Neupro patches

[Shoeinthree]

I have been taking Neupro patches for some time now, and I am interested in how others were doing on Neupro ?

[Hidden]

I have been on Neupro for about 10 weeks.First 8 weeks it was marvellous but recently it has failed me a couple of times.Most of the time working well so I will stick with it for now, How are you doing with it?

[RLS-RBSD-Narcolepsy]

I am on Neupro and it is working well. Started out on the 1mg/24hr then bumped up to the 2mg/24 hr. I have the 4mg/24 hr that my doctor gives me from his trial samples. The biggest problem I have is that I get a little bit of a rash where the patch is on my skin but it clears quickly after removal. Unfortunately my insurance does not cover this medication so when my trials/samples run out I don't know when I am going to do. I am going to try calling the drug manufacturer and see if they can help me out.

[ookla in reply to RLS-RBSD-Narcolepsy]

Have you tried using rubbing alcohol before putting on the patch? When I started doing that I never got the rash again.

[Shoeinthree in reply to RLS-RBSD-Narcolepsy]

I don't understand why drug companies are not covering them, I am so sorry for that. I am so glad you get some relief from them, and I agree I also get the rash/sores from the patches

[Gonzo123]

I have been on Neupro Patches now for some months and find them the best so far although I am on a high dose of 8 mg. I am just awaiting Augmentation and I am sure p1pp1ns will tell you all about that possibility as she is far more up on it than I

[Hidden in reply to Gonzo123]

Wow, Gonzo that is a very high dose of the patch. I am surprised that augmentation hasnt arrived yet.

[Gonzo123 in reply to Hidden]

It is high but it seems to work for me in general. I do have the odd day when it doesn't seem to work and like others I have it in the arms now and again as well. I am dreading the day when augmentation might occur but will have to cross that problem if it happens. Hope it helps you Elisse.

[Hidden in reply to Gonzo123]

I dont use the patch now, i have done in the past, but i only got to 3mg and had to stop not because of augmentation but because of side effects.

[Gonzo123 in reply to Hidden]

What side effects did you have Elisse

[Hidden in reply to Gonzo123]

Hi Gonzo, as with all the RLS meds, the patch made me extremely sleepy and dizzy during the day. So i stopped it. I am sensitive to the meds, and i seem to okish on a very low dose of anything, then if i have to up the dose i get hit by the dizzy and sleepiness the next day. My body doesnt want to adjust to the med and those side effects will not go away. My tolerance to all the meds is low.

[Gonzo123 in reply to Hidden]

Hi Elisse, Now I was like that on Ropinirole. I became very sleepy and it was dangerous driving the car. I'm not so bad on Neupro Patches thank God.

[ookla]

I tried it. Didn't provide any relief for me. And after a week severe augmentation kicked in.

[Hidden in reply to ookla]

It failed me big time last night, not a minutes sleep.Going into arms so think augmentation possibly setting in for me.Anyway got a couple of good months out of it.Day ruined now as too dizxy and tired to drive, All plans cancelled grrrrrrr !..pipps

[ookla in reply to Hidden]

I HATE when it gets into my arms!!!! The augmentation was a nightmare... luckily, tramadol took care of it and after a few days, my rls was back to "normal". Hope you're able to find something to help you reset as well.

[Shoeinthree in reply to ookla]

That is just what happened to me for a week straight it went into my arms, I was so scared that it was the new normal for me I knew I could no way handle it in both legs and arms 24/7 the pain was crazy, so I dropped down to one patch of Neupro and omg it went away in my arms, I was never so happy now if I could only get my legs to stop

[ookla in reply to Shoeinthree]

It's those dopamine agonists... augmentation seems like it's only a matter of "when", not "if"

Glad you were able to get things back under control.

[Hidden in reply to ookla]

Thanks ookla , Tramadol only worked for a couple of days for me so using zomorph .Awaiting reply from DR B as to where to go from here x

[ookla in reply to Hidden]

After tramadol, the only thing I found to be effective has been 15 mg oxycodone (IR).

[Hidden in reply to ookla]

I would prefer an immediate release med to be honest but all I have available is zomorph which is a slow release morphine so I will have to go with that x

[ookla in reply to Hidden]

Morphine is so weak, the oral bioavailability is 20 - 40% at best... when my dr gave me ms contin (the US version of slow release morphine), it was utterly useless (except for making me fall asleep while people were talking to me). I hope your doctor gives you something better.

[Hidden in reply to ookla]

Ookla, do you take the oxycodone daily? Wondered if it looses its effectiveness over time? Have you tried fentanyl patch? If so what did you think of it? X

[ookla in reply to Hidden]

It's funny you should ask that. I just had a long post to someone the other day about this very thing. Due to my experience with tramadol, I'm very worried about developing tolerance and losing what little benefit I do get. I'm supposed to be taking 10 mg of oxycodone three times a day (oxycodone wears off after about 3 hours), but instead I'm only taking 5 mg at bed time to get me through the night (and another 5 mg if I wake up and can't get back to sleep). I'm doing nothing for my day time symptoms at this point because I'm almost certain if I did take the oxy as prescribed, I'd be getting zero benefit in no time. At least this way, more often than not, I'm able to get through the night. In a perfect world, I'd be taking 15 mg (the actual dose that gets rid of my symptoms completely, but has bad side effects for me) three times a day and feeling great. At this point, I've chosen to take 5 mg once a day and feel a tad less than miserable. As always, though, everyone is different... whereas I developed tolerance to tramadol after three months, I read about someone that's been on the same dose for many years and still loving it. So even though oxy would probably lose its effectiveness over time for me, that doesn't necessarily mean it would lose effectiveness over time for you.

