We sent out a questionnaire to 70 friends in Parkinson’s Women Support for some feedback on their experience taking the prescription medication Neupro® (Rotigotine Transdermal System) for the treatment of the signs and symptoms of early-stage Parkinson’s disease.
The questionnnaire was sent to the same 70 friends as those who were invited to participate in our recent poll on Rytary™. The day after we published our story about the poll of women’s experiences trying Rytary, several latecomers responded, changing our original tally.
The results of the two usage polls are interesting because now both Rytary and the Neupro patch tallies are identical. Of the 41 women who replied to each of our polls regarding their use of Rytary and/or the Neupro patch, 30 have not used Rytary, 30 have not used the Neupro patch. 11 women have used or are using Rytary and 11 have used or are using the Patch. Three women out of the 11 have tried using both Rytary and the Neupro patch at the same time.
Usage result differs in our polls
There is a difference between Rytary and Neupro in the 11 women’s usage duration. One out of 11 stopped taking Rytary because of feeling ill, weak, tired and low blood pressure. Three out of 11 stopped using the Neupro patch because of skin irritation.
Even though Parkinson’s Women Support members realize that every person with PD has unique display of symptoms, we find that by telling our personal stories, we gain broader knowledge of PD and a deeper understanding of treatment for our own progression with the disease. Our intent is not to prescribe medical advice about the diagnosis, treatment or other medical aspects of PD but to share our experiences with women who also may be using or contemplating using the Patch. Always check with your movement disorder specialist for questions about the prescriptions and treatment that is best for you.
Approved in May 2007
In May 2007, the U.S. Food and Drug Administration (FDA) approved the use of Neupro (Rotigotine Transdermal System) in the USA for the treatment of the signs and symptoms of early-stage idiopathic Parkinson’s disease.
Neupro® is the first Parkinson’s “patch” you wear on your skin. The Patch delivers the dopamine agonist rotigotine through the skin, directly into the bloodstream. It releases the medicine 24 hours a day, providing stable, continuous delivery of medication.
Neupro – A skin patch
Neupro skin patches are small thin flesh-colored patches come in 2, 4, 6 and 8 mg dosing strengths to treat symptoms such as stiffness, tremors, muscle spasms, and poor muscle control in Parkinson’s disease. In early-stage Parkinson’s disease the initial dose is a 2 mg patch applied topically once a day. The Neupro Patch Placement Tracker drawings show you where to put the Patch. Watch an animated video on how to apply the Patch.
“The Neupro Product Use Brochure inside the product and the Neupro Parkinson’s Disease Patient Brochure have easy to follow relevant data, including the dose of Rotigotine that you’ll get per hour. More information can be found at their Tools & Resources page.”
In clinical studies, patients with advanced PD who added Neupro to their existing medication had almost 2 hours less “off” time—and nearly 2.5 hours more “on” time—than patients taking a placebo.
Adverse effects are possible
Common side effects in people taking Neupro for Parkinson’s disease are nausea, vomiting, sleepiness, application site reactions, dizziness, loss of appetite, difficulty falling asleep and staying asleep, increased sweating, vision problems, leg swelling, and uncontrolled, sudden movements of the arms or legs.
What 11 women in our poll said…
All but 3 of the 11 women who used or are using the Neupro patch thought that it was effective in a major or moderate way. The group of 11 have used the medication from less than one month–a couple for two days, one for three weeks– to over two years.
Comments from 11 women on why they tried using the Neupro patch
“Most importantly it levels out the roller coaster ride with carbidopa/levodopa and minimizes the “off” times in between doses. I have less rigidity and improved mood.”
“Neupro is great because helps beyond what anything other than Sinamet can.”
“The dopamine agonists (such as the patch) don’t do much for me. I’m using the Patch because I have some unusual symptoms when Sinemet starts to wear off, particularly like a ‘restless body syndrome.’ Fortunately, the Neupro seems to help slightly so I’m not as uncomfortable until I need to take my meds again.”
“I’m using Neupro because I had been on Mirapex for almost nine years and over that time had gained about thirty pounds. In talking to others I found at least four women who had gained between thirty and fifty pounds while on Mirapex but who had switched to Neupro and had found the weight had gone down without changing their eating or exercise habits. I’ve only been using the patch for three weeks, but I’m hoping to shed the weight!”
“My doctor suggested trying Neupro to help with urge incontinence and sexual symptoms (low libido and response, difficulty reaching orgasm)”
“I used Neupro to smooth out “the valleys of my daily meds. I started on 2mg, then 3mg and now I’m on 4mg. I like the idea of bypassing the gut.”
“The reason I went on Neupro was because my hands were continually curling, along with continual tremors of both arms. My sleep patterns were also getting weird, my rem sleep was getting worse and I was hallucinating more frequently.”
Comments from 11 women on negative side effects
All of the women mentioned that the major side effect with the Neupro patch was skin irritation under the patch.
Three of the women quit the Patch within the first month citing that the side effect–a significant rash under the patch–was too severe and the Patch was very hard to take. A fourth woman quit after 7 months because of the expense of the Neupro patch, but now she has recently returned to it.
“I’m pretty fair-skinned – the typical “burn every summer” type of skin! So it wasn’t too surprising that this didn’t work for me. I would call the reaction severe – I don’t remember any blistering, but it was just like severe sunburn – deep red, and painful. I tried, but I don’t think I got past a couple of days on the Patch. I never did very well with the agonists Mirapex, and Requip anyway. I could be the poster-child for compulsive behavior/online shopping & insomnia while on Requip!”
“I had problems with compulsive behaviors, nightmares, and vivid dreams.”
