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    • #18045

      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.

    • #18066
      Christine
      Participant

      Hi Scott,

      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.

      • #25385
        M B S
        Participant

        I’ve been on the 8 mg Neupro Patch  for about eight months. The biggest complaint is it’s causing alopecia.  I’m losing my hair. It seems to be helpful.

    • #18078
      Andy C
      Participant

      <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>

    • #18155
      Robert Harris
      Participant

      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.]

    • #18192
      JulianH
      Participant

      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”.

    • #18267
      STEVEN OPPEN
      Participant

      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!

       

      • #25387
        Beth T Browne
        Participant

        Is Rytary high in cost where you are or what insurance you have?  Even with one of the discount cards it is still in the $300’s.  It is the only thing that doesn’t cause nausea.  I lost 5 pounds and I only weighted 98.  Now 93 and can’t gain.  So I have not been taking anything, and my doctor said if I feel better without meds, she is fine w/that.

    • #18270
      JulianH
      Participant

      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.

    • #18271
      Andy C
      Participant

      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

    • #18612
      Christine
      Participant

      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!

    • #18633
      David
      Participant

      Hi I was prescribed the patch bit felt terrible after 3 days and removed it. Instantly better, but the core problems remain. Advice anyone?

    • #18636
      JulianH
      Participant

      My movement disorder neurologist said that, in my case, I would have better luck using it on my upper arms rather than my thighs.

    • #18637
      Christine
      Participant

      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.

       

    • #25259
      Rick Tabakin
      Participant

      I’ve been using the Neupro patch in addition to carbidopa/levodopa 25/100 pills for 3+ years.  It works well.  I started with 2 mg, then got raised to 4 mg.  The patch needs to be placed in a different location each day.  If you don’t do this, the skin will become irritated (likely from the adhesive).

    • #25351
      Darell
      Participant

      I used the patch for about 8 months but had to stop because even though the medication helped me a lot, I became allergic to the adhesive on the patch and developed huge welts. I would recommend trying the patch if you can. I’ve had to try many different medications to find the one that works for me. Don’t give up Parkinson’s doesn’t have a one size fits all treatment.

    • #25370
      JulianH
      Participant

      <p class=”p1″>I’ve been using Neupro for a number of years.<span class=”Apple-converted-space”>  </span>I started with the 1mg pstch snd am now using an 8mg for 24 hours and a 4mg for 12 hours.<span class=”Apple-converted-space”>  </span>I’ve been told by my neurologist that because of the transdermal delivery, the dose is more even than taking an equivalent med by mouth.<span class=”Apple-converted-space”>  </span>The manufacturer recommends that you put the patch in a different spot over a two week period.<span class=”Apple-converted-space”>  </span>Otherwise you get a painful dermatitis.<span class=”Apple-converted-space”>  </span>I can attest to that.<span class=”Apple-converted-space”>   I can get away with a 7 day rotation.  </span> I made a chart for placement. <span class=”Apple-converted-space”>  </span>So, today, the patches are on “left arm – front – down”.<span class=”Apple-converted-space”>   My neurologist recommended using it on the arms.  It</span> is important, after application, to hold it down with warm hands for about a minute, so I set Alexa to time it.<span class=”Apple-converted-space”>  </span>There is a picture chart in the box, but the Neupro website has a much better one in color.<span class=”Apple-converted-space”>  </span>I have it taped to my bathroom mirror so that my caregiver and I can concur on the spot-of-the-day.<span class=”Apple-converted-space”> ( </span>I also set<span class=”Apple-converted-space”>  </span>my Amazon Echo Alexa unit to sound an alarm when it is time for my Sinemet, exercise, and when I can eat. )</p>

    • #25371
      JulianH
      Participant

      Whoops. I think I made a mistake in the last post. Here it is in plain text.

      I’ve been using Neupro for a number of years. I started with the 1mg pstch snd am now using an 8mg for 24 hours and a 4mg for 12 hours. I’ve been told by my neurologist that because of the transdermal delivery, the dose is more even than taking a different med by mouth. The manufacturer recommends that you put the patch in a different spot over a two week period. Otherwise you get a painful dermatitis. I can attest to that. So I made a chart for placement. So, today, the patches are on “left arm front down”. it is important, after application, to hold it down with warm hands for about a minute, so I set Alexa to time it. There is a picture chart in the box, but the Neupro website has a much better one in color. I have it taped to my bathroom mirror so that my caregiver and I can concur on the spot. I also set my Amazon Echo Alexa unit to sound an alarm when it is time for my Sinemet and when I can eat.

