Ropinirole

[Louise121179]

Hello everyone, new to this group been suffering with RLS for a few years but its got to the point I want to chop my legs off, having tried amatryptaline, codeine magnesium and ibuprofen gel nothing has worked . Had a consultation with a GP tonight not my own and she has put me on Ropinirole which I know nothing about i am being put on a low dose 1 tablet a night for 2 nights then if I'm OK with that to then go upto 2 tablets a night has anybody got any advice or experience of this tablet please x

[Hidden]

My first suggestion is do NOT take ropjnirole before you are aware of all the facts about this drug.

Some doctors do prescribe amitriptyline for RLS, but many RLS sufferers state that it makes their RLS worse.

An opiate can be effective for RLS but although codeine is one, it isn't the best.

I will give you more information later. If you decide to take ropinirole after that, then it's your choice, but please take time to consider it. Major RLS expert organisations recommend that this drug is NOT used for RLS.

[Ashley2241 in reply to Hidden]

I take one pill a night what is wrong with this medication really doesn’t help me

[Hidden in reply to Ashley2241]

Ropinirole is very effective for at least 70% of people with RLS when it's first taken.

There's several possible reasons why it doesn't seem to work for you.

1) Depending on what strength the one tablet is, (they come in different doses), it may be that one tablet isn't enough

2) You're one of the 30% for which it isn't effective

3) You don't actually have RLS.

There is no diagnostic test fir RLS as such it's diagnosed based on symptom criteria. Unfortunately, many doctors may lack experience in diagnosing RLS or interpreting the criteria and can make mistakes. People self-diagnosing RLS can also be mistaken.

Here's a link to the diagnostic criteria

irlssg.org/diagnostic-criteria

If the ropinirole really isn't working for you then ultimately it's doing more harm than good. I suggest you consult your doctor again.

[Hidden]

The first things that your GP ought to have discussed with you are

1 Are there any underlying conditions that might be causing your RLS?

2 Are there any aggravating factors making your RLS worse?

In relation to 1) it would have been helpful if your GP had taken blood tests for any deficiency including iron, magnesium, vitamin B12 and vitamin D.

The most signficiant of these is iron deficiency which can be a causative factor in RLS even if you don't have iron deficiency anaemia.

In this case the most important blood test is for "ferritin". It should be standard practice that if your ferritin is below 50ug/L then iron therapy should be discussed. There is documentary evidence that a ferritin level below 200ug/L is an issue for somebody with RLS.

If your ferritin is below 75ug/L it's advisable to start taking a oral iron supplement. The initial aim of this is to reaise the ferritin level to at least 100ug/L and at least 50% of RLS sufferers can benefit from this.

If your GP did take a blood test for ferritn and said it was "OK" or "normal", then this isn't good neough, you need to know the exact result.

You can read more about iron therapy in my reply to RachelRae

healthunlocked.com/rlsuk/po...

You could aslo benefit from supplements of magnesium, vitamin B12 and D.

In relation to 2) Your GP ought to have discussed if any other medications you're taking may be making your RLS worse.

There are also dietary factors that may make RLS worse too.

Ropinirole

This drug is from one of two classes of drugs that can be prescribed for RLS. Ropinirole is a "dopamine agonist" (DA) along with pramipexole and rotigotine.

The other class of drugs is known as known as "alpha 2 delta ligands" (A2Ds). This includes pregabalin and gabapentin.

Both classes of drugs can be effective for RLS, but both have some unfortunate side effects. They act differently and whereas DAs are more immediately effective the others take 3 - 4 weeks to start working.

Both are dependency producing and once you start taking them, it isn't easy to stop taking them.

DAs have been prescribed for some years for RLS and longer term problems have been found to occur with them.

Evidence suggests that when prescribing a DA a GP should warn you of the complications of taking a DA such as ropinirole.

These complications are augmentation, loss of efficacy and Impulse Control Disorder, (ICD).

ICD is not very common but is a major problem when it does.

Augmentation is very common with all the DAs and is where the drug, after some time begins to make symptoms worse intsead of relieving them. Signficantly worse.

I suggest you read some posts in this forum about people's experience of augmentation and also the "pinned posts".

