February 26, 2020 at 8:43 pm #18045Scott MilsteinParticipant
Does anyone have any experience with the Neupro patch. My Neurologist talked to me about it. My symptoms are still relatively light. Right arm and hand stiffness and sone leg stiffness. I’m investigating it before I make a decision.
February 27, 2020 at 3:37 pm #18066
my neurologist has talked to me as well about the NeuPro patch. I am already on levodopa/carbidopa, 5 – 6 pills a day. The way she explained the patch to me is that it will support/ boost the levodopa that I am already taking, so ideally get good results without dyskinesia happening. I am most likely going to start on it in about 2-3 weeks. I realize it can have its own crazy side effects but I really need something! I am curious about other people’s experiences too, so will watch this space.
February 28, 2020 at 5:09 pm #18078Andy CParticipant
<p style=”text-align: left;”>Hi guy i have been on 8mg patches for 4 month and 4 levodopa/carbidopa 250mg/25mg and 5mg of clonazepam a day and yep all have diverse side effects but if i miss any part the day can go bad very quickly especially if I forget or run out of patch i know it will be a difficult day. We are now looking at either more ad stronger patches or a levodopa pump similar to insulin pump. Side effects are almost a symptom by themselves with parkinsons ad different med regimes we all have. I will only say this tell the doctor about the side effects but don’t stop or change meds without discussion with you neurologist – good luck Andy</p>
March 3, 2020 at 11:16 pm #18155Robert HarrisParticipant
Neupro (rotigotine) is a dopamine agonist (makes dopamine work better), similar to other dopamine agonists such as Mirapex (pramipexole), and Requip (ropinirole). The difference is that Neupro is a patch that releases the medicine onto the skin, where the medicine then passes through the skin (transdermal) and is absorbed into the body.
The monograph accompanying the product contains the usual precautions, including nausea, vomiting, sleepiness, dizziness, in the 10 to 15% range for the 4mg/24hr patch. I have been using the 4mg/24hr patch for about a year now and it has produced no side effects as far as I can tell–Parkinson’s itself and the other meds for it cause side effects such as constipation, so it’s hard to separate.
Personal use and experience: Take the advice not to put the patch on a skin area that contains hair. The patch adhesive is quite strong, even pulling it from a hairless area is rather unpleasant. My neurologist has me put the patch on at 10 pm and take off at 6 am, to help what he thinks is RLS (restless leg syndrome), but which I think is spinal myoclonus. Also, a bit of a headache is that the same skin area cannot be used again for two weeks, meaning that you have to identify and track 14 places on your body that you will visit sequentially every two weeks.
The Neupro patch does seem to help a little. Sometimes when I forget to put it on, I sleep the same way as when I had stuck it on. Other times, I think I do sense that it is doing something.
So far, good. I’ve had bad experience with dopamine agonists. Before I was clearly diagnosed with PD, I went to a doctor who prescribed Requip (rpiniriole), which caused me to nearly lose consciousness at work. A few months later, I was prescribed Mirapex (pramipexole) 2.5 mg/ tid and I almost fell asleep while driving. After some research, I read that studies have shown that 1 mg/tid provides the most therapeutic dose and that more doesn’t help. So I stayed on it for along time, then reduced it to 1mg at bedtime to function as sleep aid. Finally, since it wasn’t doing much to help my insomnia, I quit that and now don’t take any praimipexole.
[Remember that you cannot generalize from one Parky to another, and that you should consult a neurologist specializing in movement disorders / Parkinsonism before making any changes.]
March 6, 2020 at 11:16 am #18192
I have been on Neupro for several years. My movement disorder neurologist started me at 1mg and ramped me up to 8mg which I have used for at least 4 or 5 years. Also 7.5 tabs/day of Sinemet, 1mg Azilect (rasagiline) and Amantadine (2/day). No side effects from the Neupro. My understanding of Neupro’s advantage is a more even availability, over time, in the body than oral agonists. Only two downsides: Even with Medicare Part D it is very very pricey. Also, you need to develop a chart for placement or you get itchy dermatitis. (e.g: Monday –left arm, upper, front; tuesday left arm, lower , front…etc.) or you can use the chart on the manufacturer’s website). I have a seven day rotation schedule. The mfg recommends 14 days. My neurologist says in my case the arms work better than other locations. 8mg patches use a lot of real-estate. Remember: “one size fits all” doesn’t apply to us “Parkies”.
