I have been on 1mg patch each day for over a year. The doctors want me to increase the dosage, but I just can’t. It’s a fine balancing act between my movements being smoother and no more freezing - and terrible ‘waking dreams’ (in which I have acquired injuries), fear of going to sleep and suffering nausea and vomiting. I keep reading that the medics still do not know quite how this medication works either. I feel like stopping it, but then the old problems rear their heads again. I am so tired of this illness, especially in the sense of it not having a clinical diagnosis, everything is ‘let’s try it and see what happens’, no clear treatment or cure, and the repetition of the phrase ‘everyone is different’. I know they are, but is it actually their treatment that has different results??
Hi @Tamsin,
I can understand your frustration and I can see why you’d want to come off the patch altogether. I’d recommend that you speak to your GP again and explain to him/ her about the side affects you’ve been experiencing, before you make an rash decision that may worsen your symptoms. I think you’d really benefit from talking to one of our advisers via our helpline - they have a lot of knowledge on Neupro patches and can advise on alternative options that has worked for others in similar situations to you. Give us a call on 0808 800 0303 or feel free to email us at [email protected].
Best wishes,
Reah
Thank you Reah. I will certainly do that. As it happens, I am seeing my neurologist tomorrow!
Hi,
I have experience of Rotigotine Patches having been on 8mg/24hrs for the past 6 months along with 5 x day 25/100 Co-careldopa taken with 200mg Entacapone tablets with a 50/200 slow release Co-careldopa taken at night.
When I first started on the patches there was an immediate improvement in my freezing, movement, speech, drooling . The past 3 months has seen my condition deteriorate to the level I was at when I started using the patches. My Doctor has recommended I increase the patch dosage by 2mg for 1 month and if no improvement by another 2mg to give a total of 12mg/day. This requires the use of another patch as the biggest size is 8mg. To find room for 2 patches using the Neupro instruction is difficult.
1mg patch seems small compared to my experience. Has anyone else experience of these patches good or otherwise.
Hello Steppy, I have just had an appointment with my consultant and I explained the problems I have been facing with the Rotigotine patches. He was amazed because he said that a patch of 1mg a day is the kind of dose you might give a baby! And he said people generally are on much more. I think I just have a high sensitivity to anything I take. However, when I explained about falling out of bed while asleep, he said this was not due to the patches in his view, but to the illness itself. If it helps to put your mind at rest Steppy, he said the patches are considered an excellent and safe option. I know you cannot cut the patches with scissors (!) but perhaps your doctor can think of another way around the problem? Good luck with it and keep in touch.
Hi Tasmin,
Thank you for your kind words. I will certainly try the additional patches and see how they work and
advise accordingly
Regards falling out of bed I had a bed lever fitted which I have found very useful.
I have been prescribed with Neupro rotigotine 2mg along with the 4 sinemet I take a day.
I am so afraid of the side effects they sound horrendous. I’m not sure whether to give them a go or not although I have actually picked up the prescription.
No harm in giving them a go. The one good thing about patches is that you can take them off!! Tell us how you get on.
Will do Tamsin.
Margs1
I suggest you give the patches a try. The side affects I experience is difficulty sleeping, sometimes skin reaction to the patch and constipation but that is common to all PD sufferers.
Thank you Steppy. I have got the prescription and I am going to wait until my back is better. I pulled a muscle when I had a fit of sneezing, its improving through the day but it is really bad during the night I end up sitting up so dont get much sleep.
The side effects sound horrendous but I suppose all medicines have a list of side effects just in case.
Steppy, out of interest what other medication do you take?
Hi, I’ve been on 8mg Neupro for about 3 yrs, along with a host of other meds. At one stage the Neurologist pushed me up to 16mg, then a year later back down to 8mg (always in stages). Fortunately never had any side effects. It’s all about getting the right level boost of levodopa.
8 years in still battling hard!
Margs1
My medications listed post 3 on 30/Jul/2019
I see you are on a high dose of the patches. I have been prescribed 2mg but I only take 3 co careldopa a day 25/100.
When my pulled muscle heals I will give it a go. I’m not getting much sleep at the moment as although my back is not too bad during the day I cant lay down.
Seem to be feeling sorry for myself at the moment, hopefully that will pass.
I meant to say 4 careldopa a day.
RyderCupplayer
When you were on 8mm plus patches it required 2 patches/day? Where were you putting the patches without using the same area in less than 14days as per Maker’s instructions as I find it difficult to use1/day in particular when I put them on by myself. Its guaranteed I will be in a tremor period!
Any advice or tips for application will be most welcome.
Steppy hi,
I know exactly what you mean!
I try to keep moving them around but its certainly easiest on the tops of thighs and high up on the buttocks.
Over time I’ve developed a way of putting them on by removing it from the outer packaging, then bend the patch partially so that you can pick a tab of the protective clear strip and remove one half. Then holding the other half position and stick down onto your behind. By keeping the fold across the centre of the patch you should be able to pick the second tab and peel back while smoothing the front.
I’ve found they don’t need to be pushed doown to stick, they react best to heat, so once in place just lay your hand over the patch to smooth out.
I’ve certainly wasted a few by not getting them flat and smooth, but once in place they are fine. They will even withstand the local swimming pool without falling off!
One thing, speak tok your pharmacy as you can get 8mg patches, which means half your problems dissapear!
Good luck
RyderCupplayer
I am already on 8mg patches, my Neurologist wants me to increase to 10 then 12mg hence the need for 2 patches as the maximum patch size is 8mg.
Thank you for the tips, I will try tonight. I am impressed they stay on in the swimming pool!
Decided I will start taking my rotigotine patches on Monday. I have just spent a week with my daughter up North and have been so upset as I cant really play with my 14 month old granddaughter. We went to the park and there are all the other grandparents running round, pushing their grandchildren on swings etc. Theres me just standing there as moving about makes me feel funny. I then had the journey back by train, why are crowds now so intimidating? My arms and legs felt like led and by time I got home I was feeling very sorry for myself. I was only diagnosed 17/18 months ago, how do other people with PD manage?
Sorry for the rant but I’m feeling very sorry for myself.