Roprinol and Restless Legs

[BorisMagie]

Hi, I had throat and neck cancer 7 years ago which was treated with radio therapy and chemotherapy, brutal !!. One of the serious side effects I suffered during treatment which lasted 10 weeks, was restless arms and legs. It has settled down to restless legs only and was originally treated with Roprinol 0.5mg. Over last 18 month the dose of Roprinol has increased to 4mg with two paracetamol and two codomol. It helps but my legs start again early morning. Help!!!

[Madlegs1]

Please check out and research "Augmentation".

Either a post on this page or use the search button.

It is a very common occurrence with people in your situation.

Please. Feel free to read any of my rants against medical ignorance in the so called Caring profession.

[SueJohnson]

You are suffering from augmentation which means you have to come off it. You are on the maximum dose.

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.

Since you are suffering now I suggest you add .25 mg and wait until your symptoms settle. However don't be tempted to stay on it as you will augment quickly again

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, Neupro 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 them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

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 ropinirole for several weeks and your symptoms have settled. After that for 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 or magnesium-rich foods, 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 nor calcium-rich foods 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? 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 on the best iron tablets to take and how to take it.

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, low potassium. 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.

[BorisMagie in reply to SueJohnson]

Thank you very much, I am concerned on the amount of Roprinol I am taking and will definitely see the doctor to change as suggested, many thanks again. Gordon

[Zyxx in reply to SueJohnson]

You’re so kind to always be helping people, quite indefatigably.

On a side note: if people can meditate while having RLS (which you mentioned as one of the ways some people get relief), surely they don’t have it very badly? When I have bad RLS attacks there is no way I can keep physically or mentally still. That would just add to the torture.

Thankfully my RLS is a lot less bad than in the past, these days - just wondering how someone can meditate in the midst of physical agitation.

[Joolsg]

Oh Boris. I'm sorry to hear about the cancer & chemotherapy.

But you are Yet another poor soul blindly prescribed these dangerous drugs by an ignorant GP who has never been taught about RLS OR the very common, serious complications of Dopamine Agonists.Join RLS-UK. Start reading the website & you'll see the warning on the first page about dopamine agonists like Ropinirole.

Scroll to 'Useful resources' and start the withdrawal schedule. Print off the page & show to your GP together with the Iron therapy page.

Ask your GP to help you get off the poison he started you on. The least he can do!

Your RLS will NEVER settle unless and until you are completely off Ropinirole.

Just read every post headed Ropinirole or Pramipexole.

As top expert Dr Buchfuhrer says, 95-98% of patients can be completely RLS free with the RIGHT doctor using the RIGHT tools.

Dopamine Agonists are no longer prescribed by any doctor with more than basic knowledge.

Withdrawal is brutal, but there are better drugs available.

You might even find the RLS has settled once you've been off Ropinirole for at least 2 months.

[SueJohnson]

What are you taking for your heart failure as many of those medicines can make RLS worse and I have safe alternatives?