    • #25374
      Phil Brown
      Participant

      II have had PD since 2014.   have been on neupro patch for about 18 months.   Significantly reduces my tremors.  I am on 2mg/24hr.  When I first started my neurologist said after a few weeks I could go up to 4mg.  I tried that but the side effects were terrible including nausea and fainting a couple of times.  I went back to 2mg and the side effects stopped.  My wife thinks it even helps my mood.  She says I get more stressed if I forget to put it on.  I wear it on the upper arm close to the shoulder.   I had some skin irritation at the start but not so much now.  If the skin does become irritated I find a zinc oxide cream helps.  When I saw my neurologist in May she said there was great improvement since I have been on the patch.  I am seeing her again in a few days so hopefully will be a bit more improvement.

       

    • #25378
      Jan
      Participant

      I wish I had been aware of all of these suggestions for optimizing the use of the Neupro patch when it was prescribed for me a couple of years ago! I had increased insomnia after I started the Neupro, and the patches weren’t staying on very well, so I tried wearing it only for about 10-12 hours and removing it well before bedtime. I didn’t notice much if any improvement in my movements so didn’t feel that it was worth the hefty price tag. After reading some of the responses that include tips for using the patch, I almost want to try it again!

    • #25382
      Ossama Younis
      Participant

      I have been on Neupro patch for about one and a half year. It helps a lot give a me a good night sleep. The problems now are: (1) If I forget it or miss it at the times of waiting for refills, I feel terrible the next day, and (2) I feel its impact only if it is put on my upper left arm. If I put on my right arm, I do not feel its impact. I did not try it anywhere else in my body…

    • #25383
      Rick Tabakin
      Participant

      I have been on the Neupro patch for 3 to 4 yrs.  It works well.  Need to change where you place the patch each day to limit irritation.

    • #25390
      Jennifer Blackstone
      Participant

       

      I use the NeuPro patch 3 mg per day. In general, it sticks well if I’m on a place that doesn’t Bend much. my thighs and my butt are the best places. It itches and makes a red mark If I put it on my stomach or on the underside of my arm. I don’t use much though cuz it bends too much. I did not have to wean increase the patch because I was already on an agonist at about the same level. So it’s working for me and making my days more smooth. I don’t like the cost. C’est la vie!

      Here is my back story if anybody wants to read it.

      When diagnosed in 2011, age 53,
      I started with a small amount of mirapex ER, <span;>0.375 mg,, an<span;> agonist,  After 9 years, I was taking 3 mg of mirapex ER and about five Sinamet 25-100 per day and not doing great. I learned the true meaning of off time.  I was still playing tennis four times a week, though.

      2 years later and after a lot of anguish and anxiety, my doctor and I feel comfortable with balancing a few different meds and I’m feeling pretty good, i.e. I can function most days, for most of the day, without any major wearing off. But there’s no mistaking that Parkinson’s is now running my life.

      Here’s where I am at the moment. I take meds seven times a day, at increments of 2.5 hours. I use 14 <span;>Sinamet, 2 at a time, 6x per day and 2 long acting at night. I switched from mirapex to the 3mg NeuPro for an agonist.  I tried the patch because I was so up and down during the day, I hoped it would make my days more even.  It seems to be working.

      I also started amantadine this year 2022.
      It is an extender drug and I was wearing off before the two and a half hour next dose. I was taking two per day and right away it made me dizzy and off balance. I fell and stumbled a few times , and eventually had 6 stitches fall with a lot of blood in May 2022. So I tried the ER version of amantadine which is called Osmolex ER. This drug is really expensive, but the balance issue is much better.

      WARNING, you’ve all heard that PD drugs can act differently on each person.  Well, RYTARY took me down!  My prior doctor thought I would get used to it as she prescribed more and more . I felt horrible and ended up, after 5 weeks, in the ER. After that, I had panic/PD attacks, some lasting hours, about every other day for 1.5 years!  I had four more ER visits during that time due to hyperventilation . My advice: NEVER take a med for more than a few days if it makes you sick!

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