Hi all, I’ve just joined this forum. Thank you all from a desperate woman! I’m currently taking 0.5mg of ropinirole every night. I was on a higher dose of Pramipexole - I tried to come off it without understanding the withdrawal effects. After two weeks of no sleep at all I was broken went to the gp and she prescribed me Ropinirole. My legs are a bit better although still not great. I think I’m on quite a low dose but I feel dizzy a lot especially after eating. Has anyone else had this?!
After reading a lot of these posts I feel I should come off the ropinirole anyway. Maybe I’ll use the dizziness as an excuse to get the Pregabalin - I asked for this instead of ropinirole but was refused it. My GP has no understanding of the condition. I am currently taking B12, iron tablets and magnesium.
If was to come off the ropinirole do I half the dose for 2 weeks start taking the pregabalin for 3 weeks then stop the ropinirole altogether. I’ll need to tell my gp what I want to do because she won’t know.
Thanks all!
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LunaWise
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RLS-UK website has it all set out. And they state that dopamine agonists shouldn't be prescribed.You'll still be experiencing severe withdrawals from stopping Pramipexole and switching to Ropinirole.
Also, NICE guidance DOES recommend pregabalin on an equal footing with dopamine agonists so your GP needs to read the guidance set out for GPs, even though some of it is outdated.
Reduce by 0.25mg every 2 weeks. Show GP the withdrawal schedule on RLS-UK website and ask for 30mg codeine or 50mg tramadol or 10mg oxycodone to help settle withdrawals.
Also show her the iron therapy sheet.
Scroll down to Useful resources - withdrawal and iron therapy.
Welcome to the forum. You will find lots of help, support and understanding here.
I agree 100% with Joolsg but let me lay it all out and add some information that is not on the RLS-UK website.
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 if needed.
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.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin are. (Pregabalin is more expensive than gabapentin in the US.)
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 it for several weeks. 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 1-2 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, 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 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? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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 nor refused pregabalin 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
If your doctor still refuses to give you pregabalin or gabapentin then you need a new doctor. If you can tell us what city and country you live in we might be able to give you the name of a knowledgeable doctor.
Dr Christopher Murphy - Consultant Neurologist . Runs a Sleep Clinic. Alexandra Hospital, Mill Lane, Cheadle SK82PX. Appointments phone 0161 495 7000 However you must be very firm and tell him you want off the ropinirole and not let him prescribe the Neupro Patch which he incorrectly thinks is not as likely to cause augmentation but it is a DA and it does. Otherwise he is excellent.
I found this blessed website and these unbelievably wonderful people maybe 5-6 months ago. I too was on pramipexole, and the Mayo Clinic Algorithm had JUST been released. I was having horrible augmentation - ie. severe refractory RLS CAUSED BY being on the dopamine agonist for 25 years. Sue Johnson, Jools and several other amazing people here walked me through the weaning off of the pramipexole and transition to the gabapentin. It was a brutal transition for me personally because I tried to do it too fast and it caused the final phase to go badly. It was one of the best things I ever did! Not the speed at which I did it but the switch. I didn't have the option of the other meds to aide in the transition. That wasn't yet in play but life without kicking is heaven. I was so afraid I'd have problems with the gabapentin. I don't. Trust me, you want to get off the DA's and switch to the opioids that works best for you. They work SO much better. The people here were there every moment of my turbulent ride and I will be forever grateful to them. They gave fantastic advice and support. Their information helped me provide my GP with the information he needed to help me. The people here will guide you safely onto a better life with this disorder. You're in good hands. Best wishes.
I was initially prescribed Pramipexole which was good to start with but I augmented after a couple of years. My GP then prescribed Pregablin which was only partially sucessful in treating symptoms of RLS. The Pregablin had to be ceased as it made me feel light headed and 'spacey' in the head so much that I had to stop taking the drug. I am now taking CBD oil, two to three drops twice daily and it has significantly been successful in treating symptoms by probably 80%. I hope you find a succesful treatment, good luck.
Sorry, but I have not had any experience with Ropinirole. I take Pramipexole and am suffering from worsening RLS. I wish I could help you, but I am still dealing with RLS myself. I wish you luck with everything.
The pramipexole is a dopamine agonist. I fear that it will continue to worsen on it. I was on it for 25 years. It's now known to not be the right medication for RLS. Do you have a doctor who will work with you? There are several alternatives to DA's now. They work so much better. Please consider the alternative treatments. There are even protocols to help you wean off the DA's with less side effects. If you have the success I have, you'll be very, very happy you did it.
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