“I can’t tell for sure but I think I’m having more trouble sleeping. I have also had some recent stress in my life, so that could be the cause.”
“I experienced auditory hallucinations, fatigue, and had to remove the Patch after 24 hours due to the burning sensation of skin irritation under the Patch.”
“It bothers my skin a little. I often have to use tape to keep it on. Like most of the PD meds you need to drink a lot of water.”
Opinions on the burden of using the Patch spanned from very hard to use to not at all hard to use. All of the women were diligent about always using the patch as prescribed. The dosage was also across the board with 3, 4, 6, and 8 MG, used daily.
Positive comments on using Neupro patch
One woman who quit Neupro due to the expense, later returned to it saying “I had increasingly better suppression of bladder urges as the dose increased. Sexual response and function were sometimes improved but up and down seemingly unrelated to dose; libido is only distantly remembered. I also have improved fine motor, noticeable from Neupro 4mg and up as well as on Requip, and almost no tremor (I only had occasional 4th finger or index finger tremor anyway). Probably some gross motor improvement too.”
“I believe Neupro has definitely slowed my tremors. I feel fine on it, and it’s improved sleeping without waking up all night long. My rem sleep has continued, but sleeping seven hours without waking up is wonderful.”
Comments on Neupro patch as a replacement for…
“I was on 1.5 mg of Mirapex so my doctor started me on a 4 mg Neupro patch but she also gave me samples of the 2 mg so I could go to 6 mg of Neupro if need be. I’ve only been using Neupro for 3 weeks, and so far I am only using 4 mg. It is too soon to offer much feedback on effectiveness, but it seems to be similar to Mirapex in controlling my tremor.”
“I don’t actually remember stopping the Sinemet to take the Neupro, even though it might have made sense. At the time I tried it, my doctor and I were trying to see if I would tolerate the patch before actually making a change to the other meds.”
“I used Neupro after stopping Ropinirole (Requip.)”
“I stopped using Neupro due to the cost but recently returned to it. I tried using Ropinarole (Requip) which helped pretty well most of the time though perhaps not as well as the Neupro did.”
Comments on using Neupro patch In combination with Rytary
“My personal tests mixing Rytary with Neupro suggest that the two together may aggravate my dystonia.”
“Rytary has been challenging for me. I stopped the higher dose Rytary because it’s not predictable and causes too much dyskinesia for me. I’m now using the lower dose Rytary for night-time. Jury’s out on it.”
Comments on Replacing the Neupro patch
“After trying the Neupro patch, I’ve been taking Rytary for several months. The scheduling needs work. I feel good taking it, overall, but I’m having problems with the timing. And when my levels are low, my tremors are worse than ever!” I was in a study on this drug and I didn’t have problems like that at the time.”
“I switched to Amantadine cut down to 1 tab a day.”
“I started on Requip ER and had 2 major and some minor bladder incidents in the first 2 weeks. I tried Requip IR 3mg TID and couldn’t tolerate it, so tried 10mg ER then 12mg ER. The bladder control did improve but was not as good as on Neupro. Sexual symptoms remained variable.”
The cost also ranged from $25 monthly to over 200+ monthly. If you don’t have prescription coverage, don’t qualify for government-funded prescription benefits, and can’t afford to pay for Neupro on your own, UCB, the manufacturer of Neupro, may be able to help. To find out if you qualify for the UCB Patient Assistance Program, please call customer service at 1-866-395-8366.
Additional comments from the 11 women
“Placement of the patch is a huge factor: when placed on the belly, behind, or arm) it is horribly itchy. It’s a huge improvement for me if I put it on the thigh. If you put the Patch too low down your leg, over the muscle, it does deliver faster. You’ll feel like you popped double Sinamet and dyskinetic as you’ve ever been. This is true especially if you run or heat the muscle.”
“If you wear tight jeans or do yoga the Patch can detach.”
“1-2-4 mg is fine, 6 is dicey, 8 mg is bad for me. The higher dose is simply a larger patch. A patch should be developed that is more elastic like skin or has a crease in the middle.”
“The people from the pharmaceutical company UCB are great. Talk to them at their booth when you find them at PD conferences.”
“The patch lasts a lot longer than 24 hrs. If you keep it two days you’ll squeeze every bit of rotigotine, but your skin may suffer quite a bit more. I have a tough hide & like to save $.”
“I gradually increased from 1mg to 8 mg, with symptomatic help starting at 4mg and improving with 6 and then 8mg. The only side effect was sometimes mild itching and redness under the Patch, especially if left on more than 24 hours. I left it for 2 days sometimes and thought it still helped just as much. I stopped using Neupro because of the expense,” but I decided to try it again.”
“Sometimes the patch falls off. I adhere it to my thighs for 60 seconds. I put it on in morning instead of night because it tends to keep me awake.”
“Going up to 5 mg of the patch caused a lot of dystonia in my leg. 3 mg seems to be ok. Large patch bandaids over the patch helps them to stay in place. Also taking them at night seems to help me sleep better and have more movement in the morning.”
“To make the Neupro patch stick, I pick the spot– it stays on best on a soft fatty spot which I have plenty of– like my hip or belly. I put my hair dryer on low and thoroughly dry my skin – even if I haven’t showered – then apply the patch and again put the hair dryer on low and heat the patch up while smoothing and pressing it down especially on the edges. It helps to put on underwear and a snug or stretchy pants to hold it firmly in place. If it has good adherence initially it will stay on through a shower or even a bath.”
“Be patient and start with small dosages. I took 1mg for a month and then increased it to 2 mgs, which was enough to complement the Sinemet that I take.”
Other evaluations can be found on the Patients Like Me website.
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen