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
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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.
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!!
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.
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.
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.
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.
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.
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.
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.
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.
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!
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
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.
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!
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?
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.
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
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
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!
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!
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!
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.
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 🙏🏻
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.
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.
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.
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