Rotigotine patch : Hi everyone, i... - Restless Legs Syn...

Restless Legs Syndrome

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Rotigotine patch

RLSAndy profile image
48 Replies

Hi everyone, i think i know the answer to this but care for opinions…

My Dr after ive complained about so many different things will not give me Codeine to help me get off Ropinirole and wants me to go onto the Rotigotine patch. He tells me that the patch is the equivalent to 1-1.5mg ropinirole which to mean seems insane as im down from 4 to .5. His logic is it causes less augmentation but only by 2% less in what ever study.

I feel im so close to getting off it and can probably source enough codeine to get me clear of these satanic DAs that this would be a plaster to a problem and a step sideways if bit backwards with no route off the patch as it dosent come in anything smaller dose.

Ive posted a few times but for anyone who hasnt seen my posts im also on 450 pregabalin and have a clear path now to hopefully see the pregabalin work and get some normality back to my life.

I welcome any comments and thoughts.

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RLSAndy profile image
RLSAndy
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48 Replies
SueJohnson profile image
SueJohnson

Definitely stay on the ropinirole. He is correct that it equals 1.5 mg of ropinirole. You can cut it but that is a pain and it is debatable that it causes even 2% less augmentation.

RLSAndy profile image
RLSAndy in reply toSueJohnson

I guessed as much, i think i have to just keep slowly coming down on the ropinirole and get rid, he is obsessed with ill have to be on DAs forever, makes me sick!!

Madlegs1 profile image
Madlegs1

Ditch that doc!😝

Madlegs1 profile image
Madlegs1 in reply toMadlegs1

Seriously you have done great to get to this point.

You are correct to not want to go backwards.

Would it be possible to get OTC codeine in some form? I think it comes as cough suppressants, but be careful it isn't combined with an RLS triggering med.

All the very best.

RLSAndy profile image
RLSAndy in reply toMadlegs1

I think i can get enough codeine to take me down the last .5 and then a couple weeks overlap 🤞🏻

RLSAndy profile image
RLSAndy in reply toMadlegs1

Oh lord he would be taken to sea and lost if i could trust me he is pathetic, instead of referring me to a specialist he just keeps going round in circles thank god i found this place.

Madlegs1 profile image
Madlegs1 in reply toRLSAndy

I see codeine is widely available in UK OTC.Look for a paracetamol med with codeine. Avoid the ones with ibuprofen.

You'll do ok!👍

SueJohnson profile image
SueJohnson in reply toMadlegs1

My laugh for the day.😀 and put him in a ditch!

Joolsg profile image
Joolsg

Aaaaaaaaghhhh!I'm so sick of UK doctors saying the patch causes less augmentation.

Boll##£%

The one study on this was flawed. It was backed by big pharma. It refers to a 2011 study ( before scale of augmentation known) and a 2017 study by Claudia Trenkwalder. She now speaks out against ALL DAs. See the BBC Reels video on RLS by Howard Timberlake. She tells everybody to avoid the dopaminergic pathway.

Run! Do not take it.

Every person on here who was told the lie about Rotigitone has quickly experienced augmentation and the patch is even more difficult to get off than Ropinirole.

I honestly think you should challenge him and demand his evidence about 'less augmentation.'

Refer him to Dr Andy Berkowski's website where Andy talks about Rotigitone and why it's worse than Ropinirole. Andy Berkowski sees thousands of RLS patients every year and sees the scale of augmentation in REAL time, not as a result of old studies.

Stay off the poison.

You are doing really well. Keep reducing. Demand a referral to a neurologist to get a low dose opioid to get off the last of the Ropinirole.

RLSAndy profile image
RLSAndy in reply toJoolsg

I guessed this was the case, im learning a lot about RLS and this idiot sits there telling me things i know is BS. Id love to find some documents/studies to show him and prove him wrong but i fear it would fall on deff ears and my biggest battle is to try to get better. The worst thing about all of this is he knows Codeine is working for me yet still won’t prescribe it 😡

What upsets me is how many sheep will simply listen to these people because they are Drs and live in hell, unfortunately the days of them being right are long gone, we are alone (not just with RLS) and HAVE to do our own research.

