I have been on Ropinerol for about 5 years and trying to taper after Increasing the dosage, every year due to earlier leg ache and increased area of pain. When I started it was below my knee and now it’s entire leg.
I was up to 2 mg in January and my new primary care suggested I could cut my pill in half if feeling discomfort. Then I realized I had gone from 2 mg to 3 mg nightly. It’s worked but now getting earlier symptoms in the evening and early morning. With research I found this group. I went to a new GP and have had my Ferittin levels done. It is 39 and % saturation as t 33.
I have started taking iron bisglycinate and vit c at night I am taking magnesium in the am I started to taper down by .25 mg every 2 weeks. Also reducing sugar.
I’m waiting to see a neurologist with some expertise with RLS. I have been educating my GP.
I am at 1 mg ropinerol and need recommendations how to manage from here; short term sleep aides, anything!
I live in Minnesota, USA. This forum has been so helpful. Thank you!!
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Neddieis1
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Congratulations on reducing ropinirole from 3 mg to 1 mg. The usual advice is to reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 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. 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 of gabapentin or pregabalin 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 take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." Since your ferritin is less than 100 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an iron infusion take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. 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 live in the US ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Citalopram can make RLS worse for some. If your need an antidepressant, Wellbutrin and trazodone are safe for RLS. Since you take levothyroxine don't take it within 4 hours of taking iron since it interferes with its absorption.
You're nearly there! Here in the UK we can get 0.5mg Ropinirole pills. I used a pill cutter from Amazon to create 0.25mg pills.Things that helped when the withdrawals were horrendous were 50mg tramadol ( every 4 hours for the first 5 days after stopping last Ropinirole dose) & cannabis. Cannabis was the most helpful. Vaping is the best method.
I also used to lie with my legs upright against the wall and used tight compression socks.
It's a very difficult 2 to 3 weeks of severe, constant RLS but worth it.
Once off Ropinirole, your RLS will settle and you'll realise how severe it was.
As your serum ferritin is so low, you might be someone who can be med free in the future by raising levels above 100, preferably 200.
Would your doctor consider an IV iron infusion? Injectafer is a safe options. It raises levels more quickly than pills.
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