Following a diagnosis last year I've been on Ropinirole ever since. Unfortunately, my GP is one who thinks this is the best drug for RLS. I'm on the lowest dose, 0.5mg and the practice pharmacist says we should try to keep it as low as that if possible. However, it's not even touching the sides anymore.
RLS used to come on after dinner in the evening when I want to relax and watch TV. Now it comes on any time of day if I sit still, like right now at my computer, or if I sit down to have a cuppa on the sofa for a bit. It ruins the enjoyment of everything, I invariably take myself off to bed early to try to get to sleep.
I think what I need to do is talk to my GP and ask for a different drug, referring to all the research that's mentioned here and on the RLS website. I'm just so tired of it. I have an ongoing battle with another condition and I've learned to live with that largely. I can't do the same with this though, it's just too much.
What do I do if the GP doesn't listen?
Written by
RVC_Hants
To view profiles and participate in discussions please or .
It sounds like you are augmenting. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. You need to come off the ropinirole slowly. Reduce by .25 mg every couple of weeks. You may need a low dose opioid, or you may not since you have only been on it for a year. As you probably know you will suffer, but it will be worth it in the long run. Ask your doctor for gabapentin. Start gabapentin at least 3 weeks before you are off ropinirole since it takes at least 3 weeks to be effective, although it won't help much until you are off ropinirole for several weeks. Beginning dose is usually 300 mg gabapentin or 100 mg gabapentin if you are over the age of 65. Once you are off ropinirole for a few weeks, increase it by 100 mg every couple of days until you find the dose that works for you. take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Have you had your ferritin checked? If so what was it? Also what medications and over the counter supplements are you taking? Refer your doctor to the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.
Thanks so much for all of this useful info. I've saved the report and will direct my GP to it. Ferritin was checked last year but I've no idea what the results were.
The only other thing I take is Vit D - I've had a deficiency in the past and although all my bloods were normal this was the only one that was a little on the low side.
Change GP. Ropinirole is not first line treatment any more & he should know that or at least bother to research it.It sounds like you're already augmenting. Did he warn you about augmentation and ICD? Did he take bloods & ensure serum ferritin was above at least 100? Did he discuss the list of meds that worsen RLS like sedating anti histamines and anti depressants?
You can print off several research papers & show them to your GP & explain that Dopamine agonists are no longer first line treatment.
The Mayo algorithm is essential reading and the NHS and NICE guidelines on RLS can be printed off.
Although all references state that 4mg is the max dose, top experts have stated they believe it should be 1mg maximum. The pharmacist is right!
Slowly reduce now by dropping 0.25mg every 3 weeks while increasing pregabalin by 25mg every 3 days.
Also raise ferritin over 100 by taking ferrous bisglycinate every other night.
Thank you for replying, that's really useful. I don't take any other drugs, I was originally on Amitriptyline, but swapped onto Ropinirole when I got worse.
I'll look into the ferritin thing, I don't know what the results were.
I think the dose is too low for augmentation. Find a good neurologist. If the first one you try you don't like try another. Get the one you like and the one who listens and takes this all seriously. RLS is horrible and nearly impossible to find compassionate, knowledgeable help. I finally found a fabulous neurologist.Also extended release ropinirole is helpful and less likely to cause augmentation
Thinking of you as I know how frustrating it is.
in reply to
You can augment on a low dose of a dopamine med Dr B says and it does sound like the poster is indeed augmenting
in reply to
I think it best to have a Dr. Determine that. A neurologist would be the better choice.p
The dose is not too low--first hand experience. The neurologist has no magic method to determine augmentation other than to ask the same questions that Joolsg talks about.
Dr Buchfuhrer is an expert on RLS and is one of the authors of the Mayo Clinic Updated Algorithm on RLS which is the bible for treating RLS. I assure you he knows a lot more than your doctor.
