The patch for rls: I am on 2 mg patch... - Restless Legs Syn...

Restless Legs Syndrome

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The patch for rls

beady3 profile image
54 Replies

I am on 2 mg patch been on it about 9 months,things not to bad but have been having lots of bad nights and evenings wonder if I should go to 3mg ,is anyone else on 3 mg,thanks for any replys

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beady3 profile image
beady3
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54 Replies
moonhunt18 profile image
moonhunt18

I'm new here. What is the patch? Ropinirole?

beady3 profile image
beady3 in reply tomoonhunt18

Sorry it's also called Rotigotine it's a dopamine

FLAME43 profile image
FLAME43 in reply tobeady3

bEADY IS IT AVAILABLE THROUGH YOUR DOCTOR

beady3 profile image
beady3 in reply toFLAME43

Flame 43 the answer is yes

FLAME43 profile image
FLAME43 in reply tobeady3

thank you Beady3

nightdancer profile image
nightdancer in reply tomoonhunt18

The brand name is Neupro for the patch.

99selkies profile image
99selkies

I'm so glad you asked this question. I am on the 1mg patch. Have only been on it 4 weeks. Moved from 2 years of Ropinirole which had gone into bad augmentation. It's working sort of. Has taken away the daytime bouts of RLS but I'm still getting the odd bad night. Last night in desperation I took 1 of my Ropinirole as they always made me sleepy, And sure enough it did. Is there a problem with taking both drugs at the same time?

I would only be taking the Ropinirole as a last resort occasionally to get to sleep

in reply to99selkies

Its not advisable to be taking to dopamine meds together, as you are flooding your brain with ALOT of dopamine and that causes augmentation. I see you have already gone through augmentation. Also, when augmenting on one dopamine med then its most likely you will augment on another.

99selkies profile image
99selkies in reply to

Thank you

FLAME43 profile image
FLAME43 in reply to

PLEASE EXPLAIN AUGMENTATION

in reply toFLAME43

Augmentation. Its when you are taking a dopamine med and after a while you find you need to up the dose because the med is not working as well. Your symptoms start earlier and become worse and your sleep at night is not as good. The med is making your RLS worse, rather than giving you relief. Doctor's will increase the dosage and everything is fine again for a while then its back to your symptoms starting to become worse again. That is augmentation.

FLAME43 profile image
FLAME43 in reply to

thank you so much, i do believe that is happening to me, so i stayed on my feet until now 23 h 00 in UK, but it is a long day and i am absolutely bushed, i am 73 so to stay moving is not always easy, thank you once again. If you have any advice for me i would much appreciate it

in reply toFLAME43

Flame43 Kaarina has posted a good link for you about augmentation. Can i ask you what is your dose of the dopamine med you are taking and what med is it. How long you have been on it. Are you taking any other medications for any other ailment you have, including any OTC meds.

FLAME43 profile image
FLAME43 in reply to

I am on prempexola 6 a day 1.8, pravastatin 1 at night 10mg, lisiniprol 3/day 20mg, amitriptyline 10mg one at night, indapamide 2.5 mg 1/day, metformin 500mg 1/day

i have co-dydramol tablets which i onloy take when in pain, but never more than 2 in the same day

nightdancer profile image
nightdancer in reply toFLAME43

HI, Flame, I have to agree with Elisse here. Your dopamine med, pramipexole, the dose is way over the recommended therapeutic dose for RLS. Also, the amitriptyline is a tricyclic antidepressant, and can cancel out any good any other med might do for you. I also can be pretty certain that you are augmenting on the Pramipexole, and Amitriptyline is tops on the "no no" list for people with RLS. For 99.9% of us,, it will set off RLS like clockwork. For people without RLS it is an effective med to help induce sleep and a good antidepressant. For people WITH RLS, it can be pure poison, noting there are a few exceptions/. But the combination of your very high dose of the dopamine med and the Amitriptyline is not doing you any good. Even 10 little mgs of that last one can set people off. It is the one med that literally made me suicidal many many years ago, because it had me bouncing off the ceiling. if you are prescribed that one for depression, then there are other ones that are safer to use, and of course you must discuss it with your doctor. Also, as a little warning, never stop taking that or a dopamine med cold turkey, without a helpful med to take it's place, which is usually an opiate pain med. That is the way the international RLS experts advise, the researchers, and the RLS doctors who treat many people with great success. Please do read the link Kaarina put up on augmentation. :) it can be a lot to take in, but it is something a lot of doctors have no idea about, sadly.

