Neupro Rotigotine patch it is a dopamine ... - Cure Parkinson's

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Neupro Rotigotine patch it is a dopamine agonist.

supermom051959 profile image
52 Replies

Did anyone use this? If so did it work. My dad is getting it for PD. The Doctor said it works miracles. I am concerned about the side effects.

Thanks

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supermom051959
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52 Replies
themom profile image
themom

The patch didn't work for me. I ended up worse than when I was first diagnosed with Parkinsons.

supermom051959 profile image
supermom051959 in reply to themom

What happened?

lilao profile image
lilao in reply to themom

same here they kept increasing the dost tell ing me i would improve but when i got to maxamim dose i felt worse than ever so then it took me another 4 weeks to get down to a low dose before i could stop using it but everyone is different what works for one might not work for another.

landman profile image
landman

I have been using Neupro for one year. No side effects. Very positive results. FYI:The glue of the patch can irritate. I use hydrogen peroxide to clean. Then I use hand creme. Go to Neupro.com Get discount card.

supermom051959 profile image
supermom051959 in reply to landman

landman did it help you improve motor skills. My dad cant stand up and balance and do everyday chores. He cant walk either. He can only take a few steps

landman profile image
landman in reply to supermom051959

the drug that gave me back my motor skills, and I was bad, is amantadine. 3 hours after taking, I went from the shuffle to walking normal. Amantadine is a generic drug. It is my wonder drug next to pot.

Dennis profile image
Dennis in reply to landman

How does pot effect you? Are upi geting positive results?. My Neurologist has suggested to me to try it. So far we have not.

landman profile image
landman in reply to Dennis

Relaxes me. I have more control of my body and mind. I take single puffs throughout the day, as needed and an ounce last me 8 months. Check out this site for a Parkinson,s cure. fightingparkinsonsdrugfree.com

supermom051959 profile image
supermom051959 in reply to landman

they never prescribe that - I thoughjt the patch was suppose to do that

so what benefits does the patch bring to you?

landman profile image
landman in reply to supermom051959

Each of us has a Dr. The Dr practices medicine. It is a hit or miss with each of us in regards to meds and which ones work. I would have to say the patch quiets my tremor, as does the Amantadine.

supermom051959 profile image
supermom051959 in reply to landman

ok I am getting so tired of watching my poor dad not being able to walk well, stand up and put his pants on.

He really doesn t have much of a resting tremor.

I pray this works for the other problems he is experiencing

Crbee3 profile image
Crbee3 in reply to landman

I am on the 8 mg patch and I am having no problems... the glue can irritate but then I just out cream on it, itchy a tad

carolineb211 profile image
carolineb211

Didn't work for me and I ran out of places on my body to put them.!!!

supermom051959 profile image
supermom051959 in reply to carolineb211

did you have side effects?

Susie01 profile image
Susie01 in reply to supermom051959

I take Azilect, my neuro insisted that neupro patch would help with my increased tremors...I did it for 2 wks. My blood pressure shot up and tremors increased...Meds that work for one person do not always work for another. I discontinued it.

landman profile image
landman in reply to carolineb211

If I may suggest a site. fightingparkinsonsdrugfree.com

Parkinson's is not our problem. Our problem is our attitude about Parkinson's

Crbee3 profile image
Crbee3 in reply to carolineb211

I rotate the patch between by both of my hips and on the back side

jillannf6 profile image
jillannf6

hi I HAVE PSP AND NO MEDS OR PATCHES FOR IT

SO NO SIDE EFFECTS!

THAT IS THE GOOD SIDE/ OTHER THAN THAT THERE ISN'T 1

LOL jiLL

:-)

doggie profile image
doggie

The patch has worked out great for me.

No side effects!

supermom051959 profile image
supermom051959 in reply to doggie

Doggie how old are you? My dad is older he is 88. He cant walk because of Parkinsons

landman profile image
landman in reply to supermom051959

Drug has been none to NOT work on 80+ go to Neupro.com

supermom051959 profile image
supermom051959 in reply to landman

Iwas on the drug site and I didn't see the reference to it not working for over 80yrs old. I read the info a week ago already. I called them and they just told me what i read on their site.

I just don't want my dad's blood pressure to drop any lower he is on dopamine and it is already low from that drug

landman profile image
landman in reply to supermom051959

Be aware that studies are being done about why PD patient's blood pressure drops significantly after eating. plus remember PD affects everyone differently. The only human malfunction that affects everyone differently. I believe that is why we all take different drug cocktails. It is called practicing medicine for reason. Just remember to help the Dr, by keeping a journal daily.

supermom051959 profile image
supermom051959 in reply to landman

i am afraid to start him on this he is 88 and I dont want to kill him with this patch

blood pressure side effect is very very scary

landman profile image
landman in reply to supermom051959

What does the Dr recommend? Do you feel comfortable with the Dr? Reality is your Dad is up there in years and he is limited on what he can do. My Mom is 88 and I saw her for the first time in 7 years. She still lives alone and is the last of her generation in relation to family. She is basically healthy, which shocks me because she smoked since 21. The last year my Father was alive, I advised him to talk to his Dr about marijuana. He did and the Dr gave him script for marijuana in pill form. This helped him greatly. Helped his nausea and his appetite. GOD bless you and your Dad.

supermom051959 profile image
supermom051959 in reply to landman

the dopamine drops blood pressure too

doggie profile image
doggie in reply to supermom051959

I'm 60.

supermom051959 profile image
supermom051959 in reply to doggie

Doggie how old are you? My dad is older

supermom051959 profile image
supermom051959 in reply to doggie

Thanks I am concerned my dad is 88 and you are much younger . Meds effect older people differently

The Patch works for me Ok apart from the occasional redness on the skin depending where I put it.

You can eventually run out of a areas, as you are not supposed to use the same spot for 14 days after.

some problems with them are showering or bathing they can come off.

Also please note the skin area has to be competely free of body hair or the patch will not stick down properly.

supermom051959 profile image
supermom051959 in reply to

did it improve motor skills?

in reply to supermom051959

I think it did for a time, but I suspect I am needing to up the dose or come off.

landman profile image
landman in reply to

The glue irritates me. I clean my skin w/hydrogin peroxide after I remove patch to get glue off skin. Then use hand creme. I only use in 4 spots.

Jash profile image
Jash

I was on 4 mg and it worked fine for about 6 months then I started to have vision issues like seeing visual prisms and dots moving across the floor. Opthamalogists identified this as a visual hallucination like one experience in migraine(which I've never had). As a consequence, my Neuro reduced the dose to 2mg-- which is almost nothing-- sometimes I skip the patch altogether and barely notice a difference. The prisms and dots have disappeared.

supermom051959 profile image
supermom051959 in reply to Jash

did it improve motor skills?

Jash profile image
Jash in reply to supermom051959

Yes, I think so.

soup profile image
soup

Surely if a med works, it works. If you get side effects they stop once you stop the med. Nothing in life is 100% safe, but then neither is having Parkinson's.

sharong profile image
sharong

Hi, I was grateful for these patches when I was in hospital with an infected gall baldder which made me so sick I could not keep my usual tablets down. They worked for me but not as well as my usual medication which I have now returned to. I find the inevitable side effects of medication infinitely preferable to the symptoms of Parkinsons disease. Sharon

rons profile image
rons

I didn't get on with DAs, they made me fat +20kg and gave me oedema and ended up in hospital. A couple of months before I had changed to Neupro patches and had problems with being hairy and sweaty, this peaked in the hot hospital when they kept falling off and the nurses locked them away (if it falls off you use a new patch). I ended up immobile. they weren't for me really. tip I got: use a 3M Tegaderm Plaster (oversize) on top of the patch for extra adhesion

i'm on stalevo now - other side effects are crappy but much better now - and a lot lighter!

Ulli profile image
Ulli

My husband started out with the lowest dosage, it was fine. When he got up to 4 mg, he could not sleep anymore, lost weight, had hallucinations. Needless to say, he is off the patch and back to his other meds again.

supermom051959 profile image
supermom051959 in reply to Ulli

o h no that is what I am afraid of halluncinations

Jash profile image
Jash in reply to supermom051959

The hallucinations are mild, if you get them -- like seeing ants on the floor or colors in a prism. If that happens, they'll change your med. it's worth a try.

supermom051959 profile image
supermom051959

Ok thanks my dad is 88 I am worried about halluncinations

supermom051959 profile image
supermom051959

did it help his motor skills?

eh110575 profile image
eh110575

I have been on this with the start of the clinical trials. As you read the answeres you see everybody is not effected the same. That is normal. Work for some others not but is certainly worth a try for most people!

srarndt profile image
srarndt

I cannot do DAs either. Started with Requip...fell asleep while speaking, driving, sitting at a stop light, teaching...saw hallucinations...people, animals - darting out in front of the car whilst driving, phantom road signs...felt horrid, had terrible edema, etc...ugly withdrawal process,,,

BUT, just as PD presents itself differently, there is no way to know all this in advance of trying...even t though it is no fun playing the guinea pig...just talk to your MDS and your best pharmacist before starting or stopping any meds...

Best wishes,

Steve

Bisbee, AZ

supermom051959 profile image
supermom051959

I don't know what to do. I am so upset after reading all the side effects and all of the experiences that you guys have had with the patch. Looks like more bad then good. I want to cry!

ozepook47 profile image
ozepook47

The following is an edited extract from "Living Medical eTextbook: Neurology: Parkinson's Disease Edition Chapter 5 Management of Moderate to Advanced Stage of PD"

