NeuPro: keeping track of patch locations

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MikeD
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NeuPro: keeping track of patch locations

Postby MikeD » Tue Feb 20, 2018 7:04 pm

Here's a technique I use for keeping track of where to place NeuPro patches.

The NeuPro patch seems to work more reliably in different locations for different people (assuming we're always within the shaded areas shown in the instructions for starters). Also, we're told to allow at least 14 days between repeat use of a given spot.

I took photos of my front, back, and sides, then modified them into high contrast images, seeking a balance where moles or other unique skin features show up but the background is more white than gray. The moles and unique features enable you to more accurately map the patches onto your body so, for example, if you know a particular spot on your hip didn't give you good results, you can accurately avoid that spot. Then I shaded the larger areas on the photos to match those on the NeuPro instruction sheet. Keep one copy as a master and make another copy to use.

Each day I mark the spot on the photo that corresponds to the actual patch's location on my body. I mark the date, and/or you could use sequence numbers -- any way that helps you avoid each spot for at least 14 days. Then the next day I use highlighters to color code that location's effectiveness: green, orange, red for very effective, so-so, and not effective.

I think initially I wasn't following the application instructions closely enough and I may have compromised a few of the patches. So I give each location a 2nd try. If it's not effective again, then I update my master image to reflect that info.

You can easily do two 14-day cycles on a single set of photos, so you could start this process on the 1st of each month and then the date becomes your sequence number.

Rustsmith
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Re: NeuPro: keeping track of patch locations

Postby Rustsmith » Tue Feb 20, 2018 7:46 pm

MikeD, I was on the patch for 15 months before augmentation caught up me again. I started out with a similar approach. I found that after a month or so that I had identified 14 locations where the patch 1) worked, 2) would stay attached, 3) didn't cause too much irritation, and 4) wasn't didn't cause discomfort as I would move around. The last one is what stopped me from using the suggested sites on the small of my back. The patch caused too much pulling of the skin as I would twist my waist or move around.

Once I had my sites identified, I had a simple diagram that I used that had my sequence numbered. After about 3 or 4 months, I stopped consulting the diagram because I had the sequence memorized.

The biggest catch to all of this is that when you do start to augment and first need the higher doses, this means that the patches get bigger. Sites that were great for the little 2mg patch were a bit more challenging for the big 4mg ones.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Caitrin
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Location: New Jersey

Re: NeuPro: keeping track of patch locations

Postby Caitrin » Sat Oct 06, 2018 6:36 pm

I have been on the NeuPro patch 1 mg. for one week and have not once experienced those jerky leg movements I had 24/7. It has been a challenge finding those areas on my body on which to apply the patch. One fell off while showering two hours before I was to put on a new patch so I waited another two hours before applying the new one. Is there an optimal time to apply. I also wonder when I will have to increase the dosage to 2 mg. Hope not.

Rustsmith
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Re: NeuPro: keeping track of patch locations

Postby Rustsmith » Sat Oct 06, 2018 8:17 pm

Caitrin, because the patch slowly delivers medication over the entire time that it is applied, the timing isn't as critical as it is for pills. When I was using it, I switched out in the morning only because that was when it was most convenient for me.

As for when/if you will need to go to 2mg, you will know when the time comes. But that is like asking how long you will be able to stay on 0.125mg of pramipexole. Since everyone is different, no one knows.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Caitrin
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Location: New Jersey

Re: NeuPro: keeping track of patch locations

Postby Caitrin » Mon Oct 08, 2018 11:37 pm

Thank you for your input and it has been 11 days now on 1 mg. patch. Early evening is best for me and I have steadily increased time I remove and apply the new patch. What a break this has been for me from 24/7 to zero leg jerks. I knew the time would come when I had to eliminate the carbidopa/levodopa after 30 years.

Caitrin
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Re: NeuPro: keeping track of patch locations

Postby Caitrin » Wed Oct 17, 2018 2:22 pm

After using the 1 mg. patch for two weeks I have augmented and will require the 2 mg. script my physician sent to the pharmacy. I thought I would be able to remain at 1 mg. but not the case. As discussed here I will have to find other sites for the larger patch which will not cause allergic reactions and will adhere. What is best way to cover the patches while showering as I did lose two and as we all know these are an expensive but effective DA alternative.

Rustsmith
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Re: NeuPro: keeping track of patch locations

Postby Rustsmith » Wed Oct 17, 2018 3:24 pm

I avoided the showering issue by removing the old one before the shower and applying the new one afterwards. The other option is to use tape to cover the patch, but then the tape has to remain in place since it would probably also pull the patch off.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Caitrin
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Location: New Jersey

Re: NeuPro: keeping track of patch locations

Postby Caitrin » Wed Oct 17, 2018 3:55 pm

Yes, once you place tape or a clean shield on the patch it must remain there until the patch is changed. I tried it and the patch did come off.

redshoes
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Re: NeuPro: keeping track of patch locations

Postby redshoes » Thu Mar 07, 2019 8:38 pm

Hi all,
My neurologist has put me on Neupro (after I was on 2.5 mg ropinirole for 13 years and started augmenting). I quickly went up to a 4 mg patch + 600 mg gabapentin + 6 mg melatonin, which juuuuuust about works, most nights. Fortunately, I can supplement this with a .5 mg ropinirole, if I have a very bad night.