Joolsg profile image
Joolsg in reply toRLSAndy

I have nightmares about it. All those people who trust what their GP tells them. We have elderly patients who believe their doctors over the advice on here.And who can blame them? Who would believe that a bunch of patients would know more about the latest research and treatment than a qualified doctor?

We had a woman 4 years ago who suffered severe gambling and augmentation on Ropinirole. We told her to get off it slowly. She disappeared. She came back earlier this year, still gambling, still suffering.

When we asked why she hadn't listened to us, she replied, understandably, that she believed a top neurologist over us. And as she ignored our advice that Ropinirole had caused the gambling, she can't take legal action against him. Negligence cases have to be brought within 3 years of knowledge that Ropinirole causes gambling.

The suffering will continue until patients realise their doctors aren't taught anything about RLS.

Sigh...

RLSAndy profile image
RLSAndy in reply toJoolsg

It’s horrific but unfortunately we are taught that the government, police and Drs are gospel and cant do no wrong, im glad ive always been a rebel and now passionate about helping spread the truth from my on going learning and hopefully stability when off the vile drugs.

Joolsg profile image
Joolsg in reply toRLSAndy

When you're off the poison, you can join the cause and the fight by RLS-UK to get RLS taught to GPs and dopamine agonists relegated to end of life scenarios and iron infusions, methadone & Buprenorphine licensed for RLS.

RLSAndy profile image
RLSAndy in reply toJoolsg

I 100% will and trust me am giving my Drs hell i have huge complaints going on, left them bad reviews and have friends in the NHS helping me take it further the fact that, and i told the idiot this yesterday had he told me about augmentation and how addictive/hard to get off DAs is/was id never in my wildest dreams have started them.

Rameau profile image
Rameau in reply toJoolsg

The Howard Timberlake film is probably only available to view in the UK: bbc.co.uk/reel/video/p0bvy1...

DicCarlson profile image
DicCarlson in reply toRameau

I'm in US and it worked! Great video!

Joolsg profile image
Joolsg in reply toRameau

It's on YouTube so should be available to watch worldwide.youtu.be/hnTKtp5PZGo?si=SJ4...

LotteM profile image
LotteM in reply toJoolsg

Never saw that one. Quite a good one. Although it could do with some updates. Not only about the recently published genetic research (from 23 to now 161 identified gene variants). But also by replacing some images of people awake in bed (I can’t during an attack!) with images/reels of people violently shaking their legs. Or, when sitting, also moving their legs constantly. You all know what I mean!

Joolsg profile image
Joolsg in reply toLotteM

There's a new film commissioned by RLS-UK coming out soon.But no shots of people struggling in bed - 😕

Jrskyhook32 profile image
Jrskyhook32 in reply toJoolsg

Yeah well Dr B has told me the same tbing about ropinirol and the patch. Many Drs ba e told me this. These DAs are evil. We have been misdiagnosed, poorly treated, and loaded up with the worst that western medicine bas to offer and told that the doctors would hold our hands throughout the ugly process. Only to be dumped when you needed the doctor the most. Sorry for the bitterness bht thats all Ive gotten from most mds. You all have saved me. You have been my godsend and mysaviors. Thank you

LotteM profile image
LotteM

Hi Andy, I second the others, that is not the point. Just want to offer an option if things get too difficult when reducing the ropinirole further and codeine doesn’t work well enough or you cannot source enough without overstepping the paracetamol limit.

There is kratom. It is illegal in the UK, but you can source it from The Netherlands. Several people have done so, including me (although I am in The Netherlands). It will be labeled as tea or dye, I think. Kratom works on the opioid receptors. Especially the red variants have a painkilling and sedative effect. And you can start with far lower doses than recommended. I used 1/4 to 1/2 teaspoon. The only negative side is that it last only 4 (-6) h, although I found that when I took several doses during the day the effect remained longer.

And of course there is cannabis, but I have insufficient experience with it.

Hopefully you won’t need either of these. It already may help to know that something a little stronger is available.

Madlegs1 profile image
Madlegs1 in reply toLotteM

Good suggestion , Lotte.

Andy-- if you have younger people in your life, they may have the energy and nous to source what Lotte is suggesting.