March 12, 2020 at 2:59 pm #18267STEVEN OPPENParticipant
My neurologist is anxious for me to try Neupro, because my chief complaint is that I am deeply affected, both physically and mentally, when I enter those terrible “off” periods when my Rytary does not work as well as it should. Neupro, with its mechanism for continuous dose dispensing, should in theory help me avoid those “off” episodes. But , as others have already mentioned, most people on Neupro continue to take a form of levidopa, albeit at a smaller dose. I also wonder how well the patch will adhere to my skin once the humid weather of SW Florida makes its appearance. Will the patch stay in place, and what about when I go swimming in the Gulf?
Truth is that my having added a “booster” dose of Rytary in the afternoon is helping me avoid those awful late afternoon “off” periods for the most part. So, right now (I want to speak softly so that I do not disturb the PD gods), I don’t have enough of a negative experience to push me into trying another drug.
I have a new friend that has made an appearance – cervical dystonia. Oh, joy!
March 12, 2020 at 4:26 pm #18270
I am not a swimmer like Steven, so I don’t know about whether the patch will stay in place while swimming, but it seems to be stable in the shower. The key thing is to read thoroughly the instructions in the box. The instructions are probably on the Teva (the manufacturer) website too.
I try to find skin that is not wrinkled, make sure the patch goes on evenly and press firmly for about a minute. Also affix the patch when the skin is dry. I think the patch has a 26 or 28 hour life, so be sure to do it at the same time each day.
March 12, 2020 at 5:34 pm #18271Andy CParticipant
G’day Scott and all the other Parkinson’s Warriors in this string
I have been using Neupro 8 mg patches for about 6 months and i shower sometimes multiple times a day, have swum in swimming pools and in the surf and been tropical/humid environments and dry/cold environments. To avoid the risk of the patch coming off, not likely in the shower unless not applied firmly, I tape it on with strong waterproof tape or get one of those waterproof cover seal patches to put over it to keep it dry and on.
You are fortunate you are being advised patches and a reduction in levodopa i have gone other way doubled the levodopa/carbidopa 250/25 mg and now looking at 16 mg patches and doing an apomorphine test on the 21st of this month to assess to either increasing oral/patch meds or having a dopamine pump. All because my off days come more frequently, last longer, are more severe, and take longer to recover from. So for my own sanity and that of my wonderful fiancee, who is also my primary caregiver who still works 12 hrs a day 5 days a week and to relieve the concerns and frustration of brilliant MS Neurologist we all know we have to do something rather severe and soon.
I have had no problems with the patches as long I place them on air dry, wrinkle free skin like outer edge of shoulder and top of thigh. I find it also helps if you shave those areas occasionally as the patches seem to stick better. Also when you remove the patch rubbing some tea tree oil or eucalyptus oil on the place where the patch was removes any residual adhesive and helps avoid any irritation, reactions or itchiness that may occur during or after you remove the patch. And don’t forget to rotate around 4 or 5 different places on your body every morning when you apply, repetitive placements on the same place for multiple days can cause some really nasty irritations.
Good luck with the Neupro Patches and I really hope they do the trick for you. Best Wishes Andy
May 16, 2020 at 1:38 pm #18612
Has anybody noticed a difference in the efficacy of the patch when it’s placed on different locations of the body? It was possibly a coincidence, but I was sticking it on my thighs for about a week, and truly had a terrible week. The day I switched it on to my arm, I had a much better day. I tried to figure out what was different from the previous week, and the only thing I could pin down was the patch location. Any thoughts on this would be welcome!
May 22, 2020 at 7:04 am #18633DavidParticipant
Hi I was prescribed the patch bit felt terrible after 3 days and removed it. Instantly better, but the core problems remain. Advice anyone?
May 22, 2020 at 9:25 am #18636
My movement disorder neurologist said that, in my case, I would have better luck using it on my upper arms rather than my thighs.
May 22, 2020 at 9:53 am #18637
Thanks Julian, that makes me feel less crazy! LOL.
David – I felt terrible when I started the patch as well. What I ended up doing (after ripping it off after one day of almost total shut-down), was I weaned myself on to the patch, just using half a patch a day, plus reduced my dopamine to pre-dyskenisia dosage (all on Dr.s orders, of course). So now, after two months I feel OK, but I can’t honestly say my tremor or stiffness is any better. I still feel like I need more dopamine. I think I notice it the most with my sleeping, which is to say I mostly sleep through the night instead of tossing and turning for a couple of hours each night like I used to. Also my dyskinesia is gone. My insurance does not cover it, so I am debating whether it is worth the price ($122/month).
My plan at this point is to wait a bit longer, hopefully get back to my ‘normal’ level of exercise when the gyms open again, and see what unfolds in the next 2-3 months.
Thanks for sharing.
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