literature to take to GP re; coming off Ropinirole

[Bluejan]

hi all

I’ve had RLS for about 15-20 years and gone through the usual Quinine then amitryptiline in increasing doses to no avail. RLS went from occasional nights to every single night. Eventually begged GP for something else and was px Ropinirole 0.25 on increasing doses up to 1mg. Well the augmentation started after about 6 months or so and I foolishly asked for an increase to 2mg then obviously later on 3mg which I am now still on and suffering every day with early afternoon symptoms until I take the Ropinirole and then go to bed. I had never heard of Augmentation until I joined this site and am now looking at getting off it. I have an appointment with my GP next week and wondered what is the best literature I can take with me as obviously they know nothing about the augmentation. I’d welcome any advice xx

[Joolsg]

The RLS UK website has all the updated info.Scroll to 'useful resources' and it sets out iron therapy and withdrawal schedule.

It also has the Mayo Clinic Algorithm and the new AASM guidance.

And it makes it clear RLS-UK follows these 2 evidence based guidelines.

NHS and NICE guidance is 10 years out of date.

[Bluejan in reply to Joolsg]

Thank you x

[SueJohnson in reply to Joolsg]

I was looking at the RLS UK website recently under useful resources and couldn't find the Withdrawal Schedule although I was able to find it before. Also where on the site is the AASM guidance?

[Joolsg in reply to SueJohnson]

rls-uk.org/useful-resources... down to Iron therapy- then withdrawal.

And you're correct the AASM is on RLS-UK Insta and Twitter sites.

[SueJohnson in reply to Joolsg]

Ahh thank you!

[Joolsg]

Bluejan,I notice from your bio that you were negligently prescribed quinine and Amitriptyline.

Did your doctor take full iron panel blood tests before prescribing these 2 drugs?

Amitriptyline actually triggers RLS for around 99% of patients. Neurologists and GPs mistake RLS for nerve pain.

Have you experienced any Impulse Control Disorders? Spending, gambling, overeating, hypersexuality? Very, very common on dopamine agonists which are now relegated to 'end of life scenarios' by experts under AASM guidance.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

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. 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 you are off ropinirole for several weeks 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.

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.

You can print out the appropriate sections in the Mayo Algorithm to show to your doctor.