I have recently been diagnosed with RLS. My Doctor has recommended a course of Ropinirole.
I have done some research on this drug and am concerned about the fact that it may help in the short term but could make the condition worse in the long term. The term 'augmentation' was used.
Does any one have any knowledge or experience of the long term effects if Ropinirole.
You are absolutely right. Up to 70% of people on ropinirole will eventually suffer from augmentation which believe me you don't want. The medicine you want is gabapentin or pregabalin. But the first thing you want to do is when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If this is not the case then post back here and we can give you advise on how to improve it. Ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 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. You don't need to split the doses with pregabalin. 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 ( 200 mg to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Hi Sue,
Thanks for the advice about getting my Ferritin level checked.
I contacted my GP who told me that my ferritin was checked last month and this was within the normal level range. I was then told my level was 69 which is well below the 100 level which you indicate is required. Can you let me know if the 100 level is recognised independently as an acceptable level. If this is the case I can go back and challenge my GP's assertion that a ferritin level of 69 is acceptable.
I had raging RLS with a Ferritin level of 49! Docs said normal! They waved Requip (Ropinirole) at me repeatedly. Thanks to this forum I never took it. Iron supplements relieved the severe RLS within 3 months.
DicCarlson,
Thats interesting and very helpful. Have you found relief by taking iron supplements alone, without any other medication?
I had no knowledge of RLS or its treatment until earlier this week. I was almost embarking on a course of Roprinirole but thanks to this forum, I hesitated.
Yes indeed. I really had severe RLS (probably stemming from a skiing head injury some months prior). At the worst - I maybe got 3 hours sleep/night with my legs propped almost vertical with couch cushions! It really took me a couple of months to determine I had RLS. This is what saved me - The Johns Hopkins Neurology website "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy... on average improved RLS symptom after 3 months."
I still have protracted sleep issues and insomnia - but not that severe RLS.
Print out the appropriate section of the Mayo Clinic Updated Algorithm on RLS that I provided a link to you. It discussed ferritin and that it should be 100 .
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Also, here is a list of some medications that make restless legs worse for many people:
Sedating antihistamines , SSRI and SNRI antidepressants, tricyclic antidepressants, statins, diuretics, lithium, melatonin, calcium blockers, calcium antagonists, steroids. central nervous system stimulants, dopamine antagonists, many but not all anti-nausea medicines, some but not all antacids, some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners, some but not all anti-anxiety, many medicines that treat bipolar and other mental health problems, many medicines that treat epilepsy and many drugs that treat GERD
I notice in your profile you list amitryptiline. That is one of the medicines that make RLS worse for many people. A safe antidepressant in Wellbutrin or trazodone.
Hi Sue,
Thanks for taking an interest.
I have been suffering with pains in my feet , legs shoulders and back for several months. My GP found my symptoms mysterious and prescribed Amiltriptyline whilst awaiting the opinion of a consultant. I saw the consultant yesterday who diagnosed RLS and advised me to stop the Amitriptyline and Naproxen and recommended Ropinirole
I have reservations sbout this medication and I am trying to seek the opinion of others before deciding on an appropriate course of treatment
If I could go back in time I would NEVER have touched Ropinirole knowing what I know now.
In the UK, RLS isn't taught to doctors at any stage so they know ZERO. They dismiss the link to brain iron & have no idea that commonly prescribed meds cause or trigger RLS. Amitriptyline is one.
Everyone will eventually suffer a severe worsening of RLS on Dopamine Agonists, it's simply a matter of time. Augmentation is hell on earth and to avoid it, don't start Ropinirole.
Educate your GP by directing him/her to the Mayo guidelines and explain that the NHS and NICE CKS guidelines are outdated.
If more people reported Impulse Control Disorder and Augmentation ( increase in severity of RLS symptoms) via the Yellow Card reporting scheme, these drugs would be withdrawn.
Many of us now have permanent damage from years on Ropinirole. Just read the posts on here about Ropinirole and Pramipexole or visit any FB help group to see the scale of suffering.
The majority of patients will see dramatic improvement by raising serum ferritin above 100, often much higher. GPs dismiss this. They're wrong.
If raising ferritin & avoiding the mefs that trigger RLS doesn't help, you could then consider better meds like pregabalin or gabapentin.
