Getting off the patch

[Bat3353]

I’ve tried to switch to another medication any I wing up going back today I’m going to get off for good I’m always groggy I’m going to try ropinorole EX 4 mg and at bedtim ropinorole 2mg or 3mg or both let see what happens

[Hidden]

Nooooo, please dont take all that ropinerole or the extended one,. that is waaaaay to much and you will augment. The highest dose recommended is only 1mg. Altho the websites and doctor will still say 4mgs as the highest dose, the RLS experts recommend lower. Why are you wanting off the patch..? and how were you trying to come off it. ?

[Bat3353 in reply to Hidden]

I've been on the patch for years I use 1 4mg patch and 1 1mg patch and at night I take a 3mg ropinorole that helps me fall asleep but I'm always sleepy I'm in the orlando area

[Hidden in reply to Bat3353]

Why are you using all those patches AND the 3mg Ropinerole.> You too are taking too much dopamine. The simple thing is, if you have to take so much to get relief then there is something wrong, it sounds like you have augmented too, and to get relief you have increased the doses and that is the wrong thing to do. They give 3mgs patch as the highest dose for RLS, and they set that dose for a reason, as they do all meds. Then you are adding in 3mgs Ropinerole.!

[Bat3353 in reply to Hidden]

I’ve been on 5mg for years I started with mirapex then that stopped working then I tried the 4mg patch then they added 1mg total 5mg that stopped the rls but at night I couldn’t fall asleep the he added the 3mg ropinorole and that help the same with the 4mg ER ropinorole it takes care of the rls but again can’t fall asleep please help

[Hidden in reply to Bat3353]

I am so sorry, but your doctor has no idea on how to deal with RLS. You are going to WITH your doctors help have to wean off those meds. And that is not a easy process, of course when you try to take less then you are experiencing withdrawals. Your body has got used to all that dopamine. See your doctor tell him/her you need to wean off all those meds but to be done very very slowly, i hope your doctor is willing to let you have a pain med like codeine, but Tramadol is better, the pain med will help with the withdrawals, but you will still find it hard. Lots on here have done the same, and have come through it. I hope one of those members will see this and give you more advice on how they did it,

[Bat3353 in reply to Hidden]

If I use less my rls kicks in

[Joolsg in reply to Bat3353]

Yes it will. That’s part of the withdrawal from dopamine agonists. Unfortunately you won’t get relief until you accept you have been taking way too much DA over the years, you’ve augmented on Mirapex and now you’re augmenting on that high dose of Ropinirole.

Please read everything you can about Augmentation- you have to educate yourself as your doctor is clearly clueless about RLS ( and bordering on negligent). As Dr Early says in the video on the main RLS UK website- adding more Ropinirole is like pouring gasoline on a fire. You’re feeding the beast.

Please listen to all the advice and look up Augmentation and take the first steps to help yourself- reduce slowly and ask Doctor( preferably one who is prepared to read about Augmentation) for meds to help- most of us needed an opioid like tramadol to get through withdrawal.

I hope you manage it and find suitable alternative meds ( pregabalin or opioids) which will control the RLS once you stop the DAs.

[Joolsg]

Listen to Elisse. She has a wealth of knowledge & experience and has given you excellent advice.

[Chester09]

I have been on 1,2now on 3mg patch every now and then if its really bad i will put on an extra 1mg patch but dont know why yiu would use all those patches your useing if its that bad i would use codienne phos with paracetamol with the the 3mg patch instead of all the patches i get a lot of relief with them

[Hidden]

I sense that you’re frustrated. After several years of being on the same thing you get used to it and are loathe to change it. We also grow up learning to trust that our doctors know what they’re doing.

Having said that, though, I agree with Elisse. Your doctor has you on too much medicine (dosage-wise) for RLS.

Will lowering your doses make your RLS worse? Yes, probably so. But....will lowering your dosages help lessen your grogginess? In my experience, definitely! Unless there is something else in your medical history that is making you tired, I will say with certainty that the high dosages are to blame for your grogginess.

[Hidden]

Just to reinforce what's been said. It sounds like you're experiencing "Augmentation" where paradoxically taking more medication makes it worse, not better.

As also said, the way to manage augmentation is to reduce the dose. You have to do this s l o w l y and you may need something else to get you past the withdrawal symptoms.

You will need the cooperation of your doctor with this, e.g. in prescribing you appropriate medications and doses. My GP (primary care practitioner) is very poorly informed about RLS. When I went to see her because of my terrible insomnia and augmentation, she admitted she had no idea what I was talking about. Therefore it would help if you downloaded some authoritative information about RLS and augmentation and took it with you.

Some say take opiates to help with withdrawal, by prescription, not over the counter, they're not strong enough. Some take a benzodiazepine to help with sleeplessness. Clonazepam is favoured for RLS but again, can leave you groggy the next day.

Others may add to this, but it would be best to take the same dose every day to start with and it would seem logical to not use BOTH patches and tablets. I only take tablets, but I believe you can get patches of different strengths. So you can slowly change from a higher strength to the next lower strength after a period of time. Even if you experience withdrawal symptoms, do NOT be tempted to raise the dose again.

I've read various descriptions of how fast folks cut down, some say cut down every week, some ten days and so on. I'm cutting down on a monthly basis

Some people say they cut the patches, this reduces the dose too. Theoretically if you cut SOME patches in two halves, you get half the dose from each half. If you do this, check that it's safe first, some patches cannot be cut it would be dangerous.

It's not going to be easy by all accounts, but it will be of benefit in the longer term.

[restlessstoz in reply to Hidden]

When I was on fentanyl patches years ago and had to stop them, once I got to the lowest dose patch I simply 'obscured' more and more of the patch so that only some was in contact with my skin. I think from memory, I used the backing to the patch. This meant a very controlled and gradual decrease with no withdrawals at all... thankfully. Just an idea to try if you can't cut the patches. Great response by the way... as always Manerva.

Also I think it's important to note that not all people react the same way to anything with RLS and so it's only by trial and error to work out what works for you. I tried oxycodone to withdraw from pramipexole and even 30 mg wasn't doing anything at all. I also started getting dreadful sweats and horrendous anxiety! Very disappointing as I'd persuaded the doctor that this was the best drug to help.

I believe that without a Dr B. on our payroll, our only way for successful support from our GP etc. is to help them get the knowledge that they need to do that and by taking information to them is the way to go. My GP is being very supportive now that 1. he's seen first hand what a severe attack is like, and 2. I've provided him with reams of articles and papers to read. He's also started his own research for me.

Bat3353, do listen to these very experienced people on the forum. I'm very new to this and can testify that they know their stuff. It has helped me enormously.

[Kaarina Administrator]

I added two links on augmentation on one of your threads: healthunlocked.com/rlsuk/po...

Here is another link: rls-uk.org/augmentation-reb...