Need to come off Roprinorole

[cicek]

Hi everyone. Finally after many years of success I think I have to stop taking Roprinorole. It's worked for so long along with Tramadol but my RLS is back with a vengeance every day now. I know I have to wean off slowly but any advice on what's next? I've been reading what other people are on with some success but wondered if the Tramadol alone would be enough? Before if I see my GP (if I am lucky enough) I need to have some knowledge myself and go armed with that. Any suggestions or thoughts would be very much appreciated before I go down this rocky road. Thank you all x

[LotteM]

Sorry to hear this. Do download the most recent advice from the restless legs study group in Mayo Clinic Proceedings. Very clear, very comprehensive. And if your doctor doesn't want to read it all, there are boxes summarising all items.

See: mayoclinicproceedings.org/a...

Reducing the ropinirole may / most likely will help. Maybe you will have to increase the tramadol. It will probably take some trial and error, and do wait for increased symptoms due to reduction of ropinirole to settle before you decide whether something works or not. I hope you'll find a new effective treatment soon, and without side effects.

[cicek in reply to LotteM]

Thank you. I'll have a look at this.

[Joolsg]

Your GP will have no idea how traumatic and difficult withdrawal from Ropinirole can be.You should aim to reduce by 0.25mg every 2-3 weeks. Minimum of 3 months is recommended by experts. There is a withdrawal schedule by Dr Earley and it shows that the first 48 hours after the last dose you will get NO SLEEP. The next 48 hours will be even more difficult because you'll be exhausted. You need to take time off work and arrange for opioids. I took 50mg of tramadol every 4 hours for 2 weeks after last dose of Ropinirole but it was still hellish.

Read up about Withdrawal and take your time.

Cannabis gave me 30 mins sleep after 4 days of zero sleep and constant, all over body RLS jerks.

[Hidden in reply to Joolsg]

Oh no, I’m currently weaning off ropinerole and had an awful night last night. I was on 1mg of it along with just 200mg of gabapentin. I asked if I could increase the gabapentin and come off ropinerole so I now take 300mg gabapentin and he prescribed me 0.5mg of ropinerole but just gave me a months supply. After about a week I’ve started to cut them not quite in half but I’m getting to that point. I didn’t realise it should take more than a month. Should I be taking something else to help with withdrawal? My doctor hasn’t given me any advice on how to wean off them.

[Joolsg in reply to Hidden]

Please call your GP and explain that you need at least 3 months to reduce the Ropinirole. If you were on 1mg then you should take 0.75mg for 3 -4 weeks, then 0.5mg for 3-4 weeks, then 0.25mg for 3 weeks.The gabapentin dose for RLS is 900mg average but it takes 3 weeks to be fully effective but it won't help until about a month after the last dose of Ropinirole because the withdrawal symptoms are tough.

Show your GP this photo. In Germany, they admit you to hospital to get through withdrawal.

I needed tramadol and cannabis to helo but it was still tough.

RLS UK is running a campaign to educate doctors about RLS because it isn't taught and they don't understand the side effects of Dopamine Agonists.

Please consider writing the template letter to your GP surgery. It's a pinned post.

I'll also send you a DM with the photo from Germany.

[Hidden in reply to Joolsg]

Thank you so much. That’s really helpful

[Hidden in reply to Hidden]

I’m ringing for a GP appointment today. I have everything written down ready.

[cicek in reply to Hidden]

Good luck. I hope you get on OK. Let us know how your GP responds.

[Hidden in reply to cicek]

Thanks unfortunately I always get a different doctor 🙄

[Hidden in reply to Hidden]

It's so difficult to understand a fdoctor when they have you on loudspeaker and my signal kept cutting off the call 😩. Oh well I'm going to have another prescription and then go down to 250mg. He kept saying about how to do it like days on and days off but he spoke so quickly I couldn't get it down. I asked if he could email or text it to me but he's going to write it on the prescription so hopefully it should be on the packet. We'll see what happens. I asked the question what does he know about RLS but he avoided it to be honest by saying you tell me what the problem is or words to that effect

[cicek in reply to Hidden]

Yes I know that's the problem at the moment with GP's so no-one gets to know you personally. With something like RLS I believe an understanding of the patient is very important along with the prescription.

[Hidden in reply to cicek]

I agree. I was trying to get across how if affects me personally as well as physically but he was just not interested. Seems like they want to get rid of you as quickly as possible.

