I have suffered with severe RLS for over 30 years. At first with no sign of treatment I used strong pain meds which I regularly took too much of just trying to calm my legs down enough to sleep, that didn’t work. In 2005 I saw a right up in a Sunday news paper about a treatment called adartrel, this medication has the active ingredient of ropinerol. It took month to get hold of this med as it wasn’t then in any med books or computers, when I did get some , I was ecstatic, I actually slept. Over time I managed to reduce to one tablet in the evening. Unfortunately now my doctor has taken me off these tablets and swapped for plain ropinerol which has the side effect of weight gain…not happy about that!! It appears that adartrel is too expensive. A few weeks ago I looked up ropinerol for RLS , there are a lot of different ropinerol tabs, at the bottom of the page in bold it said ‘ ropinerol for RLS : ADARTEL. My RLS has me walking back and to for many night time hours. Unable to sit or lie down for no more than the count of five!!! Often I feel I could chop my legs off, fortunately I’m compass mentoss enough not to do that but Ilmy brain is so desperate for sleep, this can go on for 5 or 6 days or until my body literally konks out. I dream of a medication that works and that my doctor will prescribe. Note : adartrel does not show weight gain as a side effect.
Any help would be gratefully received
Written by
Geniemb
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As Madlegs advises, you are in augmentation.Ropinirole was miraculous for so many of us. Stopped all RLS. Then the top experts in the USA noticed all their patients were getting worse on these drugs.
The drug over excites the D1 receptors and these receptors scream out for their hit of Ropinirole. The RLS becomes more severe, starts earlier and moves to other body parts. It will never settle until you get off them completely.
Reduce by 0.25mg every 2 weeks. When RLS settles, reduce again. You will probably need a low dose opioid to settle withdrawals at each stage.
Replacement meds are pregabalin or gabapentin, but they sometimes don't work if dopamine receptors have been damaged by years on Ropinirole.
Read all posts headed Ropinirole or Pramipexole or RLS getting worse on here. SueJohnson lists all the tests you need and replacement drugs and when and how to take them. The RLS UK website sets out replacement treatment and meds to avoid.
Augmentation is a Daily occurrence on here. Doctors know zero about RLS, augmentation or Replacement drugs so read the Mayo Clinic Algorithm and look at the RLSUK website. If your GP refuses to arrange blood tests or listen to you about augmentation, forward the links below.
The RCGPs refused a RLS UK backed campaign to teach RLS to GPs, saying they would know how to research and deal with the rising number of patients suffering drug induced worsening. This forum proves that this is not the case, so we have to ask them to read the research we supply.
Do NOT let the GP increase the dose or switch you to Pramipexole or the Neupro patch. They will quickly produce the same problem. These drugs are no longer prescribed by experts.
Welcome to the forum. You will find lots of help, support and understanding here. 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 and any other health conditions you have.
Joolsg and Madlegs1 are spot on. To elaborate on what they said.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. The adartrel is just a film coated ropinirole.
Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off ropinirole, 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. If even this is too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. 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.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." 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). 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 at Https://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, eating late at night, estrogen including HRT, 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, fennel, 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, CBD, 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, vibration devices, 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.
I too was put on Adartel after 10 years of RLS and it completely changed my life. Felt I had my life back. I’ve been told by the pharmacy that there’s a manufacturing problem with this brand and they put me onto another brand which does not work the same. I can feel the RLS again at night (plus it seems to be a higher dosage) I’m really hoping this manufacturing problem gets sorted and it’s not a case of the NHS not prescribing it anymore.
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NEW DISASTROUS MED
first time, long time - mind if i just vent a little bit?
Back to the dark, dark nights.