When this happens, people then have to withdraw from the drug and this is can be extremely difficult leading to serious withdrawal effects. or a conditon known as DAWS (Dopamine Agonist Withdrawal Syndrome).

A2Ds do NOT cause augmentation. It is for this reason that major RLS organisations recommend that A2DS should be the first drug of choice for RLS, NOT DAs.

Please read this article

pubmed.ncbi.nlm.nih.gov/274...

It is your choice whether you decide to take the ropinirole or not. Under the law of informed consent a GP cannot force you to take a medication you do not choose to take, especially if they haven't informed you lof the risks of taking the medication, which it appears your GP hasn't.

It's my suggestion based on evidence that you tell your doctor you're not going to take the ropinirole and ask him/her to prescribe pregabalin instead.

Here's a link to the prescribing guidance for pregabalin for RLS.

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

I cannot advise you about this. I'm only giving you the information your GP should have given you.

[LotteM in reply to Hidden]

Thank you for being so fast and thorough, Manerva. Louise, the only thing I would like to add now is to get online to rls-uk.org and read all the info there as well. But we as patient expert and mostly sufferers of severe RLS are more up to date and acutely aware of the risks involved in the various treatments. Most of the main information sites also have to inform people with mild or intermittent RLS and only barely touch the difficulties that may lay ahead. But, as RLS is chronic and progressive for many if not most people, one should take the long term in consideration already at the start of a treatment.

Lots of work=reading for you to do. But, we're here to help, guide, listen and advice if you want to. May wisdom be your guide.

[Joolsg]

Don’t start it.

Your GP will not be knowledgeable about RLS and will lazily have looked up RLS in her book & prescribed the first med listed.

It will permanently damage your dopamine receptors.

She should have gone through ALL meds you’re currently taking, including OTC meds like Anti histamines and Benadryl.

She should have ordered blood tests before prescribing ANY meds as 50% of sufferers will get complete relief from raising serum ferritin above 300.

Read everything you can on here.

Whoever put you on amitriptyline was negligent- a simple google search of medication which causes or worsens RLS will show that all anti depressants ( amitriptyline is an older tricyclical AD) should be avoided- except Trazodone and Wellbutrin.

I wish I had never started Ropinirole.

At least now the experts in the USA have written and published research articles so we now know that within 5-10 years over 90% of patients on dopamine agonists like Ropinirole will suffer Augmentation. That is hell on Earth & withdrawal from Ropinirole is even worse.

Contact your GP and ask for diazepam or clonazepam on a short term basis to settle your RLS until you get the results of your blood test.

Raise ferritin by taking ferrous bisglycinate every other night if levels are below 100. Your GP will say levels are normal if above 15 but that doesn’t apply to RLS sufferers.

If you’re unable to raise levels by taking oral pills, ask for a referral for an IV iron infusion. If GP refuses,come back here and we can send links to research articles which may help persuade her.

There are other meds that can help if raising ferritin doesn’t resolve the symptoms.

Low dose opioids or Gabapentin or pregabalin.

Your GP sounds incredibly ignorant about RLS!

We’re not overreacting- we just want to save you the agony of years on a drug that you probably don’t need if the necessary tests were carried out first.

Read Manerva’s posts and replies to people asking about pramipexole- a similar drug- and all the links to NHS best practice are there.

[Ohwhy]

I was put on that 2 weeks ago and let me say yes it has worked for my legs but.....im very depressed and have never dealt with depression. So I'm getting off of it

[YodaDog in reply to Ohwhy]

Be careful how you come off it, even after being on it for a short time you may suffer withdrawal symptoms, which can include making your RLS much, much worse. Read posts on here about coming off it very slowly or ask by starting a new thread.

[Helengreenland]

Hi I have been on ropinerole for at least six years now for me the only thing that worked! I take mine at 9 pm or an hour before bed seems to work best. You may find it brings the rls on to start with but usually after an hour it goes again and you can settle for sleep. I totally sympathise with you the times I've said to my husband please just chop my legs off!!! Rls is so debilitating and unless you have suffered from it people just don't understand how awful it is.