[Hidden in reply to cicek]

I now have my prescription! It’s not what I thought he said. It’s for 0.5mg still but: One at night- weaning off slowly by every alternate day for 2 weeks then every 2 days for 2 weeks then every 3 days for 2 weeks then every 4 days for 2 weeks then once a week for 2 weeks then stop

[cicek in reply to Hidden]

I hope you get on OK. I guess you are in for a rough ride. Do you take anything else to help you? I really have to stick my neck out and see my GP. Up every night again now until the early hours as well as not being able to sit in the afternoon due to RLS. It's a pain isn't it. Let us know how you get on. There's always someone here with good knowledge to help you.

[Hidden in reply to cicek]

Thanks I hope you get on ok too. I have my gabapentin but that’s it. I sometimes take ibuprofen and/ or paracetamol but try not to. It’s weird, some days are worse than others. I get it in my arms and shoulders as well which I think is a result of augmentation. I don’t know what will happen when I have finished with the ropinerole. I have some leeway with the gabapentin as I’m only taking 300mg at the moment. We’ll just have to wait and see!

[Joolsg in reply to Hidden]

This was sent to me by a friend. In Germany they admit you to hospital when withdrawing from dopamine agonists

Colour photo

[cicek in reply to Joolsg]

Thank you. Sorry you had such a bad time. A few years ago (before Tramadol) I did reduce Roprinorole from 4mg to 2mg. Just completely halved it without too much difficulty or medical intervention. I am on 2mg slow release so can't cut them. I do have some 0.25 which I will take 4 a day of and then gradually reduce them. Think I only have about 2 weeks worth though. I know it's going to be difficult which is why I keep putting it off. I did have a GP who was very good and listened to me as she said I knew more about the condition than she did. Unfortunately I have now moved house and have a new GP. Not approached them with the problem yet but guess I will get a negative response if I am lucky enough to get an appointment! GP appointments are a bit like rocking horse poo at the moment. I do think it will be a case of me asking him for what I would like rather than him knowing what to do. Not sure many neurologists know very much about it either. Something I've been dreading but got to tackle it. Thank you again. I will let you know.

[Joolsg in reply to cicek]

You're right- most neurologists know very little about RLS.I reduced from 4 to 2mg of Ropinirole with no problems at all. The augmentation settled for about 6 months and then returned with a vengeance so had to get off. The last 2mg was the hard part.

I hope the new GP listens and gives you the 0.5mg tablets. You can use a pill cutter to make 0.25mg pills.

I hope the withdrawal isn't too difficult, but do ask your GP for opioids to get through the 2-3 weeks when withdrawal symptoms are tough.

Keep us updated and good luck.

[cicek in reply to Joolsg]

Thank you again. The hardest part for me is firstly going to see the GP and explaining it all to him. I guess many people feel this way as so little is known about the condition. I am going through a tough time with AF at the moment too and start to wonder if one thing begets another! Having hardly any sleep doesn't help heart conditions.

[m1946]

I know what you are going thru!You didnt say what prescription you are taking? Ropinirole worked for me for about 6 years. I was prescribed 0.25mg rising to 0.5mg and ended up obtaining a pill cutter from the chemist so that I was able to reduce the pill into 3 parts!!!

Like you I was taking a 50mg Tramadol capsule at the time but increased this to 100mg which I take each night about 8pm.

I have been off Ropinirole for a year now but recently the Tramadol on its own is beginning to lack effect!

So onwards now I guess to yet another programme but what?

[Joolsg in reply to m1946]

Tramadol often doesn't work for many who have experienced augmentation and tough withdrawal from DAs. Tramadol is the only opioid that also causes augmentation.Other opioids like Oxycontin or Buprenorphine/Temgesic are helpful for RLS or the Alpha2Delta ligands- pregabalin or gabapentin.

See your GP to discuss alternatives.

[cicek in reply to Joolsg]

I know Pregabalin and Gabapentin are available in the UK. Are the other opioids you have mentioned available here do you know? Didn't realise Tramadol caused augmentation. It is given out like smarties here.

[Joolsg in reply to cicek]

Yes Oxycontin available and several people on this site have managed to get Buprenorphine ( Temgesic).Many GPs are anti opioids but they work well at low dose for refractory RLS.

[cicek in reply to Joolsg]

Thanks for that. Sorry to be a pain but are these two medications used alone or with the Gabapentin or Prebagablin? Just trying to gather some information before I I put my case forward to my GP 🤔

[Joolsg in reply to cicek]

Most people usually need only one medication. So if you have gabapentin or pregabalin you wouldn't need an opioid. However, Dr. Buchfuhrer often advises that 2 medications at low dose often work better than 1 med at a higher dose. If RLS presents with pain a low dose opioid can be added to pregabalin or gabapentin.

Alternatively, if a low dose opioid stops RLS but causes nocturnal awakening, pregabalin or gabapentin can help with sleep AND RLS.

