I have been on these tablets for many years with the doctors not taking me seriously and just giving repeat prescriptions. I am on 3x2mg evening and 0.5mg during the day as and when.My rl are getting worse. At one stage the doctor said lets try gabapentin but you have to stop taking ropinirole for a week first. This i couldnt do as couldnt sleep and my rl lasted 24 hours a day so went back to ropinirole.
I have not ling moved and my doctor is trying to help and actually reading about rls. She has cut my dosage down to 4mg per day which is difficult but am sticking to it. She has now introduced gabapentin, 1 tab in the evening then after 3 days 1 morning and one evening whilst still taking the ropinitole.
She is the first doctor after many years who has taken an interest so am hoping it will get eadier......
I am constantly tired. My legs can vary from one leg to both and at any time of day or night but also get it in my arms. I find it very embarassing when i am out with friends when i have to get up and walk around and cant go to the theatre etc as cant sit still for that long.
When i take my tabs in the evening they act as a sleeping tablet as i 'drop off' quite quickly and have been known to fall asleep in middle of a phone conversation. But after a couple of hours i am awake!
Am not suicidal but i cry a lot because it drags me down.
Along with this i have to take tablets for haitus hernia and have had 2 hip replacements so take pain relief for this!
I know my friends are fully aware of my rls but they dont understand how bad it is affecting me.
I am lucky that i am retired and can sleep when my legs are calm but i feel my life isnt enjoyable but feel trapped.
Written by
Reenag06
To view profiles and participate in discussions please or .
You were advised to look at my advice 3 months ago but I guess you didn't. Your doctor is not giving you good advice so I will repeat what I said then.
You are suffering from augmentation and yes as a result you need to come off ropinirole but not the way your doctor has advised.
Go back up to what ever dose of ropinirole stops the new symptoms which is probably back to 6 mg. Wait until your symptoms settle for a few days. then:
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so 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. 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.
There is absolutely no reason to take gabapentin now because it won't have any effect while you are on ropinirole. So I would stop taking it. The beginning dose is usually 300 mg gabapentin [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 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.
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 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 According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
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, low potassium. 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.
If you didn't listen to Sue 3 months ago, PLEASE do so now.
You may not like what she has to say, but she is absolutely on the button.
The really great thing is that your doctor is prepared to listen and learn.
Do show her Sue's reply. ( Maybe leave out her comment about the doctor first ?😅)
You have a difficult road ahead of you, and you are not the first to travel along it, but at the end ,you will meet many happy survivors, who have heeded the advice on this site, and are leading full and contented lives.
You can be one of those, as well.
Just make up your mind to go for it.
COMMIT TO THE PROGRAMME.
Best wishes--- and be seeing you on the other side.
Everyone advised you what to do 3 months ago.I know it's hard to accept that your UK doctors are wrong and have treated you negligently, but they HAVE.
You actually have a good case for negligence/breach of duty.
You have 3 years from when we told you what the problem was 3 months ago to sue your medical team.
There's ZERO point adding gabapentin until you reduce Ropinirole completely and raise your serum ferritin above 200ųg/L. And gabapentin should be taken at night. The RLSUK website sets out how to take it. Ask this new GP to read it.
Keep reducing. It's hard but you will continue to suffer horribly until you get off Ropinirole completely.
RLS-UK sets out Iron therapy and the withdrawal schedule on the website under 'useful resources'.
I am so sorry that you are suffering so.and my 1st thought is does this doctor have experience with RLS? I take: Ropinirole 0.5, 2 in AM, 2 late afternoon & 4 at bedtime. In addition I take Tizanidine 2mg, 3 times a day.That is for my RLS & it “usually” works. But, for pain NOT RLS I take Gabapentin 30 mg. 2 tabs 3 times a day.. Not knowing what medication is available in your country I suggest to do your own research.. Use your mass media on your computer, Type in RLS or the name of your medication. You are needlessly suffering and if your primary care does nothing for you? Find a doctor that will!And, you don’t have to do this alone. Ask a friend to help you.You can do this! 🐺🐺
i think the issue is the so called medical professionals tell us that they know best and even Prof L at guys has said that no way could i augment at that low dose of neupro . Lo and behold on 1mg i am augmenting. I went to a psychiatric hospital in october and they couldn’t get the Nepro patches in and i managed 3 days cold turkey while i completely and utterly lost my mind. When they finally got them - i of course put one on . I no longer trust any professors or consultants anymore as they haven’t a clue . We are the experts here . So last night i started cutting one 8th of the patch (thought lets go slow ) and i’ve had RLS all day 😢. Thing is quite often my patch falls off in the morning and i go all day without an issue . That said- i also forget that one is on and stick another on at night to find the night after that - i have 2 stuck to my arse cheek! But i’m pretty sure that Neupro only lasts 24 hrs anyway . so that sneaky clinging on patch won’t have worked (i hope ). But the rls could also be low iron (my HB is only 50 ) low folate , (it’s in its boots) low magnesium (yes also in its boots as i’m scared to eat anything that might set this dignitas heading willis Ekbomb of an arse off. In addition i’ve decided to start weaning my antidepressants as that is problem making it worse and the drug service are pressuring me to reduce the buprenorphine 😢 so i’ve cut 2mg of that off too. But in all honesty im now going to fight back. I’m going to do one at a time and the buprenorphine last . My fear is that i wont ever be able to take the one thing that works (the buprenorphine ) as they have said that they dont prescribe for rls and im not an addict (but i was all because of RLS) . The reason why i have to keep going on to the psychiatric ward is because i get suicidal from RLS 😢. Im loosing the fight . I am 44 years old and a loving mum and was a nurse . But i honestly cannot take anymore . i wish that healthcare professionals would actually help us instead of saying they know best (which they don’t) . A patient i spoke to today said that she cured her RLS with keto. so that will be me on that bandwagon . How do i remain positive about the future when i dread getting older with this disease. ? so i completely feel you and i understand why maybe you didn’t heed the advice of sue and joolsg last time , because the doctors make out they know much better then us . But i 10000% know that the people here know more than 1 million doctors put together . As RLS we are the poor relative of conditions - it’s not important . (BTW i was put on the rotigotine patch by Prof W at Queens square . for months i didn’t take it because i told him i was scared of augmentation and he told me that it was such a small dose he promised i would not . so DO NOT believe any Doctor or professor if they try to out u on Dopamine agonists as because in addition to augmenting , i now have an addiction to opioids trying to control this b*** disease and a spending habit ending in 30 k of debt 😢. Sending love to you
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 and gabapentin but still in pain with rls
Taking Gabapentin and Ropinirole 
Getting off Ropinirole 
gabapentin and Ropinirole 