No matter what sight or post on social media there is always one of you. The classic bully who is always right. Let me remind you, we are all individuals and all different things work for all different folk. I don't purpose to be right or that my Dr. Knows more then anyone. I was just sharing about my own experience. Isn't that what this site is about. Lay off the oxy it makes you grouchyPick at a worthwhile issue and get over your self.
Just Google best neurologists in the city you live. I didn't like the first one as I was having pain as well and he could not see outside the RLS. So I found a neurologist who did the nerve muscle testing for carpal tunnel, neuropathy and other disorders and he was terrific. Compassionate, patient and knowledgeable and supportive. Turns out I have neuropathy which exasperating the RLS.
Just find the neurologists in your area depending on insurance you may or may not need a referral.
I am just so happy I found someone who gets it. I was just wanting to share my experience. As I said before it's such a frustrating condition. Oh he also did all sorts of blood test. Ferritin which I have tested fairly frequent and other related labs that in never knew were related.
Pregablin has helped me immensely along with ropinirole extended release which apparently is not apt to cause augmentation or not as much.
Sugar and blood sugar is also a bigger for me. Have some protein before bed not sweets to keep blood sugar even.
Now this was my experirnce that I am sharing. I learn something from every post. I am not saying this is what will help you. But the more information and awareness that we have as patients is worthwhile, and helpful not matter how small.
I can relate to the frustration and discomfort. I wish you good sleep, calmness.
Thank you so much, I really appreciate hearing people's experiences, it gives me hope! I'm in the UK, so it works slightly differently in that we have to be referred by a GP, but there is a local neurology department with Drs that have lots of letters after their names.
Your doctor can refer you to see a neurologist but have to tell you we here in the UK don’t have many who are experienced in RLS. Hants i take it is Hampshire UK. I am further along West Sussex.
You can ask to see Prof. Walker at Queen Square in London. He does phone appointments but as you're clearly in augmentation, don't consider another dopamine agonist ( Pramipexole or the Neupro Patch) as you will very quickly augment again.You should first push for an IV Injectafer infusion as 60% will have dramatic improvement and will not need meds. Several UK hospitals have now done these for RLS patients, including St George's, London, Royal Cornwall in Truro and Sheffield.
Write to haematology department at your local hospital and ask if they'll consider it ( attach the Mayo algorithm).
Hidden and grassgree are spot on. The dose is not to low for augmentation. My experience, 5 days after 0.5mg increase to 1mg i augmented and continued on that path for 5months before I knew what augmentation was. I believe this is something DR B confirmed in one of his study’s too.
Don’t ever be sorry for your input. We are all going through the same suffering. And we all want the same thing. Better knowledge around the globe for RLS.
Yes we are all individuals. But I think one thing most will agree on here Dopamine Agonists (DA’s) and augmentation on them is hell on earth. My experience has left me calling it Devils Juice.
And it cannot be said you can’t be suffering augmentation due to low dose, on that very point you made we are all individuals.
I always say to people in life. ‘Stay humble ‘. This forum has always been my saviour and I would never like to see any animosity amongst members.
Ask your GP to send you to a neurologist. They are so much better at diagnosing and getting you on the right meds. I finally had to ask my GP because he tried me on every drug out there and nothing worked for me. Finally the neurologist put me on the meds that actually work for me. Good Luck
You need to come off Ropinirole as it causes augmentation which feeds the RLS in the end - it has to be done gradually over a period of months. I swapped to Oxycodone (opiate) which means constipation & NO alcohol ever, but does keep the RLS at bay until about 9 PM.
I live in the U.K. and I, too, was prescribed Ropinerole but a much higher dose than you are on.I was referred to a Neurologist who expressed his concern about the dosage and the high possibility of augmentation, which indeed followed two months later. Withdrawal was miserable!
I am now using rotigotine patches, and have been for about 12months and as yet no augmentation. Yes, it is a dopamine agonist but the research shows it is less likely to cause augmentation so I remain hopeful.
