I've had RLS for 25 years, and been on Pramipexole plus Temazepam for 8 years, which generally suppressed the symptons well, although like many fellow sufferers it went in waves. My GP recently told me to stop taking the Temazepam as apparantly it should only be taken for a few weeks at a time (funny, as he reviewed my medication every 6 months). Since stopping the Tem, the affect of the Pramipexole has diminished until I wasn't getting more than 1 to 2 hours broken sleep each night, so GP has switched me to Neupro. Did first week on 1mg, didn't work, so have now increased to 2mg. Wondered if the patches discharge more when first applied, or whether they discharge equally over 24 hours. Any best practice for using the patches would be welcomed. Also lost my job this week, so stress is presumably adding to the problem.
Is there an optimum time of day/night... - Restless Legs Syn...
Hi, i used to change mine in the morning, but i think it really whatever suits you best, my cousin usually changed hers at bedtime, after her bath, you need to find the best time to suit you really
You're in luck! We did a piece on them in a previous RLS UK newsletter so here is a slightly shortened version. In answer to your question, my experience is that they need to be on at least a couple of hours before bedtime. If I put them on later, I can almost guarantee RLS. I suppose I also sit more in the evenings either eating, watching TV, doing paperwork which is more likely to bring on the RLS so I have to be very disciplined and not sit too much or too long and put my patch on earlier. I try to avoid using the computer in the evening but don't always succeed!
I assume you now have the ones which don't need to be in the fridge? If you do have the fridge ones, leave them out for 10 mins or more before applying.
•It is easier to apply the patch after a bath or shower so that there is less chance of it falling off.
•Although not recommended in the leaflet which comes with the patches, some users find that it is better for their RLS if they apply the new patch but do not remove the old one until later. This gives the new one some time to start working.
•Patches can cause itching and cause skin irritation, even if they are placed on a different spot each time. This may be to do with how sensitive or dry the skin is. Some people have found Germoline (antiseptic) cream can help with the irritation and soreness. The manufacturers recommend moisturising the area which doesn't have the patch on so that it is kept in good condition for when it does.
•For some, patches tend to fall off unless secured with something else such as plasters or surgical tape.
•It is trial and error to find which parts of the body are the best for applying the patch to, both in terms of effectiveness, adhesion and skin irritation.
•One man said ‘finding a non-hairy part of the body can be difficult if one is to avoid using the patch on the same part of the body over a 14-day cycle. The manufacturers recommend shaving potential stick-on areas at least 3 days in advance of application, but this is a real hassle, never mind remembering which areas haven't been used during the previous fortnight (I'm thinking of having a numbered map tattooed onto my skin as a reminder!!). Some people find that writing a number on the patch helps them to remember which is the old patch which needs removing a couple of hours later, ie write '1' on the first and '2' on the second, then later remove '1'.
•A month’s supply of patches in the UK costs GP surgeries about £100 which is considerably more than tablets which may explain why some are reluctant to prescribe them unless all other options have been tried.
Hope that helps. Good luck!
Thanks for the detail tiredparent, taking a lot of your advice on board. To answer your points: yes, i'm on the patches that don't need to be in the fridge; and I'm not a hairy person so that's not a problem! Amazed at the price of the patches, out of interest, how does that compare to something like pramipexole?. I'm using 2 of the 1mg patches now, have been on them for nearly a week and I'm still suffering badly. I can feel some improvement for the first hour or so in bed, then I wake up and am all over the place for the rest of the night at the moment. Difficult for me to work out how much of this is affected by my current state of mind having just lost my job, I'm sure that doesn't help and that will improve over time. Can anyone tell me how long it normally takes for the Neupro patches to work effectively? Are most of you guys on the maximum dose 3mg patches? Ade
Non hairy part of the body is the inside of your upper arm.
I've had patches before but not for RLS.
I am a newcomer to Neupro (4 days) and already I am seeing differences in my response. I have attributed these differences to placement area. Your recommendation above is interesting, as I did have a better response when placed as you recommended. I am GUESSING that the key is to have the patch in proximity to a blood vessel that is near the surface (in this case, the cephalic and basilic veins).
I used to put mine on when i was using them, at 6-00 evening time, for me i found they needed 4-5 hours to kick in and get me sleepy. But as others have said, it is finding the best time which works for you. I also found they worked better for me on my upper arms. Is the 2mg patch working..??
Hi Elisse. I'm trying about the same time in the evening now, and leaving the old ones on for an hour or so afterwards as suggested elsewhere. Not really working yet, but as above my state of mind after redundancy probably isn't helping. How long did it take for them to become effective for you? Ade
Hi Ade, i might not be the best to give a good answer as when i use any meds, including when i tried the patch, all worked for me straight away, as in the first night. I am sensitive to the meds so i guess my body reacts straight away. Stress from redundancy could be a factor for you, or you might have to give 3mg patch a go, see if that works...ask your doctor first. Or it might just mean the patch isnt going to work for you...
I am on mirapex and the fentanyl patch 25mg. My doctor told me it releases evenly over the time period I wear it which is 1 -25 mg patch every 78 hours. I was told to keep consistant becausemfor example if I left it on an extra ten hours and the release is gone it will take awhile to get back into my system
So sorry about your job loss.
