RLS Augmentation: 1) How to know if its Augmentation? 2) How to titrate off the drugs?

[FigureItOut]

Presently I am 70 years old and have had RLS virtually every night for the past 7 years. I have learned much from the kindhearted experts in this chat room. Needless to say as all with this condition understand it's been unbearable so trying to make adjustments.

Nightly I am taking: Gabapentin 300mg, Ropinirole 1 mg and Clonazepam .5 mg.

Last year I learned Ropinirole is no longer prescribed (see John Winkelman PhD video. neurologylive.com/view/crit...

It is not clear to me if I am Augmenting or not. My question is twofold:

Q1 - Is there a way to determine whether the RLS is caused from Augmentation? I don't know if my condition is getting worse due to age, diet, etc, or it is Augmentation from the Ropinirole (Dopamine Agonist)?

Q2 - Would it be best to first Titrate down the Clonazepam (Benzodiazepine), or the Ropinirole? Or reduce them both proportionally at the same rate?

Any thoughts would be much appreciated.

[Joolsg]

I you've had RLS virtually every night for the last 7 years, I would bet all my money on Ropinirole. Why are you on gabapentin and clonazepam as well? Presumably Ropinirole stopped working and your doctor decided to add them?

That never works. Once Ropinirole turns on you, and it ALWAYS does, you have to get off it very Slowly.

Switch to slow release Ropinirole and then reduce by 0.25mg every 2 weeks.

Read every response by SueJohnson to any post in the last 3 weeks to see what else you have to do.

Gabapentin and clonazepam added to Ropinirole are a waste of time when augmentation hits. But, as you've been on them a while, stay on them until you've withdrawn from Ropinirole.

You need full panel, morning, fasting blood tests and raise serum ferritin above 100ųg, preferably 200ųg/L via pills every other day or an iron infusion.

I'm 64, was on Ropinirole for around 10 years and was told the usual lies by my old GP that RLS worsens with age etc. But guess what? I'm off Ropinirole, after ignoring her advice, and the advice of the UK 'top' expert and following the advice on here. I have had zero RLS, night or day for over 3 years on 0.4mg Buprenorphine.

So, start reducing Ropinirole. Then you can start slowly reducing clonazepam once off Ropinirole and through withdrawal.

Gabapentin only works for RLS once you're completely OFF Ropinirole. It may not cover your RLS though, as Ropinirole can cause permanent damage.

You will probably need a low dose opioid to settle severe withdrawals at each dose reduction.

So find a knowledgeable doctor, join rls.org and keep us updated.

[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.

Whether or not you are augmenting, it is best to get off ropinirole. 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 (pramipexole) because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg tablet) 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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (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? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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...

My doctor had me wean off ropinirole and clonazepam at the same time, but most people did it separately. If so I would wean off ropinirole first.

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, 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, C, 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.