Hi, I have just joined this forum and would appreciate some advice. I have had RLS for 24 years and am currently taking 7mg of a dopamine agonist (6mg XL Repinex and 1mg ropinerole) each night. Yes, I now know a DA was not a good idea....
If there is anyone else who has been on this dose (or more), how do you deal with the exhaustion? Has anyone managed to reduce or replace their dopamine agonist medication and if so, how and with what?
Many thanks.
The first thing to get board is that you have to get off the DAs.
Your life will otherwise only get a lot worse.
It may take months to completely get off ,but it will be worth it ,in the end.
You can read up most of Sue Johnson's replies to many posts on this site, to get an idea of what you need to be doing.
Good luck.
Thanks so much for your reply, and your assurance that it 'will be worth it in the end'. I have to believe that! I have found this forum very useful so thank you for replying to me, I need the support at the moment.
Welcome to the forum. You will find lots of help, support and understanding here.
You are not at all alone. Many have been through what you are going through. You need to come off the DA since you are augmenting. The maximum dose is 4 mg.
Since you are on the slow release ropinirole you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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 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. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile your gender.
Yes I was on 6mgs of Ropinirole and augmentation was pure hell but it had to be done.Took me nearly a year to withdraw with Sue and Jools amazing help. There is no quick fix but you wont regret it. The hardest but best thing I have ever done. Good luck
Thank you. I need to hear that it is worth it!
You certainly aren’t alone, unfortunately many other people have reached the same stage with dopamine agonists. See recent RLS-UK survey which showed that over 50% of people taking dopamine agonists were showing signs of augmentation.
rls-uk.org/post/rls-uk-surv...
Sue’s excellent advice is the way to gradually come off DAs. Good luck.
It is really good to know that there is help on this website. Thank you.
I honestly think you should send an official complaint to your GP surgery and the RCGP.Any doctor allowing 7mg of Ropinirole for RLS is negligent. Simple.
There have been quite a few people on similarly high doses and they have successfully reduced. See HipHop73.
It took him a year.
Go slowly. At least 6 months.
Read this forum and RLS-UK'S website.
Doctors aren't taught anything about RLS or the dangers of dopamine agonists.
You will need a low dose opioid to help you through the severe RLS that will flare up at each dose reduction.
But get off the poison. You will get your life back.
If you have experienced any impulse spending, gambling or hypersexuality, please see a solicitor asap. There have been hundreds of successful legal actions against UK doctors for failure to warn about Impulse Control Disorder. It is VERY common, especially after years on high doses.
Dopamine agonists are now relegated to 'end of life' scenarios by the American Academy of Sleep Medicine.
The UK will HAVE to take note or face serious legal action in the future.
Yes, I see what you mean about the possibility of future legal action, though I have not been affected by impulse spending etc, not yet anyway. It was in 2008 that I was first prescribed ropinerole so it was possibly before the augmentation was known about? Will keep that in mind though. Thank you.
Augmentation was known about, but not the epidemic that was to come. They assumed it was 'rare'. Now it's clear every single person taking these drugs will experience augmentation at some point. I was on 4mg Ropinirole for over 10 years & went through withdrawal in 2016. I then spent 5 traumatic years on 150mg pregabalin and 25mg Oxycontin but still had severe RLS in the evenings and every night.
I was lucky enough to get Buprenorphine in 2021 & overnight my RLS disappeared.
Once off Ropinirole you can try the alternative meds, but don't waste years on drugs that don't work, like I did.
You will find the right meds that work for you.
Stay strong, don't give up. You WILL get off Ropinirole and find a really suitable med ( or iron treatment) that works for you.
I had no idea that there was so much knowledge and experience around; it is so good to know there are alternatives to ropinerole. Many, many thanks for your encouragement.
You can do this.👍🏻
RLS-UK website has all the treatments set out and medications to avoid.The Ropinirole withdrawal schedule is set out under 'Useful resources'.
Latest films and surveys are also set out.
The AGM is tomorrow in London.
Dr Buchfuhrer has recorded a speech against Dopamine Agonists and Professor Richards is talking about iron infusions.
Do consider joining as a member.
RLS-UK runs this help forum.
I am a member of RLS-UK but obviously it seems that I have not fully explored the website! Thank you for directing me, sounds exactly what I need. Very grateful.
Dopamine agonist withdrawal help
Effect alcohol has on dopamine agonist?
Paper on meds that help DA withdrawal
Pholcodine DA? 
Magnesium and dopamine