I'm 78 and would be scared as *"€^¢$ to start looking for them. But great idea.

RLSAndy profile image
RLSAndy

I am able to get pretty much anything of that nature really if i needed it so i will bare it in mind thank you.

Ive tried cannabis as in RSO oil and lighter versions and it just dosent work for me, ive smoked weed recreational from time to time at parties etc and dont mind the high then but for pain relief i cant stand the high that comes with the sedation so dont use it.

Night two of .5 now and not to bad at all. The Dr has given me 10mg Amitriptyline as this whole ordeal has made my anxiety come back and they have a mild sedative effect, he says (eye roll lol) so i took that then codeine later in the night and my sleep was far from perfect but it will do.

Ill keep reporting back as the dose goes down im aiming to be clear in six weeks!

DesertOasis profile image
DesertOasis in reply toRLSAndy

Palomino is right, the Ami is known to worsen symptoms of RLS. Try changing the timing of your iron as Baz did:

Pregabalin withdrawal

Baz33 profile image 4 days ago•23 Replies

Hello ,I'm on week 6 of reducing pregablin, 25mg every 2 weeks ...now at 225mg The only thing reducing symptoms are 4 x iron tablets just before bed, this knocks me out ...is this OK?

Thankyou .

Joolsg profile image
Joolsg in reply toRLSAndy

Amitriptyline will send the RLS through the roof.Basis RLS teaching.

But sadly the doctor hasn't had any teaching!

All anti depressants will worsen RLS.

For anxiety, pregabalin or a small dose of benzodiazepenes are safer for RLS.

SueJohnson profile image
SueJohnson in reply toRLSAndy

I agree with Joolsg on the Amitriptyline. It make RLS worse for most. A safe one for anxiety is buspar (Buspirone) although it will take a little while to work.

Palamino profile image
Palamino

Hi I'm sure the others will tell you but Amiltryptine can make Rls worse . Also I have some kratom I got it a few years ago but couldn't stand the taste . I don't known if it has a shelf life but your welcome to it I'm in UK

Boofoo71 profile image
Boofoo71

Please read my posts Andy. Don't use the patch....you're to close to coming off it completely.

RLSAndy profile image
RLSAndy

hey - I hadnt thought of that, have you or has anyone any more info on Amitriptyline and its effects on RLS?

Joolsg profile image
Joolsg in reply toRLSAndy

Do NOT take the Amitriptyline.It will make the RLS much worse. It's listed on every RLS help site as a med to avoid.

Ask your GP to read RLS-UK website and look at NICE guidance.

As you're struggling, do consider using kratom for the last stage.

Take a teaspoon at night. Mix with orange juice as it tastes foul.

It will stop the RLS for around 4 hours and let you sleep.

kraatje.eu/

Get red vein borneo. It comes as Moringa herbal tea. Illegal in UK, but, needs must.

RLSAndy profile image
RLSAndy in reply toJoolsg

I cant find anything around it on the site but i have bad brain fog atm. Do you have a direct link to the info at all please id love to send it to the Dr

Joolsg profile image
Joolsg in reply toRLSAndy

rls-uk.org/medical-treatments

Scroll down to Medications to avoid.

It's listed with all the other anti depressants.

GPs are routinely taught that Amitriptyline stops nerve pain. But RLS is NOT nerve pain.

The NICE and NHS guidance talk about avoiding trigger meds but don't list them.

RLSAndy profile image
RLSAndy in reply toJoolsg

Thank you!

To make it worse i have just had a message from a friend to tell me she has got inside info that my referral to a clinic recommended by you or someone on here in my city has not even been received and im so pissed!

Deesee profile image
Deesee in reply toRLSAndy

I’m another who says stay away from Neupro patch. I went from ropinirole to Neupro and it took me a long time to get off that patch. I ended up cutting it into quarters to decrease, something my doctor never heard of, and kind of doubted it would work. I was on 10 mg of hydrocodone when getting off the patch, along with 1800 mg gabapentin. I also vaped cannabis at the very end. Presently I take 400 mg Pregabalin to manage my RLS, and sometimes cannabis to get to sleep, which is mostly good old insomnia. I don’t need anything else. RLS is manageable now compared to years of Neupro. You’re just about there! Congrats to you!