I am starting neupro tomorrow can anyone please ttell me what results they've had with it and which of the many side effects.
Thx Bella, job loss is temporary, RLS lasts a lot longer though, so I know which one will affect me more in the long run. Let me know how the Neupro goes for you, good luck. Not really doing much for me at the moment. I stared on 1mg patch for 7 days, then increased to 2 patches which has been nearly a week now.
I only started yesterday at 10 a.m. - during the day I did feel some very light pain and only lasted about 30 minutes - however, later in the evening I had a regular spell which was only 50% of the usual pain but lasted about 2 hours. I'm on 2 mg. What, if any, side effects have you endured.
I'm on the 3mg patches as the 2mg were not enough for me. Just curious why you're on 2 patches? That is presumably double the cost, double the wear and tear on the skin and if you get it, double the skin irritation. I'd say my only side effect is the occasional skin irritation which seems to be in no pattern so no idea why I get it some times and not others. Sorry - no idea about cost of pramipexole but clearly a lot less Neupro patches.
Certainly stress, anxiety and being over-tired effect my RLS considerably. I try not to sit down too much in the eve as that makes a big difference. I used to fight the RLS but now realise that the best technique for me is to just accept that my sleep patterns will be different and rather than lie in bed kicking and getting angry and frustrated, I get up and do something positive like ironing or making my kids packed lunches of the next day. I also sometimes lie on the bed - not under the covers so that my legs are kept cool and only pull the sheets up when I'm cold. I sometimes have a floor fan aimed at my legs if it is hot and just switch it off just before I drop off to sleep. With me, it is about preventing the RLS coming on as once it is here, it is much harder to get rid of!
Some doctors will tell you that doing chores at night keeps
us on that sleep/ awake pattern. We train ourselves to work
at night and sleep in the daytime. (made me mad at first)
I thought like you did and did the same.. It's 2:31am... I have
zero RLS but I am awake running the washer, dryer and
I have some of tomorrows dinner in the smoker.. Nice HEY?
Once the rls starts, I'm going to keep going at it for a good 7 hours.
It stops briefly in the morning and then returns no later than 4pm.
I'm taking more medicines than I have been prescribed. I have
to call and tell my doctor that I am doing that again. That's not
going to fly with him or my rheumatoid doctor.
I personally wouldn't touch the patches with a 10 foot barge pole ... i was on them use to change it same time every night great for 2 weeks no RLS was bliss to be able to sleep .... then all hell broke loose RLS went on a rampage , really hope it works for you and many others that use it there's some good advice on here , sorry you lost your job was it through RLS if you don't mind me asking , Good luck with the patches oh and don't forget to keep them in the fridge .. not sure if anyones said but when you have a bath with it on it'll sting lol , Xx
Gypsy49, I wrote your tip down because I need to switch.
What happened that you experienced rls again? Is that drug
subject to augmentation as well? I was banking on it not
like any dopamine agonists drugs they can cause augmentation in some folk some affect folk some don't one might affect you another might not for me they all do , from what i've read they've changed the patches so you don't have put them in fridge that must have happened in the last 9 months since i had them, My experience was RLS went nuts after 2 weeks didn't sleep for 5 nights solid and RLS was the worst i could imagine possible whole body felt like it was going to explode , i know everyones different and it's all trial and error with us all what works for one doesn't another everythings worth a try ,
Wow.. that's severe!! I've been there except it's never been the entire body. I'm glad that's behind you. It's another thing
to consider for me.. It's time to make a new decision - I'm having break through again.
The Neupro patches have been changed so they no longer have to be stored in the fridge which makes life easier. My patches have made a massive difference to my life so hope they work for others too
Tiredparent, do you mean in the UK aswell now, that the patches dont have to be kept in the fridge. ?? That is great news if so...
My patches have just changed to the non-fridge variety. Curiously they seem more efficient.
Anyone want to buy a little used 12/240 volt mini fridge. LOL
Oh ok, thanks for letting me know, not that i am using them at the moment, i do still have some left overs in the fridge tho...lol. Sorry no takers from me on the mini fridge.
yes, it is, i was told last time i got some, around 4 months ago
Just to say, yes the Neupro Patch is just as bad for augmentation as all the other dopamine agonists. I loved them when i was on them, the only med that gave me the lest side effects. Just that i reached the 3mg one and then i started getting rebound really badly so stopped using them, even tho i was sleeping well.
Thanks Elisse. I have it on my list to discuss with my doctors.
Stress is the worst for RLS , So sorry to hear you lost your job, I find when I wake in the morning is the best time for me to change the patch.
I hope this week is better for you
I change my patch (2mg) at around 6pm each evening, but I leave the previous one on until I wake the next morning. This way I seem to have a better transition from one to the next. I used to change them in the mornings and also take the previous one off immediately - I then got severe RLS until the new one kicked in. The patches have changed my life. I do of course get bad days where the RLS rears it's ugly head no matter what I do, but compared to what it used to be like this is something I'm prepared to put up with. Are you saying that in the UK the patches don't need to be refrigerated? I have patches from somewhere abroad, they must have been the latest batch that my Doc has acquired. I can't understand the writing on the package and the label that has been stuck over it doesn't mention storing in the fridge.