Ropinerole augmentation: I have had RLS... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinerole augmentation

skelley35 profile image
12 Replies

I have had RLS for about 15 years. I am a pathologist and need to sit for a fair amount of my work day. I started DA s 15 years ago and have had to steadily increase dose ultimately to 3.5mg. The med usually was quite effective. Unfortunately over the last 6 months I have developed augmentation to the point that I have trouble sitting still to read slides by 11am. I need to come off the DA. Down to 2.5 mg. I get 3.5 hours max sleep each night. I get to sleep fine but awake after about 3 hours every night. I planned on starting pregabalin and have done so for the past week. I was wondering if I should wait to start any pregabalin (only taken for 4 days) until I am totally off the DA? I do seem to get by at work by fasting until day is done. So basicakky doing an 18 fast daily. It helps my day but nights still suck. As a backdrop my Ferratin is 188. interesting though that is has dropped from 330 steadily over the past 7 years. Any thoughts would be appreciated.

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skelley35
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Madlegs1 profile image
Madlegs1

The Pregabalin won't actually help in withdrawing from the ROP, but it is generally agreed to start taking it about 3 weeks before finally getting off the DA.

You need to follow the protocols for getting off--- slowly and by small increments.

You may need additional pain meds for the final stages. Low dose opioids are generally the best, but some medical people are adverse to prescribing these. Codeine can be an available option.

Good luck.

SueJohnson profile image
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 if needed.

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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the pregabalin, the beginning dose is usually 75 mg pregabalin. (Pregabalin is more expensive than gabapentin in the US.) 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 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.

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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."

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, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, , dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

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 any other health conditions you have.

Cabplus4 profile image
Cabplus4 in reply toSueJohnson

Live in US. Have COPD and heart condition , I take trelegy,Abuterolsulfate,benazepril,Amalopine, Atoavastatin, Citalopram, aspirin, Ropinerole 4mg Thank you for your help my entire life is disrupted by RLS. George Stuart

SueJohnson profile image
SueJohnson in reply toCabplus4

Citalopram makes RLS worse for many. Wellbutrin and trazodone are safe for RLS. Both are good for depression although Wellbutrin is a little bit better. Trazodone also helps anxiety and insomnia.

Amlodipine is a calcium channel blocker and makes RLS worse for many. Your Ace inhibitor benazepril is OK. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Since you are taking an ACE inhibitor your potassium level should be checked as they can raise potassium levels.

Statins make RLS worse for most. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, and then there is Triglide which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Cabplus4 profile image
Cabplus4 in reply toSueJohnson

so very very much

Joolsg profile image
Joolsg

Are you in the UK? Please file an adverse effect report via Yellow Card Scheme if you're in the UK.

As Madlegs says, pregabalin won't help withdrawals.

You need a low dose opioid to settle the increased, very severe RLS at each dose drop. 30mg codeine, 50mg tramadol or 10mg oxycodone.

RLS-UK sets out a withdrawal schedule under 'useful resources'.

Follow SueJohnson advice to get through withdrawal.

And arrange a 2 to 3 week holiday for when you drop the last 0.25mg Ropinirole. You'll get no sleep for around 4 days and will be mentally and physically exhausted.

skelley35 profile image
skelley35

I hear everyone that pregabalin wont work until off of DA but do we have enough information know that it is not helpful at all?

Are there sleep aids over the counter that could aid in sleep during the stopping of DA as so far I can manage daytime but its the nughts that suck.

LotteM profile image
LotteM in reply toskelley35

Common experience! If you engage in reading this forum when you can sleep, you will learn. A lot.

Joolsg profile image
Joolsg in reply toskelley35

I tried everything during withdrawal to stop the severe RLS and lack of sleep.The only thing that actually allowed me to sleep for 30 or 40 minutes was cannabis. With 20% THC.

macramegirl profile image
macramegirl

I too, was on ropinirole, 3mgs. I didn't know about the augmentation until sometime last year. I read about it's augmentation on this forum and decided to wean myself off of ropinirole. Once I was completely off the drug, I started on pregabalin. My RLS which was off the charts all day long and crazy during the night, really changed!I No longer have any daytime RLS and take one 50mg. capsule before bed and sleep through the night.

Cabplus4 profile image
Cabplus4 in reply tomacramegirl

How hard was it to wean yourself off of Ropinerole? And how long did it take?

SueJohnson profile image
SueJohnson

I see you list high blood pressure. Many drugs for that make RLS worse.

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

If taking an ACE inhibitor or an ARB your potassium level should be checked as they can raise potassium levels.

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