No, I have not tried the patch. Either my doctor is unaware of it or unwilling to consider it. We've reached the limit of what she has to offer.

[Hidden in reply to ookla]

Thanks for reply ookla.I have has slow release oxycodone (targinact).Feel I would be better suited to an immediate release med as usually once I have actually managed to get to sleep I stay asleep.The slow release obviously dont give you the initial kick to help knock out symptoms .

[ookla in reply to Hidden]

I completely agree with you... but the doctors think the slow release will *eventually* reach a therapeutic level and, once there, maintain it around the clock, we just have to be patient for a few days while it builds up in our blood stream. I spent a week on oxycontin and never reached a relief level.

[Hidden in reply to ookla]

I would prefer an immediate release med to be honest but all I have available is zomorph which is a slow release morphine so I will have to go with that x

[beady3 in reply to ookla]

Hi there Ookla have you come off Tramodol if so what happened I seem to be getting on ok with it did have a blip weekend but ok last night take care

[ookla in reply to beady3]

I was on tramadol a long time ago. When I stopped taking it, I had nausea, diarrhea, hot/cold spells, head ache, stomach ache (like a void expanding in my belly that couldn't be filled or soothed), anxiety, panic, runny nose, sneezing, and a constant feeling that I can only describe as anguish. It was awful. That being said, talking to you about tramadol the other day reminded me how much I loved it when I first got it. And it got me thinking about maybe giving it another try. Tramadol lasts about 6 hours compared to the 3 I'm getting from oxycodone and tramadol supposedly causes less sedation. Since I'm not actually taking a therapeutic dose of oxycodone and am more or less just taking a maintenance dose to take the edge off, maybe I could just do that with tramadol instead. I think I'll take a 50 mg tonight before bed and see how I get through the night and see how I feel tomorrow. I got my cpap when I was on tramadol, so maybe the switch to oxycodone has made my sleep apnea even worse than it was before and that's why I'm still so tired during the day... maybe if I go back to tramadol, my cpap settings will work the way they're supposed to.

[beady3 in reply to ookla]

All we can do is keep trying the different meds,hope you have luck tonight. Am on 2 tabs 50 mg but weekend was rubbish so took 3 a day ,had 2 today but just got up and took another as leg is playing up so I expect it's 3from now on, xx

[ookla in reply to beady3]

Yeah, that's the way it went with me. Started at one, then it was two. I stopped taking it instead of moving up to 3. Hope you have an uneventful night.

[landman]

I have PD since 2000. I have been on Neupro 8mg for 2 years. Doing very well. I exercise everyday, which I believe is the key to recovery. Tip; when you remove patch use hand cream to remove excess glue, avoid direct sun on patch, & check web site for discount card unless you are on medicare. I also take Azilect and my wonder drug is Amantadine. I use MJ for pain.

BTW; Neupro patches work better if you use them instead of taking them. LOL

Good Health to all.

[gretakmac]

Also on Neupro. I was on ropinorole, 6mg, which is ridiculously high, prescribed by my new neurologist. Reduced it to 1.5 mg and 2 mg patch. Not enough, so now 4mg plus the ropinorole. Hoped to get off the ropinorole completely, but finding this is the best combo for me.

Replace mine at 4 pm every day, but still have a bad hour or two about 8 -9 pm which is not a big deal since I move around enough to deal with it.

I am now keeping old patch on for a while. Definitely find the shoulders and upper arms are the best spot for them, but hard to follow a rotation they recommend. If I use chest, it gets very itchy. Upper thigh does not work for me at all, must like not having any medication at all! Pretty sure same for torso. Fingers crossed that this keeps working. How long have you been on it? Have you augmented on other meds?

[Shoeinthree in reply to gretakmac]

I've been on a Neupro for about 8 months, I had to drop down to one patch as 2 were cause more problems in my arms, but I am also on fentenal (2) patches along with OxyContin and I have good and bad days, it's interesting to see what works for one and doesn't for another and we all have the same thing ,

[Hidden]

Hi Shoeinthree, I've been on @mg Neupro for around 3 years now. I seriously think it saved my life, as I was so desperate for relief that I couldn't see a future for me. I'm so glad it didn't come to that. b It's not 1000% effective (about 905 of the time it is) but no medication is 100% effective. I know this medication is expensive (one doc told me it was costing the health board £&% per 28 days), so I always worry that one day the health board that I am registered with decides that budgets are too tight for them to supply me with it. I don't know what I'd do then, I had sever augmentation with Ropinerole, and I like the fact that iI don't have to take tablets, I can just apply the patch after a shower in the morning and then forget about it. Unless I sunbathe then the direct sun burns it, but that doesn't happen very often here in Scotland!

[Shoeinthree in reply to Hidden]

I'm so happy to hear you found something that helps you out, I do know what the desperate feeling feels like, I was a mess before I started taking meds

[Parmar]

Hi Can anyone who is using these patches explain the most effective way of using those. I mean patching which part of body it is more effective.

PARMAR

[debchau in reply to Parmar]

I put mine between my neck and shoulder it works awesome

[Shoeinthree]

I found the best spot to keep the patches was on my upper back, I didnt last long on the patches

wishing you luck with them

[Radone]

I tried the patch but since it is time released, it did not work for me. I so wished it would have. You also have to keep moving the patch around on your body