Restless legs

[Janette1964]

Has anyone tried ropinirole for restless legs couldn't live without this medication as it works for my restless leg syndrome

[Joolsg]

Probably everyone on this site has been on Ropinirole or Pramipexole. We know them very well. Brilliant at first. Then augmentation hits and they are a nightmare.Keep the dose as low as possible and if it stops working DO NOT EVER INCREASE. Read all you can about Impulse Control Disorder and augmentation so you know what to look out for.

I hope Ropinirole keeps working for you for as long as possible.

[Artismytherapy in reply to Joolsg]

I had to google augmentation after reading your response because I had no idea what it meant. I do now and I must have had it hit me a few years ago as my arms are affected occasionally it’s almost like having a physical tic and it drives me nuts I think I need to talk to my GP I’m on 8mg a night and have been on this dose for well over a decade!

[Joolsg in reply to Artismytherapy]

Oh my good god. That's appalling. Who allowed you to go on such a high dose?This is exactly why RLSUK have backed the campaign to educate doctors in the UK. The max dose is 4mg on the leaflets but the top US experts say it's 1mg. Augmentation is inevitable on that dose.

Your GP won't have a clue, I guarantee, so you need to do your research and print off the articles on augmentation. See the pinnec post on this site.

Your ONLY solution is to slowly reduce by 0.25mg every 2 weeks. With each reduction, wait for your body to adjust and settle before reducing again.

You should also get blood tests and raise serum ferritin above 100 as this can help withdrawal symptoms a little.

3/4 weeks before last dose, start pregabalin or a low dose opioid.

The withdrawal is brutal. I only know of 2 or 3 people who have not had a hellish time.

Read up so you are armed with knowledge.

Ensure your GP doesn't try to put you on another DA like Pramipexole or the Rotigitone patch as you'll augment again quickly.

Also, join the campaign to get RLS taught so GPs know at least the basics.

[Artismytherapy in reply to Joolsg]

My GP put my dose up years ago. I’ve been researching since I read your reply on this thread and I really need to talk to my doctor this is crazy we just assume they know what they are doing! I have augmentation and compulsion problems including binge eating, the need to shop and now even worse skin picking disorder another compulsive problem. Thank you for opening my eyes to why and what is causing my problems

[Joolsg in reply to Artismytherapy]

Impulse Control Disorder is listed in the side effects & your GP should have warned you about both ICD and augmentation. The higher the dose of Ropinirole, the higher the risk of both.Your GP has been grossly negligent and you should consider a formal complaint to the practice and the General Medical Council. In the USA, there have been successful class actions re Dopamine Agonists and ICD. People have lost their homes and marriages.

You are high risk for DAWS ( Dopamine Agonist Withdrawal Syndrome) which is exacerbated by ICD.

I will send all relevant links tomorrow but to find the pinned post, go to the home page and press link to pinned posts. Augmentation and the Campaign to teach Doctors are both there.

The best thing I ever did was find this site. Saved my life, literally.

I bought the book recommended - Clinical Management of RLS by Dr.s Buchfuhrer, Hening, Allen and Lee, second edition. Available on Amazon. It contains all the medical info you need and I take it with me to all doctor appointments.

There are NICE guidelines on RLS, so print off and show to your GP. Ask him to read it before he sees you and tell him you're suffering Impulse Control Disorder and Augmentation and he needs to work with you to get you safely through withdrawal.

It will take at least 6 months because of the criminal dose you're on and you will probably need opioids like Oxycontin to get you through. Keep us updated because your GP will probably give you incorrect info.

Someone will be around to advise. Read all Manerva's responses as he is very thorough and you'll find all the references you need.

If you can get Buprenorphine or Temgesic then your withdrawal will be less traumatic. Lots of us have been through it so can give tips to make it a little more bearable.

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

[Artismytherapy in reply to Joolsg]

I’m guessing you mean the pinned post 😂 how do I find it

[Govan64]

I am taking it at the moment...the first few weeks it was amazing...but now it doesn't do anything...so upsetting

[Joolsg in reply to Govan64]

Then be wary. Don't increase dose. Get bloods tsken and raise serum ferritin above 100. Try splitting the dose. Take half at about 7pm and the other dose before bed. If that doesn't help, slowly reduce and try alternative meds like pregabalin.

[bergfex]

I had taken it for ca 6 months on and off, stopped it because it made me take significantly more risks in my daily life than I would normally do. Scary stuff!

[bergfex]

only available if you are in the UK 😟, not from here in NZ

[Irmajs]

I couldn’t understand why people were against ropinirole when I started taking it. It worked wonderfully for about two yrs. Then it started getting worse and bothering me during the day too. My neurologist told me that RLS always gets worse so he increased the dose. By year 3 1/3 - 4 I was absolutely miserable. I had RLS everytime I sat or laid down for 10 min. I couldn’t drive, my legs wouldn’t hold still. Then I read about augmentation. I got a new neurologist and had her help me wean off ropinirole. Some people have a rough time coming off. For me the relief of lessening RLS outweighed the pain. Also beware that many people get compulsive behavior problems and/or personality changes with Ropinirole (da). I was one of those. I am not trying to scare you. If someone would have told me this when I was just starting out on it, I’m not sure I would have listened because it helped so much. Many have gambled away their homes, lives and families. What is worse is you don’t realize it’s happening at the time. Not until your coming down and it’s scary. I didn’t think twice about spending money, even if I couldn’t afford it. That is not the real me. Hope this article will help. There are other alternatives even though some don’t work as well but can be used long term. Good luck.

rls.org/treatment/managing-...