RLSAndy profile image
RLSAndy in reply toDeesee

I just cant wait to get off the DAs and get some normality back when im only on pregabalin i just worry that may not work either 😢

Joolsg profile image
Joolsg in reply toRLSAndy

rlsfoundation.blogspot.com/...

Another useful article to send to GP.

Only trazodone and Bupropion are safe to use for depression in RLS.

Your anxiety would be better treated with a low dose of pregabalin or diazepam.

RLSAndy profile image
RLSAndy in reply toJoolsg

I am on 450 pregabalin already. My anxiety is caused by him 🤣☠️🙃

Joolsg profile image
Joolsg in reply toRLSAndy

Yep. Know how you feel. My old GP watched me sobbing and begging for an opioid after 4 days of zero sleep and said. ' We all get aches & pains as we age. Just drink a glass of milk before bed'.She was lucky I was too weak to attavk her!

RLSAndy profile image
RLSAndy in reply toJoolsg

For god sake they make me sick

SueJohnson profile image
SueJohnson in reply toRLSAndy

My laugh for the day, although it is not funny for you. "My anxiety is caused by him"

Joolsg profile image
Joolsg in reply toRLSAndy

cks.nice.org.uk/topics/rest...

Under CAUSES on the NICE guidance you will find the above page which specifically mentions anti depressants.

NICE guidance isn't easy to navigate and you only find that page by clicking on the highlighted text saying 'causes'.

NICE refer to an article by Guy Leschziner and it lists anti depressants, including tricyclical anti depressants ( Amitriptyline) as causes of RLS.

HipHop1972 profile image
HipHop1972

Hi RLS Andy, if you want a medication that contains high Codeine content and is available over the counter in UK, try Solpadeine MAX soluble, it also contains Paracetamol and Caffeine. I have been taking on a daily basis to see me through when I’d come off Ropinirole. You will be given a short lecture by the pharmacy about only using for 3 days but I’ve been on it for months. It is addictive and causes constipation and stomach issues when you stop it dead but if yyou’resensible and monitor yourself it should help you get through.

Best wishes HipHop1962

RLSAndy profile image
RLSAndy

day three of being down to .5 i took my meds late as desperate to get a good sleep but a little to kate and RLS kicked in early, had a bad nights sleep although symptoms didn’t feel bad i think there is an underlying effect thats keeping me awake, the stress is also a major factor and feeling so angry and abandoned by the Drs.

My only hope is that the pregabalin will work once im clear if the DAs 🙏🏻

Joolsg profile image
Joolsg in reply toRLSAndy

It is a horrible, horrible time.I had PTSD for over a year after going through Ropinirole withdrawal. I couldn't sleep in the dark and had nightmares for months.

But every day off Ropinirole, your symptoms will settle.

The pregabalin then should cover your symptoms.

I know Dr Thomas told you to take 450mg, but we would have advised staying on a much lower dose until you were off Ropinirole.

Once you're off Ropinirole, if your symptoms are controlled, you can very, very slowly reduce the pregabalin by 25mg every few days down to a smaller dose that still covers the RLS.

You can also split the dose to extend the cover. So perhaps 200mg 2 hours before bed and 250 mg as you fall asleep.

And there are low dose opioids that work very well for refractory RLS if the pregabalin doesn't allow you 7/8 hours sleep.

But that is further down the line.

SueJohnson profile image
SueJohnson

I agree with Joolsg that when you are off it and the pregabalin kicks in - give it a few weeks - if you find it controls your RLS to try reducing it to see if you can get by on a lower dose. However I would suggest 25 mg every couple of weeks.

RLSAndy profile image
RLSAndy

Post night four of ropinirole deduction to .5…i worked a 16 hour shift on my feet cooking all day, took all my meds late right before bed and had a great nights sleep, a small victory i think should be celebrated because we all know the difference a good night makes to our mental health.

SueJohnson profile image
SueJohnson in reply toRLSAndy

That's great!

DesertOasis profile image
DesertOasis in reply toRLSAndy

If you took the iron before bed last night I would continue to take it that way rather than 6 hours after your morning work-out.

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