I would like advice on how best to manage the sleepless nights as I try to wean myself off ropinirole which I’ve been taking in gradually increased amounts for about 6 years up to 3mg this year. I believe that I had the augmentation problem after a GP increased my dose over the max of 4 to 6 mg for RLS a few weeks ago. Since then I’ve tried to reduce the dosage and I’m currently trying to take no more than 2mg a day. This is difficult due to the increased symptoms both day and night.
My GP this week wants me to reduce to 1mg a night for a week and then 1mg every other night next week. She has also prescribed 100mg tablets of Gabapentin to be taken up to 3 doses a day. I don’t think I can cope with the loss of sleep if I reduce the ropinirole this quickly and the gabapentine doesn’t seem to help. Any suggestions?
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Seakale
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Welcome to the forum. You will find lots of help, support and understanding here.
You and your doctor are trying to wean off the drug way, way too fast.
Go back up to a dose that controls your symptoms, even if that is 6 mg, and let your symptoms settle for a couple nights.
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 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 but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls the beginning dose is 100 mg ] Normally you would 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, 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 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, 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 what country you live in and your gender.
You may need a new doctor if s/he objects to this rate of reduction. If so if your tell me the city and country you live in I may be able to provide you with a knowledgeable doctor.
Thank you for your advice. I’m male and I live in South-west Wales, UK, so finding an experienced specialist in my area may not be easy but I’m willing to travel up to 100 miles (eg Cardiff). My other concern is whether taking Gabapentin is the better of two evils as that has potential side effects and can be difficult to stop.
You are in luck. Dr Jose Thomas at the Gwent sleep clinic. He does private work out of Spire Hospital in Cardiff. He is one of the most knowlegeable doctors in all of the UK. And you would probably only have to see him once and he will probably do telehealth after that. You may have to see him privately as there may be a long wait otherwise.
Gabapentin is easy to stop. If you reduce it by 100 to 200 mg every two weeks you sould have No withdrawal symptoms unlike a DA.
Thank you for that recommendation. I’ve just contacted Dr Thomas to arrange a private appointment and won’t try to reduce my ropinirole dose before then.
Yet another UK GP with zero knowledge.Direct GP to RLS-UK website, useful resources.
The withdrawal schedule is set out AND the iron therapy printable sheet.
Gabapentin won't help withdrawal symptoms, but will start to help RLS about 3 weeks after you have stopped Ropinirole completely. And gabapentin should be taken at night ONLY for RLS, in split 600mg doses 2 hours apart.
Most of us need a low dose opioid to get through Ropinirole withdrawal.
Stay strong and keep going.
And please complete the RLS-UK survey I posted. RLS-UK are trying to get RLS taught to doctors in the UK.
Thanks for your support. I’ve completed the survey. I’ve also been back to my surgery and seen a different GP, armed with the RLS info on how to come off ropinirole plus the info an iron therapy. He was willing to listen and agree to a slower withdrawal regime. My serum ferritin level was just 35 I discovered when I asked for a copy of my test results from June this year, so I asked about an iron supplement. He has put me on a low dose of Ferrous fumarate but I will ask about having a transfusion when I see Dr Thomas next month as that seems to be recommended to bring my iron levels up quickly.
Until you get the transfusion, these are the instructions for taking iron.
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months or id you get an infusion after 8 weeks.
When I tried to come off the juice , ended up doing 30km bike rides at 2am must of looked a bit odd to the neighbours lol . Any way im back on it but half the dose it works for some and not for others good luck
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