Learn all you can to advocate for yourself.
Hi got to agree with you about Ropinoroil I have been on it 10 years I am so ill with it I am screwed tried to come of but I can't keep awake tried 4 times to get off this crazy drug all ok for about 8 days then the withdrawal effect starts you just sleep 24 7 and does not stop after a few weeks
It is possible to get off it but you have to go slowly. Drop 0.25 mg every 2 weeks & ask for a low dose opioid like codeine, tramadol or oxycodone to help the withdrawals. Medical.cannabis also helps.Most people will have a hellish 2 week's withdrawal with little or no sleep but, once through that, the RLS becomes far less intense and only happens at night.
If you raise serum ferritin above 100, preferably 200, it can help.
Start a replacement med about 4 weeks before the last dose of Ropinirole and that can also help reduce withdrawals and then, hopefully, it will cover the RLS.
Sleep is the problem I can't keep awake can't drive or do anything tried taking it really slowly but soon has I get down to .25 I get massive withdrawal from the drug does not help my doctor's GP don't help and I have paid a fortune to so called speclist it's that bad I am going to contact mayo clinic to see if they can help in UK do one seems to have clue how bad it is Just had a massive attack today struggled all day with pain finally have in and took soon oxicontin with in 10 minutes all symptoms had gone my doctor will not give me oxicon I just have to suffer that's why I have come on here really desperate now it's really got to me
I suggest you make an appointment to see Prof. Walker at UCL Queen Sq London. He will help you by prescribing an iron infusion if you need it and low dose opioids to get you through withdrawal. He at least knows more than most UK neurologists.
Medical cannabis can also be obtained from any UK private medical cannabis clinic. You should explain you are suffering severe RLS and it involves pain and you are unable to sleep. Cannabis really helps the withdrawal symptoms and it is now legal in the UK for medical reasons like this. You have to pay privately but a month or two supply should help you through the worst time. Solpadeine Max can also help as it contains codeine and paracetamol, but codeine 30mg would be better.
I am so sorry your GP won't help more. Have you asked for pregabalin to replace the ropinirole? Some people find that eases the withdrawal once they've taken it for 3 to 4 weeks. The average dose for RLS is 150-200mg taken at night.
Also, Oxycontin is mentioned in NICE summary so print off the info and show your GP. It may persuade him/her to allow you to take it. Low dose opioids are safe and effective for refractory RLS where there is no history of abuse and this is set out in the Mayo algorithm, the latest and best treatment advice from the world's top experts. I know some local trusts won't allow Targinact as it's more expensive than plain oxycontin, but hopefully, Prof. Walker will tell your GP what to prescribe.
Sadly, until GPs and neurologists are educated about RLS, patients will continue to suffer.
Also, I suggest you make a new post to introduce yourself and explain your position. Lots of people will help and the vast majority know far more about RLS than their GPs and neurologists because RLS isn't taught at medical school or during training.
You should have full panel fasting blood tests and a review of ALL your meds to see if any make RLS worse. GPs are unaware of the link to low brain iron or the meds that worsen RLS like anti depressant, anti histamines, statins, beta blockers and PPI gastric meds.
Hi sorry completely lost this post Thank you for the information I only to take 0.25 got it right down but can't get past this I get really depressed and massive fatigue can't keep awake seeing my GP Tuesday but although she wants to help she simply does not understand or knows about DAWs
Can't understand why I can't find this site when I come of it
I think it's because you're replying to someone else's post rather than making a new post.Try searching 'members'. Find your name. Then click on 'replies' and you should find where you have written a question.
It's better to start a new post.
Out of interest Don, did you see a private neurologist? We're trying to get together a list of knowledgeable neurologists who are aware of the latest research & treatment but there are only a handful in the UK.
If you could DM the info I'd appreciate it.
If you need to see a decent neurologist who will avoid Ropinirole, Pramipexole and the Rotigitone patch and is familiar with the benefits of iron infusions, Prof. Walker at UCL, Queen Sq, London, does phone consultations.
Hi Joolsg,
My GP was baffled by my symptoms and decided to refer me to a consultant but as it was not clear that my problem was neurological she referred me to a General Medical Consultant who diagnosed my RLS .
Sorry I cant help further.