Sadly, it's often trial and error but most GPs are unlikely to spend time considering this so you may need to suggest it once you start on the meds and see what side effects you get.

[cicek in reply to Joolsg]

Thank you. I can't tell you how helpful you have been to me. I can see my GP now with clear instructions as to what I should need.

[Joolsg in reply to cicek]

Bear in mind pregabalin takes 3 weeks to become fully effective and you should start off with 50mg for a few days and increase by 50mg every few days up to the average dose of 300mg. I found 100 mg was effective with a 25mg of Oxycontin.Take only at night as it's very sedating and can cause daytime sleepiness. Avoid magnesium products 3 hours before or after as it affects absorption of pregabalin.

With opioids, the average dose of Oxycontin is 30mg a day taken twice a day to avoid mini withdrawals.

Also ask for blood tests and ensure serum ferritin is above 100, serum iron above 60 as raising levels can be highly effective in preventing RLS and alleviating symptoms of augmentation.

If levels are low, an iv infusion of Injectafer can dramatically improve RLS in 60% so the odds are excellent.

My local hospital agreed to give me an infusion on the NHS but I'm in the 20% that doesn't get any improvement.

Look at the pinned posts on this forum and on RLS UK main website for lots of helpful print outs on augmentation.

The US rls foundation also has useful print outs on iron infusions and opioids but you have to be a member to access the info. Well worth it as they have quarterly magazines with useful research updates and webinars by the top RLS experts.

[Jumpey]

I empathise with your situation and am sending warm wishes for you to get through this.As you will.And on to another successful regime.I take Tramadol alone. Periodically it stops working due to tolerance. I take a month's break from it and it starts working again. I say this because this may work for you after you have weaned off Ropinerole. Good luck.x

[cicek in reply to Jumpey]

Thank you. I wish you all the best. I am sure I will get through it eventually.

[Fangs]

So sorry to hear about your problem I had to get off Ropinorol I was on 4mg at night before bed my doctor told me to stop it immediately and put me on Gabapentin but it wasn’t effective and I tried to go cold turkey with my Tramadol but it wasn’t working so I was put onto Neupro patches 1mg per day that worked for about 6 weeks and had to up my dosage to 2 mg then after about 3 months I had to get a higher dose to the maximum 3 mg

Unfortunately the adhesive on the 3mg patch is very strong and it caused red marks and blisters on my skin after a while I was advised to put Hydrocortisone cream on before putting on the patch and it works but I still have RLS but not as bad I have had noticed that chocolate late at night doesn’t help or alcohol I hope this information helps you

[cicek in reply to Fangs]

Thank you. Never fancied the patches. I do have an allergy to anything sticky on the skin even plasters. Having said that if I could guarantee they would work I would find a way around it. Never noticed any foodstuffs making anything any worse.

[DicCarlson]

Ropinorol seems to be a Faustian bargain - "Sure, take me, take me - I'm the cure!" Then it's the Devil - "What, it's not working? Take more, take more!" A doc sat me down and said it was the ONLY solution. So glad I found HU and refused!

[TeddiJ in reply to DicCarlson]

Hi. What is HU?

[TeddiJ in reply to TeddiJ]

Oh, dear-you meant this forum. So sorry! Silly me! I was hoping it was some miracle I could try...

[cicek in reply to TeddiJ]

😀I'm glad you asked the question before me. Makes sense when you know.

[Todge]

I am on day 5 of weaning off of the 4mg of Ropinirole I was on. The neurologist I saw for years just merrily upped my dose and sent me on my way. Luckily she was on vacation when I scheduled my last appointment so I saw her colleague who told me immediately to get off this drug. He gave me 4 weeks off from work to hopefully get the worst of the symptoms over with as I go through this awful withdrawal. No sleep again last night. Pure misery. My doctor hooked me up with cannabis to see if that helped. So far other than a few giggly spurts and a lot of munchies, I haven't noticed much relief from the RLS. I am assuming that I won't know the effects of cannabis until the ropinirole is out of my system. It intrigues me that they hospitalize you in some countries as for the last two days I have just wanted to be placed in a coma until this junk is out of my system. Anyways Cicek. Keep checking in so I can see that I am not alone in this fun withdrawal period.

[cicek in reply to Todge]

Thank Todge. Hope you do well. I keep putting off beginning my journey despite being up every night with the dreaded RLS. I am holiday the week after next so that is my excuse at the moment. I will do it and I will ring the doctor. It's an awful thing being nervous to ring the GP. Good luck with your journey. I hope you don't struggle too much and will definitely keep you up to date with my progress.