirapex at bedtime and wow! I noticed big improvement.  That's when doc decided to put me on neupro patch.  

Its really comforting to know my doc is well versed in all options AND knows when to use them  

 

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DAY 1 on the patch

I am impressed!
I felt great yesterday. I got off my ass and did some strenuous yard work in the morning.
Without realizing that it was time for my after lunch nap, I decided to go shopping the many aisles of Walmart.  Whaaaat ??? In the past, napping was the only option!
Later in the day, I prepared a dinner of tacos with a side of CCQ. It was exhausting (and tasty) but I did it!

Boy was I ready for bed when the time came. I only got 4 hrs of sleep but they were quality hours. 

I think this patch may be "just what the doctor ordered".

...and to think, the past few weeks I had been considering life without driving. I think I will put those thoughts away. 

Edited by wilsons66604
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Good for you!  I am very impressed.   If you were good with 2mg Mirapex at bedtime then why did your doctor put you on the patch?  Are you on both now?

Do you use the patch just once a day?  I always wonder how you put that on your body and what if it falls off. 

 

 

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20 minutes ago, miracleseeker said:

Good for you!  I am very impressed.   If you were good with 2mg Mirapex at bedtime then why did your doctor put you on the patch?  Are you on both now?

Do you use the patch just once a day?  I always wonder how you put that on your body and what if it falls off. 

 

 

I think the 2 mirapex at bed time was an experiment to see how I would react to more agnostic.  Doc had me quite mirapex cold turkey yesterday when I started the patch. 

The patch is a 24hr patch. It needs to be stuck to a body part with no hair so I've had to shave several areas (upper arm, thighs, belly...)

yesterday's patch started coming off late in day so I was more careful about location & pressing it on for a longer time  to give it time to adhere. 

Edited by wilsons66604

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The patch and Mirapex are both agonists so why did he take you off Mirapex just to put you on another agonist?

Cold turkey huh?  My mom tried that twice before and she was good for about 2 days and then the withdrawals hit so I had to put her back on.  Did you get sleepy with Mirapex?  Maybe I'll ask about the patch on her next visit with her doctor.  

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29 minutes ago, miracleseeker said:

The patch and Mirapex are both agonists so why did he take you off Mirapex just to put you on another agonist?

Cold turkey huh?  My mom tried that twice before and she was good for about 2 days and then the withdrawals hit so I had to put her back on.  Did you get sleepy with Mirapex?  Maybe I'll ask about the patch on her next visit with her doctor.  

I was having a lot of OFF/ON times. The patch should at least keep the agnostic at a stable level.
I expect to have an interesting time the next few months until we get this all adjusted. I know there will be side effects but I am hoping it is all worth it.
I still take Sinemet every 4 hours. My next question for doc is why do I use the Sinemet CR at night every 4 hours. The CR flavor doesn't seem to last any longer than regular. Can't I just do the regular all day long??

I did get very sleepy at times. I'm really not sure what drug was causing it, but beginning to suspect Mirapex

After my second visit with the excellent MDS at KU Med, I decided to fire my local Nuero. He was stuck in the '70s and prescribing stuff just because. I had no confidence in him. I am giving the new doc a long leash and am open to any treatment the experts at KU see fit for me.

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Day 2

I had a pretty good day 2 also. I wasn't nearly as active due to the NCAA basketball tournament being on TV. 

Still no nap was required and my jerky has pretty much stayed away. 

Looking forward to week 2!

 

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Day 3&4 on 4mg

since I was having good results at 2mg, we decided I could try 2 patches. 

Yesterday started out pretty shaky and hyper but calmed down in the afternoon. 

I did a little testing with the mPower app. The tapping test were done just before a regular dose of sinemet and also a couple hours after. 

I could see where there is less fluctuations with tapping counts. The patches seem to keep me at more of an even keel. 

Here is a screenshot of the results

IMG_1162.PNG

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On Wednesday, March 22, 2017 at 5:51 AM, wilsons66604 said:

Day 3&4 on 4mg

since I was having good results at 2mg, we decided I could try 2 patches. 

Yesterday started out pretty shaky and hyper but calmed down in the afternoon. 

I did a little testing with the mPower app. The tapping test were done just before a regular dose of sinemet and also a couple hours after. 

I could see where there is less fluctuations with tapping counts. The patches seem to keep me at more of an even keel. 

Here is a screenshot of the results

IMG_1162.PNG

This screen shot is pretty cool! Is this some type of app you use to track symptoms, meds, etc? 

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