Why not switch to gabapentin and never have to worry about augmentation? It is true that you are less likely to augment on the patch, but it is basically ropinirole which you augmented on before, so it is likely you will augment.
The problem that you are experiencing with your GP is due to NICE approving Ropinirole for RLS. That is due to it being approved for Parkinson treatment and subsequently for RLS. GP's often treat patient RLS symptoms as anxiety based and treat with Amitriptyline, but that only makes the symptoms worse.
From what you have described so far I think that it's unlikely that you are suffering augmentation. The general advice is that above 2mg the chances of augmentation is much greater, unfortunately for some 2mg of Ropinirole doesn't have much benefit, so the GP increases the dose to the max recommended by NICE to 4mg. Ardartrel, Requip and NHS generic Ropinirole can be dispensed. I had the very bad experience where the Chemist refused to give me Ardartel as my prescription was for Ropinirole, and not having generic Ropinirole, refused me Ardartrel because it was too expensive , and then had to get my GP to prescribe Ardartrel so that I could get the Ropinirole that I needed. !
Ropinirole in the UK can be often be prescribed as a 2mg slow /modified release tablet. Although it's purpose is to alleviate RLS symptoms over a 24hr period it may work initially but it's my experience that it doesn't.
I have been prescribed many of the UK dopamine agonists and experience has been of limited RLS suppression benefit and eventual augmentation.
As I said before , I think that on such a low dose of Ropinirole it's unlikely you are augmenting , but obviously RLS is not being adequately suppressed. This is a general observation of mine, and that is that RLS patients suffer two issues that need treating - 1- RLS , and 2- Sleep issues. Treating 1 is vey unlikely to solve 2!
Many GPs don't have much knowledge or experience of treating RLS or recognising the symptoms. On the UK RLS web site you can find an item called RLS Monitor . It's a couple of pages you can print off and record your daily symptoms, including sleep pattern , etc. Then when you next see your GP you can take the Monitor sheets along and shown how RLS is affecting your daily life/ sleep pattern. With that info , either the GP will refer you to a sleep clinic or a Neurologist that has had experience of treating RLS/ nerve injury. Continue with the Monitor and take with you to the appointment you are referred to.
As you are being treated in the UK advice from other countries is not always relevant to what is possible here. Having been down the road you are on, I haven't yet found a drug that eradicates RLS from my life. All of the drugs prescribed have side effects and limited RLS suppression benefit. If and when you switch to another medication for RLS there will be side effects which you may or may not be able to tolerate. eg - Patches, for me where a nightmare to use, and they had no benefit at all!
Gabapentin is a great drug for managing RLS for many, but had no benefit for me, and I suffered very bad stomach and bowel problems. Pregabalin is a very similar drug to Gabapentin and it has been better tolerated by my stomach and bowel, but doesn't help me to sleep. Pregabalin allows me to have a normal life, but I still have bouts of RLS . My daily dose is 300mg and this is the NICE recommended max, although I am experiencing RLS break through during the night I can manage the symptoms better. I get out bed and go and have a cup of tea, listen to some soothing music and 30 mins later back to bed and sleep.
My RLS is managed by the Sleep Clinic at Guy's Hospital London. If the RLS break through becomes unbearable then Guy's will prescribe a Pregabalin increase or try me on an alternative , but I will never go back on Ropinirole or similar Dopamine Agonist.
I said earlier that "RLS patients suffer two issues that need treating - 1- RLS , and 2- Sleep issues. Treating 1 is vey unlikely to solve 2.". For me, Pregabalin answers my current RLS treatment need. A Neurologist from UCL hospital London attempting to solve my RLS/ Sleep problems prescribed for sleep issue, Trazodone 500mg , 1 to 2 tabs at night. The RLS defeated him and hie referred me on to Goy's Hospital, London. The team at Guy's Sleep Clinic have continued to prescribe Trazodone and I rely on it to get me off to sleep at night. RLs can disrupt my sleep, but I don't take 2 tabs I just stick to the 1, and manage the sleep/ RLS as I have describe earlier.