FLAME43 profile image
FLAME43 in reply tonightdancer

oh my word Nightdancer, thank you so much for this incredible post. It has opened my eyes to saucer point. You are so gracious to give me this concise information. What you have described is absolutely happening to me, I will have to take this up with my doctor, but i am sorry to say, she is a lovely doctor, but not well informed about the RLS syndrome. . I have read the link, and i am alarmed at the parallel concerning me., though have not completed it, and will do this asap. If there is anything i can take to my doctor regarding my problem i will need to take it to her, as, obviously, having prescribed the meds, she would not be aware of the effects. thank you once again

.

in reply toFLAME43

Flame look at this website its the RLS-UK one and lists what can make RLS worse like the anti-d you are on. rls-uk.org if you can print that off and take it with you your doctor will be aware on what not to prescribe you. The link that Kaarina posted for you also if you can print that off and take with you, your doctor will see that increasing a dopamine med is not the best thing to do. Your doctor needs to know as Nightdancer has said, that you should not go cold turkey when getting off a med, to come off the Pramipexole you will need a strong pain med like tramadol, it will help with the withdrawals from the Pramipexole and its what most people use when having to get off their dopamine med. Lots of members on here have had to do this and found tramadol has helped.

FLAME43 profile image
FLAME43 in reply to

You are an earth angel i will certainly do that, once again thank you for your amazing caring

in reply toFLAME43

We are here to help if we can. Also i should have said, you need to wean down very very slowly off the Pramipexole. Good luck, and let us know how you get on.

FLAME43 profile image
FLAME43 in reply to

I started yesterday to cut down on the pexola, have had none as yet adn its going ok, i am however a person who believes in Christ and His healing power, so i am praying a lot, i know it seems stage but i believe i am getting by on this hope, so it is only another aspect of what i will be doing to get better, along with whatever medcal treatment going forward. You have been a light for me in this terrible malady

nightdancer profile image
nightdancer in reply toFLAME43

you are very welcome! :)

Kaarina profile image
KaarinaAdministrator in reply toFLAME43

You may find this link helpful Flame43, to learn more about augmentation

sleepreviewmag.com/2015/02/...

nightdancer profile image
nightdancer in reply to99selkies

With the dopamine meds, if you have augmented already on one of them, then it is likely you will augment on the other ones. Some can use the patch better with less issues, but as Elisse said, flooding your brain with dopamine is going to do a number on you. IN RLS, we have enough dopamine, it just is blocked by the neuroreceptors and cannot cross the brain/blood barrier. Whereas in Parkinson's, these meds were first used for that, and in Parkinson's there is a distinct lack of dopamine. So that is why the doses are higher for PD than in RLS. :)

badia1 profile image
badia1

i'm on 6mg the last 3 years with a low dose of Lyrica 2x/day. no problems.

6mgs is a high dose, higher than what is recommended for RLS. Should only be 3mgs. You could go a few more years yet with no problems. but augmentation will probably catch you up eventually.

Izzybelle22 profile image
Izzybelle22 in reply to

Elisse, I think the maximum dosage for ropinirole is actually 4 mgs. At least that is what the Physician's Manual says. Believe me, if I could get away with taking more than the 4mg/day that I currently am, I would do it. By any chance are you a member of the RLS Foundation?

nightdancer profile image
nightdancer in reply toIzzybelle22

4 mgs used to be the highest recommended therapeutic dose. Not so any more. The longer the Requip and other dopamine meds have been used for RLS the experts have learned after a few years, the highest recommended dose is 2 mgs, preferably 1 mg. See the link that kaarina put up about augmentation. 4 mgs is the old dose, it was changed in 2014 by the International RLS Study Group, and also the RLS center at Johns Hopkins, where several studies are underway in the US, plus RLS experts with active practices and also researchers. 4 mgs is the old high dose.