Hope you get some relief from it soon

Helen

[Ohwhy in reply to Helengreenland]

That is what my doctor put me on and I'm having terrible side effects depression really sleepy Exedra very bad mood swings and I've only been on it 2 weeks so I stopped taking it last night and I've been up 24 hours

[Poppip]

Hi Louise, I totally understand your position and taking the Ropinirole will give you short term relief. But unfortunately I do agree it is not the best choice of treatment. It’s Important that you read about Augmentation before you start it. I have tried absolutely everything at this stage with very little luck.

My Gp has now suggested an opioid which I was dead against but it’s beginning to ease the symptoms no doubt. Best of luck to you . Stay reading this group’s page. Hugely informative 👍🏻👍🏻

[Tabrizius]

There is some really good advice here and thank you all for sharing it so quickly. This feels like a tightly knit support group! I was prescribed also ropinirole and after reading a big about it I did not go close to it. I still look at the medicine in my fridge from time to time but the side effects are not worth it I thought. I have tried more physical help. I find putting pressure on my calfs reduces the urge to move, I bought compression socks for runners and they do really help. I also bought a foot and calf massager and for now it really helps me. Sauna seemed to have a great effect too....If you have not tried already I would try these first before any medication.

[Ailbat70]

Hi Louise, I have been talking 2 ropinarole nightly for 3 years, the y have been so good, for most of that time... allowing me to sleep well most of the time. A few nights every few months, especially if I was stressed, my legs would bother me but most of the time, the sheer bliss of a good nights sleep. I would recommend them

[Tuccatoo]

Do read all the comments on this hub as they are so helpful. You must make your own decision but many of us will tell you to be really aware of the fact that Ropinirole and the other Dopamine Agonists will ultimately turn and bite you! Its great for some time and then you will find it doesn't work and you increase it and then it doesn't work again. ..... This is Augmentation. Then you have to come off it and I can tell you this is not a nice experience and something I really would not want you to have to go through.

[RottenRussells]

Love my Ropinirole. Sleep like a baby.

[rls-insomniac]

There's some good advice on this thread regarding ropinirole. Do be careful with it should you decide to start taking it. There are drawbacks in doing so as well as short term advantages.

For me ropinirole caused me havoc and I suffered with severe augmentation. I then started the process of weaning myself off it. It was ghastly and I will never touch a dopamine agonist again.

[Momof10]

I took requip, which is off brand ropinirole, for about 2 years. The augmentation from this drug was so bad that I couldn’t even sit down to watch a movie with my family or go for a car ride for longer than 30 min. I was scared to death of running out! It was miserable! It took me a while to wean myself off and I still can’t believe after about 8 months that I was able to do it! I’m new to this site also so I’m trying to learn too. I want to try something else but I never want to go back on requip!

[Seaux]

Don’t forget very important food issues. Limit your sugar intake and carbs Intake bc our bodies turn carbs into sugar. Doing this has helped me a lot!

[Hidden]

I may be rare, but I am a successful user of ropinirole for years as a person with severe RLS. I've tried other meds with my neurologist, but this is the only successful one for me, and with no side effects. I'm now 77 and have had very bad RLS for at least 20 years. I take .25 mg 3 times a day and have done so for a very long time - many years - with no need to increase the dosage, and I have no signs of the dreaded restlessness. I take it when I first get up, then at mid-day and again at bedtime. I know I still have RLS because on the rare occasion I forget to take the pill, several hours later the symptoms will occur and I race for the medicine cabinet. I am very grateful for ropinirole in my life.

[Hidden in reply to Hidden]

You are a rare one to be able to take Ropinerole for many years i hope it continues for you.

[Hidden]

I suffered with RSL for years. I was prescribed Ropinrol and was up to the max dose but to no effect. I decided to come off them and suffered awful withdrawal symptoms. I managed to be free of them and one day was driving behind a bus when I saw an advert for a chiropractor. I decided to go for it. The long and the short of it is I’m now fixed! No more restless legs, I sleep all night and can even go to the cinema. It’s cost a few quid but I now only go once a month for a maintenance session. RLS was a result of trapped nerves in my spine. I urge anyone to give it a try. It’s the best feeling ever to wake up refreshed. Good luck