"After a temporary withdrawal due to crystallization in the patches, transdermal dopamine agonist rotigotine has now been reformulated and returned to the market. It is available as 1, 2, 3, 4, 6, and 8 mg patches that should be applied daily to abdomen, thigh, hip, flank, shoulder, or upper arm on a rotating basis. In advanced-stage PD, it should be initiated at a dosage of 4 mg/24 hours, and then can be increased weekly by 2 mg/24 hours to a recommended dose of 8 mg/24 hours. Rotigotine 8 and 12 mg/day reduced “off” time by 1.8 hours/day and 1.2 hours/day, respectively, and more than doubled “on” time without dyskinesia in the PREFER placebo-controlled trial. It should be noted that doses higher than 8 mg/day are not FDA approved. In another study, 514 patients with advanced PD and =2.5 hours daily “off” time on levodopa were randomized to rotigotine 2, 4, 6, or 8 mg/day or placebo. The 8 mg/day dose significantly reduced “off” time by 0.85 hours more than placebo ; there was a trend suggesting possible dose-dependent improvements but doses lower than 8 mg/day did not induce changes that were significantly different from placebo. Rotigotine was found to be noninferior to pramipexole in a direct comparative study. 12/4/12: Open-label extensions of CLEOPATRA-PD and PREFER studies find adjunctive rotigotine to be safe and effective in advanced PD for 4 to 6 years.

Dopamine agonists are associated with impulse-control disorders (pathologic gambling, compulsive sexual activity, compulsive shopping, binge eating), which usually resolve with dose reductions or treatment discontinuation. Somnolence—including both slow-onset sleep preceded by drowsiness and sudden-onset sleep—is a class effect of dopamine agonists. Like other dopaminergic agents, dopamine agonists may also produce hallucinations, orthostatic hypotension, and worsening of cognitive impairment. Transdermal rotigotine causes application site reactions in nearly one-quarter of patients using it to treat advanced PD. These largely consist of localized erythema, edema, and pruritus in the patch area, but more generalized skin reactions may occur in a small proportion of patients. Patients should avoid exposing rotigotine to direct heat sources, and the patch should be removed prior to undergoing MRI. 9/24/12 :The FDA is conducting an ongoing review of possible increased risk of heart failure with pramipexole."

This should answer many of your questions. It is important to know if you are taking l-dopa as well. It may be that the dosage of l-dopa has to be reduced after commencing a dopamine-agonist. You should discuss this with your neurologist who, if in agreement, will set out a reduction dose plan. DO NOT TAKE IT UPON YOURSELF TO REDUCE ANY MEDICATION WITHOUT THE GUIDANCE OF THE PRESCRIBER. YOU MAY CAUSE MORE HARM THAN GOOD BY SUDDEN DISCONTINUATION OF ANY MEDICATION.

Again, I emphasize, everyone is an individual and may react diferrently to anyone else. Your neurologist and GP should have your complete history available and on this basis will prescribe what they think best for your individual case. (Apologies if you find this too technical but it is an excellent reference that is kept up to date on a regular basis. It is only available to health professionals such as medical practitioners, pharmacists, nurses etc.)

Hikoi profile image
Hikoi

Supermom

i can imagine your confusion with all this information. All drugs have potential side effects, even simple paracetamol. It is a balancing game for all of us.

Your father is being given an agonist at 88 years. Agonists are less commonly used as people get older as older people do not tolerate side effects so well. They are often started on sinemet.. You could ask his doctor about these things and his experience of treating older people with patches.

raveneaux profile image
raveneaux

I just stopped Neupro 2 mg patch. I started it in October 2012 at first diagnosis. Initially, I saw a vast improvement in symptoms. I could walk better, less stiffness, better balance. Slowly, I experienced almost every side effect - and was in such a "brain fog" that my work performance suffered. The :"deal breaker" for me was the almost uncontrollable pain in my legs. It went to the bone and it was not controlled with Hydrocodone 10 mg - even if I took 2. Two days after stopping the patch, I was a different person; however, the stiffness in my legs came back and by yesterday (about 10 days later), it was very bothersome. I saw my neurologist yesterday and she started me on Requip 2 mg. I was hesitant to take it but agreed to try it. I took the first dose last night. I felt a noticeable improvement in my legs, and went to sleep easily. I woke up feeling rested and refreshed...at 2:15 a.m.! So, I was fighting to stay awake when it was time to come to work. ugh.

Hope your dad gets relief with the patch.

bleu22 profile image
bleu22

Neupro has such extreme side effects and the person on the drug does not realize that they under the infuence of a mind alterering substance. My husband turned hostle and compulsive spent money and hypersexual. Would not admit any of it, and denied the drug had any effect on him. Only after he nearly killed himself as he blacked out behind the wheel of the car and the doctor took him off the agnost did he after months of withdrawal admit that it might have caused the problem. all side effects mentioned above stopped after the drug was removed.

This is an addictive drug, that makes you think you are better than you are. Becareful and listen to your loved ones comments. They see what you cannot.

dulcimur profile image
dulcimur

I am on 8 mg and the patch never stays on. I have to put a big bandaid on it. It is not doing a thing. I'm shaking like crazy. The doctor ordered a 2 mg patch to add to this one. I guess we'll see but I'm very disappointed. I was on pramipexole before and it stopped working. I was diagnosed 3 years ago but I think I've had it much longer. I'm 61. I only have tremors on my left side. Wwhat's with that?

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