Izzybelle22 profile image
Izzybelle22 in reply tonightdancer

Hi nightdancer. Are you talking about the patch or oral medication?

in reply toIzzybelle22

Nightdancer is talking about Requip. As i was too, in my comment further down this thread.

Izzybelle22 profile image
Izzybelle22 in reply to

Yes, I know that nightdancer is talking about Requip (ropinirole) but he/she used the term "patch" in conjunction with ropinirole in an earlier response. Is there a ropinirole patch? I don't think so. The only "patch" I am aware of is the Neupro patch whose generic name is rotigotine, and it is often termed the rotigotine transdermal system.

in reply toIzzybelle22

No there isnt a Ropinerole patch.

Beady, not sure what to tell you, 3mgs is the highest dose for the patch which is allowed. But i would discuss it with your doctor. :)

Izzybelle22 profile image
Izzybelle22 in reply to

Elisse, my apologies. I thought you were talking about the ropinirole pill and not the patch. Sorry :(

P.S. You really have to read EVERYTHING on here before you reply. I hang my head in embarrassment.

in reply toIzzybelle22

I was frowning at your reply, and was about to answer when i scrolled down more and saw your apology. Its easily done. :) BUT, i will add that 4mgs Ropinerole is now considered to high, yes its what is said in all docs manual and all websites. I am going by what RLS experts are now recommending that 1mg ----2mgs at a push is now best to take. This is because of augmentation which is a BIG thing on every forum and every support group. Every day not just myself but others are having to help people out who are augmenting. Augmentation can happen even on lower doses, but its better to keep the dose of any dopamine med as low as possible.

If you are finding you are needing more to get relief then that is a sign of augmentation. And no i am not a member of the RLS Foundation, just some one who tried to keep up with the latest information about RLS and passes it on to others. :)

jefro profile image
jefro

I started 2mg patch over 3 years ago but it didn't help much so I put 2 patches on at once and it was like I was cured of RLS, I hadn't felt that way for years, so I told my GP who checked with a neurologist who sanctioned the 4mg dose. When RLS does break through in the evening (I am low on iron) I use codeine and tramadol which stops the RLS.

brickscrawling profile image
brickscrawling

What kind of patch? I have severe rls and is making me crazy. Currently on pramiproxle but it makes me feel out of it.

brickscrawling profile image
brickscrawling in reply tobrickscrawling

New on here, Nm saw all the replies. Thanks

FLAME43 profile image
FLAME43 in reply tobrickscrawling

SAME HERE, LOOKING FORWARD TO AN ANSWER

nightdancer profile image
nightdancer in reply tobrickscrawling

scroll up. They are talking about the Neupro patch, Rotigotine is the generic. It is a dopamine med, just in patch form, so the same kind of med as Pramipexole, "brickscrawling" :)

FLAME43 profile image
FLAME43

I HAVE NEVER HEARD OF THE PATCH, WHAT ARE THEY

beady3 profile image
beady3 in reply toFLAME43

If you look at the top of this list you will see about the patch ,and if you google it that will tell you all about it

The patch is called Neupro Patch, put that in google.

