RLS severe

[GlamMa50]

I'm been dealing with this for years an the Drs don't know what to prescribe me I need help I take reqip 3 mg an Meloxicam 2 mg but it doesn't really help I'm up all night what can I do

[SueJohnson]

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

It sounds like you are augmenting from the requip and need to come off it.

First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off ropinirole also known as requip, 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 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 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 it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls 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 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 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, 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). 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 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

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.

[SueJohnson]

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.

In your case the "have to increase your dose to get relief" is the sign you are augmenting because the 3 mg "doesn't really help".

[Joolsg]

Welcome to the forum. Can you please complete your bio so we can guide you better? Set out your age, where you are, all medications you are currently taking and for how long?SueJohnson has given you excellent advice.

Every day we get at least 2 new people joining because their RLS is much worse. They're nearly always on a dopamine agonist ( Ropinirole, Pramipexole or Neupro patch) and they are usually experiencing drug induced worsening, known as Augmentation.

The top experts are now clear that everyone taking these drugs WILL suffer Augmentation, and the ONLY solution is to get off them.

So follow SueJohnson advice and start reducing today.

You will probably need a low dose opioid to settle the withdrawals at each reduction and you should start pregabalin or gabapentin around 4 weeks before the last dose of requip.

Ask your doctor to arrange full iron panel tests asap as raising serum ferritin above 100ųg, preferably 200ųg/L can help reduce some of the withdrawals and once off requip, may settle the RLS without the need for replacement meds.

Read and learn all you can. Start with the Mayo Clinic Algorithm, which sets out best treatment for RLS.

mayoclinicproceedings.org/a...