Interesting. Have a look at the RLSUK website & rls.org & read the diagnostic criteria. It may clarify things & you can confirm whether you have RLS.
The unbearable need to move and relief from symptoms when you move is key.
What Joolsg referred to is this: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
Hi Sue,
I had not heard of RLS until my consultant diagnosed it yesterday but I do meet the criteria to which you refer. So, unfortunately, it is evident that the diagnosis is correct and I, reluctantly, join the club of RLS sufferers.
Hi Don,
Sue's knowledge is far reaching and seems well researched. I have been using THC oil applied a couple of hours before bed and have been sleeping for 9 hours every single day since taking it. A game changer for me but not necessarily everyone's first choice. I'm in the UK and a doctor wouldn't likely prescribe it to me so I took matters into my own hands. I don't know if Sue has an opinion on my remedy?
hello, I see see that say THC applied does that mean that you rub it on? Is it a cream or one one that put on your your gums?
Yes I rub it on my gums with my finger. Just a pin-head amount. Coconut oil beforehand in the same way, to help the THC activate quicker.
Hi Don. I wouldn't start on the ropinirole. Sue is right with her comments. It would appear that your doctor/consultant do not have the updated knowledge on the treatment of RLS otherwise you would not have been prescribed ropinirole in the first instance. It is no longer used as the first line treatment for RLS because of the nasty side effects, especially augmentation. I myself took it for over 16 years having to continuously increase the dose as my symptoms were getting worse and worse. I was suffering with horrendous augmentation and my GP had no idea that or what it was! It took me a long time to wean myself off it and it was probably one of the most traumatising experiences of my life whilst doing so.
Hi Rls-insomniac,
Your comments are very much appreciated and echo the majority of the comments that I have come across regarding the treatment of RLS. I will book a further appointment with my consultant. I normally would accept the advice of a consultant without question but it would appear that his knowledge is not up to date......
When I saw my consultant (or rather his sidekick) I went armed with as much information as possible regarding the treatment of RLS. I would suggest you print off the latest Mayo research paper which Sue has given you the link for. It's very informative and does come from an extremely reputable source. The Mayo Clinic is a world renowned institution. My consultant initially tried to put me on the rotigotine patch which is another DA. I flatly refused it as I'd done my research (mainly from this site). He then prescribed gabapentin. Gabapentin or Pregabalin is the first line treatment for RLS nowadays.
Don I have been on Ropinole since 2007. When I asked if we could up the dose my doctor introduced gabapentin. Now I have RLS all day so I need to take my combined pills at certain times through out the day. Start at noon, then 4:30 then around 8:00 then again if I head to bed late. Usually around 1:30-3:00am it will start up again. I am very thankful for my meds because this disease is god awful. But you know something could be worst. God is good. God Bless
Caitieann,
I am a relatively new sufferer of RLS and do not experience it all day as you do. That must be very challenging and I feel for you. You appear to have a strong faith and, hopefully, that helps you to endure the discomfort until a miracle cure is found.
Take care and try to smile.
Caitieann,
Your all-day symptoms are because of the ropinirole. That's what it does, over time. That's what augmentation is. Praying is fine, but better is to gradually reduce and then eliminate ropinirole over a period of weeks or months, depending on how much you're taking. See Sue Johnson's advice, posted frequently on this site, on how to do that.
you will eventually augmentation on pregabalin / gabapentin / ropinirole
best if you can check your iron levels or see if you need to take b12
Gabapentin and pregabalin don't cause augmentation. Augmentation is a worsening of symptoms that start earlier and earlier in the day, prior to taking a dose. Gabapentin and pregabalin lose effectiveness over time, but they won't make your condition worse. If raising iron levels and trying other dietary advice on this site doesn't work, gabapentin or pregabalin are the drugs of choice.
Don, ALL dopamine agonists are a gift from the devil! Please listen to everyone’s warning. It took me two years to get off of this horrible medication. I was told by a top RLS specialist that I have permanent brain damage from this medication. Wishing you the best and again stay clear of ropininirol and Al, if the other DAs.
Merny5,
I appreciate you advice based on your bad experience of using DAs and wish you well.
I am learning quickly about the dangers of roprinirole and I am quickly learning that it is a drug to avoid.
I need to have another discussion with my consultant.
ropinirole for travel?
Ropinirole reduction 