[involuntarydancer in reply to Irmajs]

This is a super synopsis of the problems presented by dopamine agonists from a personal perspective.

[joepublic]

Once the augmentation starts you will change your mind.

[River58]

I started Ropinirol half a year ago. 0.25 mg worked fine for me for 6 weeks then the effect was almost gone. 0,5mg gave me another 6 weeks but rls came back again and it started also in the early evening. I stoped emediately after what i read here on this site. Nights are bad. In the evening changing heartritm and tintling toes are the premature signs the rls is starting. I'm now after a few weeks withouth ropinirol i take 0,25 occasionally once ore two times a week and then it works for 6 hours sleep. I concider to take Gabapentine but have some fear for the side effects. Can't handel even more problems at the moment.

[Irmajs in reply to River58]

I don’t know where you live and may not be an option for you, but I control my RLS with CBD. It works most of the time and allows me to get some sleep. I have tried most other RLS meds that are available in the States and all had side effects I couldn’t live with. Good luck.

[River58 in reply to Irmajs]

Thank Irmajs, Good to hear you found something working aceptable for you. I come from Holland. CBD is also on my list to try. My doctor say i need a heavy dose of CBD oil and with THC to control my legs. CBD 10% from the local drugstore will surely not be strong enough. Can you tell me witch doses is has proven to be efective for you? You can use PM if you like.

[Joolsg in reply to River58]

Here in England, medical cannabis was made available in 2019. I take 0.7ml of cannabis oil ( Althea Champlain) with 20% THC. It doesn't stop the RLS but it does work well with my other meds. It puts me into a deep sleep for 3-4 hours and the RLS doesn't break through.Definitely worth trying as we all react differently to all meds and it may be all you need to control the RLS.

[involuntarydancer]

Please make sure to keep your serum ferritin levels high while you are taking ropinerole. Your regular doctor should be performing regular tests while you are taking this drug and giving you the actual figure for your serum ferritin (ie not just that you are 'normal'). If the figure is below 100 you need to take a supplement and possibly consider getting an iron infusion. Keeping serum ferritin high can provide protection against augmentation. If your medical advisors are sceptical you should hunt down the various studies by rls experts that support this hypothesis and provide them with copies.

As has already been mentioned, never increase the dose. Use an additional therapy such as gabapentin/pregabalin, a low dose opioid, or (based on a very recent study) dipyridamole when your current dose of ropinerole ceases to be effective (as it inevitably will). And be aware that many/most GPs/neurologists/sleep consultants are ignorant of the dangers presented to rls sufferers by ropinerole and other dopamine agonists and recklessly put their patients in danger of considerable suffering. You will find seemingly endless accounts of such situations on here.

Also be alive to attempts by your medical advisors to switch you to an alternative dopamine agonist when ropinerole ceases to be effective. That way disaster lies.

[Pepper65]

I tried it but it didn’t help. At the moment I’m on pain killers and hoping another “ Cure” will soon be on the market

[Mattly]

I agree with comments people have made. I've been on Ropinirole for about 4 years now. The 2 important things I've found are a) Don't increase the dose (I'm still on 0.5mg a day) and b) Take breaks (a few days) from using it from time to time. You may get the occasional bad nights and things can be hard when taking the breaks, but this regime has stopped me getting augmentation and keep life bearable.

[involuntarydancer in reply to Mattly]

RLS experts suggest that keeping serum ferritin high is also important to reduce the chance of augmentation.

[Missiskyedogs]

Have been on ropinirole for 2 years am now up to 6mg at night. This amount seems to let me sleep through night ok but still get restless legs most of day and all evening. I find the only thing that relieves this is knitting.

[Joolsg in reply to Missiskyedogs]

Sounds like full blown augmentation. 6mg is way over the max dose so augmentation is inevitable.Read the pinned post on augmentation ( main page of website) & consider reducing very slowly over 6 months.

[MoxieLake]

Yes, My doctor put me on ropinrole when I first went to see him to get some relief from RLS. It worked ok for a few months but then my symptoms got a lot worse during the next 6 months. I was having symptoms on and off all day and not sleeping more than a couple hours. When I went back to see him he said the ropinrole was causing augmentation of the rls and changed my prescription to gabapentin. I was taking 600 mg and it worked well but the side effects concerned me so I tried marijuana edibles once they became legal here in my state in the USA and they work fantastic. I almost feel back to my old self again. I sleep great and very few rls symptoms anymore.