The 4 mg patch is large, so I have to use medical tape to hold it all down. The tape always leaves an outline, so I can avoid that spot. But some of your comments lead me to think that it's not enough to avoid the “spot” of the previous patch, but also the “area.” For example, do you have to place the patch on the opposite side of the body?

If so, I’ve numbered my patches #1 through #14, with a pen, and the odd numbers can go on my left side—but now I’m not sure if I have to change areas as well as sides of the body.

Also, how do you know which area is more effective than others—that is, whether a bad night is a placement issue rather than, say, having had too much chocolate the night before?

Finally, a tip for placing the tape on the patch with my non dominant hand—put the tape on the patch first, before removing the backing from the patch! It only took two or three times before I thought of this, and have been very pleased with myself, lol.

Thank you for all your comments, and wonderful advice.
redshoes

Rustsmith
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Re: NeuPro: keeping track of patch locations

Postby Rustsmith » Thu Mar 07, 2019 9:02 pm

redshoes, the important thing is that the patch should not go onto a section of skin that is still irritated from a previous application. So, if the new patch is near on old site, but doesn't hit the old area of irritation, then you are okay.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Caitrin
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Location: New Jersey

Re: NeuPro: keeping track of patch locations

Postby Caitrin » Mon Apr 01, 2019 4:18 pm

I have very sensitive skin and now, after a three month extended vacation in south Florida this past winter, have red patches of skin wherever I applied the Neupro 2 mg. patch as well as intense itching. I also have a script for the 1 mg. patch which is less irritating and tried adding a 50/100 mg. tablet of Sinemet at night. This worked well but I do not know if this combination is inadvisable. Any input is appreciated.

Polar Bear
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Re: NeuPro: keeping track of patch locations

Postby Polar Bear » Mon Apr 01, 2019 6:34 pm

Sinemet is excellent at dealing with the rls symptoms but should not be taken regularly.
It can cause augmentation very very quickly. Please do not take it on a regular basis. It is very tempting when there is something that will help but you really do not want to take any medication in a way that could trigger augmentation.
Neupro is a Dopamine Agonist and adding Sinemet is adding further DA.
Some people get benefit from Sinemet by just using it say.... every 3 or 4 days.
Please bear in mind that it is not good for using every night.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
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Re: NeuPro: keeping track of patch locations

Postby stjohnh » Mon Apr 01, 2019 8:42 pm

Neupro patches are very irritating and nearly half of all people trying them have to stop because of rashes.
Blessings,
Holland

Caitrin
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Re: NeuPro: keeping track of patch locations

Postby Caitrin » Mon Apr 01, 2019 9:20 pm

I am thinking that Sinemet goes directly to dopamine receptors in the brain but that the Neupro patch does not as it is a DA and this class is chemically different and has different side effects. Having taken the patch since September I know that is has the advantage of delivering the medication steadily over 24 hours whereas Sinemet must be taken every 5-6 hours. My thinking is that a 2-3 day reduction from the 2 mg. to 1 mg. Neupro patch with the addition of a small quantity of Sinemet would give my body a rest from the water retention and skin sensitivity issue.

badnights
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Re: NeuPro: keeping track of patch locations

Postby badnights » Thu Apr 11, 2019 5:33 am

My thinking is that a 2-3 day reduction from the 2 mg. to 1 mg. Neupro patch with the addition of a small quantity of Sinemet would give my body a rest from the water retention and skin sensitivity issue.
If you take that "small quantity" of Sinemet every day, you're setting yourself up for augmentation. The risk is higher with a bigger dose, but it's still there with a smaller dose. Augmentation is lifetimes worse than the worst symptoms a person ever has in an un-augmented state.

To lower your Neupro dose, try combining the lower dose with a med that's not in the dopamine class - one of the anti-convulsants (gabapentin or Lyrica, or Horizant if you can afford it) or a medium-potency opioid like hydrocodone. Even low-potency codeine. Or your doctor might be more willing to prescribe Tramadol, which is not technically an opioid but works as well for many WED/RLS sufferers.

You're right, Sinemet and teh DAs are not the same thing, though they're all dopamine-type meds. Sinemet becomes dopamine itself in your body, whereas Neupro and the other dopamine agonists activate the dopamine receptors on your nerve cells. The side effects are likely to be different, but the liklihood of augmentation from Sinemet is much higher than from the DAs (for DAs it's roughly 75% of people will have augmented after 10 years).
Beth - Wishing you a restful sleep tonight
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