What works for treating RLS/ sleep issue in one person, may not work for another. RLS is a journey and I very much hope that you get the medical time and support you need. The RLS UK web site has a lot of useful info and as does the NHS UK web site. I strongly believe in the use of the RLS UK Monitor as a means to getting that help you will need on your journey.
First and foremost please knowledge yourself up on everything there is to know about RLS. This is will your best source of relief. And stick with this forum.
On a previous post you said a GP prescribed amitriptyline for neuropathic pain then it was said you had RLS and started Ropinrole.
If you do have RLS then before you start medication you should look at genral considerations. For example iron, serum ferritin levels, things that make RLS worse, for example antidepressants. Especially amitriptyline. (I’m not surprised you went from a few niggles (the neuropathic pain you describe) to full blown RLS). Drastic lifestyle changes in diet, exercise. These are just a few of many genral considerations.
Then if you need medication. YOU DO NOT START DOPAMINE AGONISTS (DA’s) In your case Ropinorole. 6months in and the relief has gone. (Same as my case). DO NOT INCREASE DOSE. Most get relief of DA’s for years before augmentation, but some (like me and you and others ) it can happen quite quickly on low dose.
On thing I will tell you, if you continue on Ropinorole your options will limited later on in treating RLS.
Please read up on everything, maybe just read my journey and all the comments. It was a eye opener and I’ve been able to control my RLS on little or no medication thanks to this forum and cluing myself up.
Joolsg not another one prescribed Ropinrole as first line treatment and before general considerations. 🤦♂️ What are we going to do.
Thanks for replying. I've had this on and off for as long as I can remember but back in 2020 it became more frequent and that was the time I first discussed it with my GP as it was seriously affecting my sleep and general well-being. Amitriptyline was the first port of call and it was some time later when I went back to my GP and said this was much worse, which was when RLS was finally diagnosed and the medication changed.
I eat healthily and exercise regularly so there isn't much to change there that will benefit me. But I'll read up on your journey and see if there's anything I can take away from that.
Excellent book to read is'The Clinical Management of RLS' second edition, by Drs Buchfuhrer, Allen, Lee & Hening. Available second hand on Amazon.
You can read it pretty easily as a lay person and show it to your GP.
In conjunction with the Mayo Algorithm, it's the best resource.
It's really sad that most UK RLS patients will know more about their diseases than most neurologists.
Educating the medical profession is essential - they aren't taught anything about RLS at any stage in their training and NICE and NHS guidelines are now out of date.
I've tried Freegaza, I've tried. I started the campaign last Summer to get RLS taught at med school & during GP training but the Royal College of GPs refused.It would also help if everyone with RLS in the UK became paid up members of RLS UK so we could have funds to fight the nedical establishment.
But everyone stays in their separate FB groups & they don't come together to demand basic knowledge & treatment.
We'll continue to see horror stories on this site until everyone joins together to demand change.
It's criminal that here in the UK, even neurologists don't know the basics.
I know you have campaigned endlessly, and my hat goes off to you. I watched the most recent on BBC reel. The awareness you have raised. A true inspiration. I wish I could do 10% of what you had been able to do.We will get there one day. Hope you feeling a lot better then you were.
A little update. I've given up getting anywhere with my GP. I'm currently coming off Ropinirole (expect to be off it fully by mid this week) and I have no alternative solution.
I've cited research and the GP dismissed it saying that the other drugs aren't licensed to treat this condition in the UK and Ropinirole is the first port of call.
Even at such a low dosage it's pretty bad - I either experience symptoms before taking it or shortly after. I haven't a clue what I'm going to do but at least I won't be on this drug anymore.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ropinirole
ropinirole
Ropinirole 
Ropinirole
Ropinirole 
