trying to come off ropinole

[Myteamo]

hello everyone, I have RLS ,have been taking Ropinole for 4 years and my symptoms are worse than before. Im trying to reduce dosage ..but it’s so difficult. Some nights it feels almost u bearable and I would give anything to stop it. I’ve reduced the dose my Half most days. I need some thing to help when RLS is at its worse.. would an over the counter sleep aid help …

[SueJohnson]

I assume you realize you are augmenting. You are probably trying to reduce too fast. 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. 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. 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 (it is OK with pregabalin) as it will interfere with the absorption of it 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." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. 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...

[SueJohnson]

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.

[SueJohnson]

No an OTC sleep aid will not help and can make it worse. You can ask for a prescription medicine but it may not help much. The best prescription medicines are Ambien and Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.

[Joolsg]

As Sue advises, slow down if the withdrawal symptoms become unbearable.Ask your GP to report the augmentation via Yellow Card scheme so the medical profession are aware how common this is. See the pinned post at the top of the page.

You should also ask your GP for help getting through withdrawal which is often more difficult than heroin withdrawal.

Most people need a low dose opioid like codeine, tramadol, oxycodone, or oral morphine to settle the severe withdrawal, when RLS becomes extremely severe.

Medical cannabis also helps, but is only available via private clinics in the UK. It costs £45 for consultation, then the clinic review your GP records and issue a prescription which is sent via a private clinic. For Ropinirole withdrawal, flower cannabis is best. It needs to be ground up with a grinder ( buy on Amazon) and then vaped through a vape pen or cooling vape tower. It relieves symptoms almost straight away for a few hours, allowing you to sleep.

During withdrawal, you should try to rest and sleep whenever you can. Day or night. Sleep hygiene does NOT work.

Follow Sue's advice about iron and ask your GP to look at the RLSUK website which has links to the Mayo Clinic Algorithm for best treatment and a medication table to see medications to replace Ropinirole and the timing of doses.

It is hellish, but most people on this site have been through it and are in a better situation once they get off Ropinirole. The severity of RLS reduces and, if you find the right meds for you, settles completely.

As the top RLS expert, Dr Buchfuhrer, says, 97% of RLS patients can be symptom free with the right medication after augmentation on Dopamine agonists like Ropinirole.

If pregabalin and gabapentin do not settle your RLS after 2 months, come back on this site for further suggestions.

yellowcard.mhra.gov.uk/

rls-uk.org/medical-treatments

[4inthemorning]

I came off taking 3 mg ropinirol after nine years back in February. There’s all kinds of advice about how to do it as far as timeline and other drugs to make taper a little easier. I did it in three weeks employing guidance from Johns Hopkins which leverages all of their history and data points to doing it quicker and shorter vs dragging it out over a long period of time. After the three weeks I then spent two weeks taking nothing, and my symptoms came way way down to a much more manageable level. That allows other treatments like gabapentin Lyrica, or even low-dose oxycodone the latter of which I’m using successfully. This demonstrated to me that augmentation is a very real thing and until you are off a dopamine agonist you really can’t tell just how much it has increased RLS symptoms.