Whats with all the capitals, people will think you are shouting at them.

nightdancer profile image
nightdancer in reply to

The caps are a bit much. It is usually good internet etiquette not to type all in caps. :)

martino profile image
martino

I am only on 1mg. I have used it before but I think it caused rebound and I think this is happening again. As Elisse has said it seems 3mg is the usual max so where would you go next. I am seeing the neurologist tomorrow and am not sure what will happen. I don't want to stop the patch as it has helped I think but I will just have to wait and see. I keep a diary of symptoms and treatments and last time the rebound got earlier

maddymac66 profile image
maddymac66

I too am on the 2mg rotigotine patch but feel that it doesn't help my R.L because too many nights I spend walking the floor in agony.I was on3mg but reduced the dose myself because they weren't helping me and I didn't see the sense of putting drugs into my body when they didn't relieve my discomfort. I feel that augmentation has set in and I would like to come off these Dopamine Agonists altogether but don't know how to do this without too much distress. Has anyone out there done this successfully if so how ? AND WHAT HELPED YOU COPE INITIALLY.I would appreciate any advice particularly from Nightdancer who appears to be very Knowledgeable about RLS.

I am new to this site and would value any advice given.

Pippins2 profile image
Pippins2 in reply tomaddymac66

Hi Maddymac, welcome to the group. I have sent a message to Nightdancer for you. She is on a different time zone to me but with see it eventually

Pippins2 x

maddymac66 profile image
maddymac66

Hi Pippins2 thank you. I stopped putting on the patch ROTIGOTINE 2MG on Thurs . and didn't sleep all night consequently I was in so much distress on Fri both day and night , it was hell ,so my great idea of giving up this medication (because of Augmentation) went to the wall and I finished up putting the patch on again about midnight and taking a sleeping tablet as well Today Sat.I feel such relief but where do I go from here?

Pippins2 profile image
Pippins2 in reply tomaddymac66

Maddy first of all you need to get your doctor on board because you need a back up med to help you cope with the withdrawals. As you have discovered suddenly stopping any dopamine agonists med (in your case the patch )causes a marked increase in the severity of your RLS. Many find Tramadol very helpful whilst withdrawing and some stay on it as their regular RLS treatment. Also you could start on Gabapentin or Pregablin so it can be gradually getting into your system ready for when your off the patch

I would go slowly maybe dropping by just half a patch every couple of weeks or even every month. Get started on Pregablin or Gabapentin and get Tramadol or at the very least Codeine to help you

How long have you been on 2mg? If you recently dropped from 3mg then stick with the 2mg for couple more weeks

Get your GP to check your ferratin iron levels, it needs to be over 50 preferably over 70 which is much higher than that of someone who does not have RLS

Keep in touch let us know how you go on

Pipps x

maddymac66 profile image
maddymac66 in reply toPippins2

Hi Pippins, your advice seems very sensible and I will take it on board. The sleeping tablets are Z0piclone 7.5 mg of which I only take half a tablet when I am desperate, about twice or 3times a week at most because I'm frightened of becoming addicted. It's so good to communicate with people like you who understand what a devastating ailment RLS can be. I would liken it to torture when it's at its worst. I don't know anyone personally who has RLS so it is difficult for my friends. to understand how debilitated I feel after walking the floor all night

I'VE been on the patches 2mg for 3years Rotigotine. Thanks again for your advice

I'll keep in touch

Maddy

P.S.how does Pregablin or Gabapentin differ from Rotigotine are they less addictive or more effective?

Pippins2 profile image
Pippins2 in reply tomaddymac66

Gabapentin and Pregablin work in a different way to the Dopamine Agonists. They belong to a group of meds called anticonvulsants, they do not cause augmentation. I also have Ziplicone, I am on the 1mg patch and I take a break from it every 4 months in order to try to avoid augmentation and I use Ziplicone and Clonazepam to help me get through the break (I try to keep off the patch for 3 weeks ).I have back pain so I am able to get strong painkillers prescribed too x

I have sent you a private message top x

maddymac66 profile image
maddymac66 in reply toPippins2

THANKS PIPPINS I APPRECIATE YOUR ADVICE AND WILL KEEP YOU INFORMED

maddymac

Pippins2 profile image
Pippins2

Maddy which sleeping pill are you on? Do you take any medications for anything else as many can worsen RLS?

Pampinky profile image
Pampinky

I found 3mg works for me too.

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