Getting off Ropinirole for RLS

[Clingonmf]

Does anyone have experience with withdrawing from 2 mg daily of Ropinerole?

[SueJohnson]

Welcome to the forum. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 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. 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 of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. 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 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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...

[Rlssimmbob in reply to SueJohnson]

After 60 years of agonizing RLS with nothing and all sorts of medications. I have had 2 weeks of virtually solid sleep, I have found that 600 mg of gabapentin at @ 7:30 and 2mg. of Ropinirole at 9:30 does the trick. Also in consult with a knowledgeable MJ specialist, I take a few drops of 2:1 CBD and THC if I should wake during the night. NO RLS!. Thanks for your guiding lights. We'll see if I augment.

[Clingonmf in reply to SueJohnson]

Wow, thanks. I'm sorry I've taken so long to reply back. I am very disorganized.

[Fatno in reply to SueJohnson]

Gabapentin & Pregabalin DID NOTHING for me or my Restless Legs except make me feel psychotic, so constipated I needed to be flushed out in the ER & I gained almost 30 pounds. IT IS NOT THE CURE-ALL FOR RLS. I HATE taking Ropinirole, but right now, it's all I have.

[SueJohnson in reply to Fatno]

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

I am so sorry. Unfortunately for a few it can have bad side effects. But for some it does control the symptoms.

Ropinirole is great for awhile. I took it. How much are you taking?

[Fatno in reply to SueJohnson]

I'm currently taking 1mg daily. It works but turns me into a zombie. To make matters worse, I work night shift which makes me even more of a zombie. This RLS has turned my life upside down.

[SueJohnson in reply to Fatno]

Have you thought about getting off ropinirole and taking a low dose opioid?

[Fatno in reply to SueJohnson]

Yes. Seeing my primary doctor May 6 & going to ask for low dose anxiety med to take before bed.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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.

[Fatno in reply to SueJohnson]

I'm starting a low oxalate diet & Multivitamins & mineral water.

[Opie__]

Not quite 2 mg most days but at least 1 1/2 mg each day for a year or so. I started augmenting on Ropinrole about 18 months ago, had taken for 2/3 years. After discovering this web site and realized how bad the meds were I started by stopping the 1/2 mg or more I took during the day. I just walked or stood and watched tv during those episodes. After completely stopping afternoon Ropinrole, I slowly started reducing my 1 mg at night by .25 for two weeks and continued til I was at 0 mg. Up til then, it didn't seem all that hard. I slept less but was ok. Once down to 0mg, it got a lot harder. I had started Gabapentine 900 mg about 4/5 weeks before stopped DA. I didn't take any opioids or other help with withdrawal. Finally when I was 3/4 weeks off the DA, I started sleeping better. I still had to get up during the night to exercise or clean but was able to fall back askeep. I am sleeping pretty well now (most nights 7/8 hours), I did start taking CBD oil with 3% thc recently and it seems to help some. I seldom have RL and it is usually for just a few minutes. I finally got an appointment with a neurologist out of Vanderbilt and he was a lot of help. Good luck and it is worth the sleepless nights to get off DA meds

[Strike26]

Hi - this is not exactly an answer to your question but might help others. I posted before about the effects of Venlafaxine (bad!!) and following the replies decided to talk to my doc about the Pregabalin/Gabapentin alternative to Ropinirole (I am on 6-8mg daily). Before I could do that I stopped taking any Venlafaxine and another antidepressant, Mirtazapine (had a difficult year following the death of my wife).

I needed a repeat for Ropinirole- nowhere in the S.E. had any for 5 days. The RLS went into overdrive to the extent that my left leg, hip and back are now very painful (improving slowly), and I had classic withdrawal symptoms as well. Codeine had no effect whatsoever. I had some Diazepam spare which has marginally helped- not this time.

At the point I got the docs appt the Ropinirole came back in stock. I am taking two (so 4mg) first thing and one late afternoon and the other late evening. Bizarrely, apart from occasional mild RLS and lack of sleeping (always had insomnia),? I have no RLS to speak of. There are no other changes I can put it down to except the antidepressants being stopped. It’s now 3 weeks on and I am re-reading everything on here about antidepressants and RLS!!!

[SueJohnson in reply to Strike26]

You are taking 8 mg of ropinirole which is twice the maximum daily dose. If you need that much you are augmenting and need to come off it.

[Strike26 in reply to SueJohnson]

hi Sue- obviously you are correct about the daily maximum dose in the UK (4mg). I moved to 6mg with my gp’s agreement a year ago (I accidentally took 3 x2mg daily when I was in the midst of a “dry socket “ after a wisdom tooth extraction. The RLS improved quite a bit (from what I measure as extreme to moderate).

I think I mentioned before that I have tried all the main RLS meds before- only Ropinirole had any effect. Then it was the round of mostly antidepressant drugs on top - occasionally it improved symptoms but very short term. I have tried just about everything you and others have listed here (and I thank you in particular for your time and work).

My wife was diagnosed with Stage 4 oesophageal cancer in 2015, died 3 years later and I didn’t “move on” (a phrase I loath) until this year when everything caught up with me and my world imploded. Throughout I had been on antidepressants- I described before what the increase in Venlafaxine did to me.

So recently I stopped the Venlafaxine completely and similarly the other nighttime med. The decision to do that was rational- I was lucky enough to get the help of a very skilled cbt therapist and over the past 5 months with support from a few brilliant close friends i have dealt with a lot (not all) of my mental health problems.

Then, as I described above, the Ropinirole stopped entirely for 5 days. When I got the repeat after 5 days of RLS hell, I did take an immediate double dose (4mg) and two more at 2mg that day. Since then I have taken a total of 8 mg on a few days (as a precaution when I have thought the RLS was imminent) but generally 6mg tds, as per my agreement with my gp.

All I am saying is that for 3 weeks now, apart from the odd low level RLS symptoms, the hell of each day has disappeared- the only additional drugs I take are paracetamol, ironically because the 5 days of extreme RLS have hurt my hip and back.

I wouldn’t dream of disagreeing with your point about augmentation- I am not arrogant or stupid (I hope). All I am saying is the past 3 weeks the one thing that has changed is entirely stopping the antidepressants that I have taken for years (in their different versions). I researched carefully the maximum dose for Ropinirole for PD and am asking the question why if (big IF) 6 or even 8mg works for RLS for some (me) people, and it’s not addictive- I have codeine phosphate prescribed (it does nothing for my RLS) - what is the problem?

Again, I am not arguing with you, and if tomorrow or next week, the RLS starts to return (and based on your and others evidence on this site, that is more likely than not), then I will be straight down to my docs to ask for the Mayo Clinics recommendation to come off Ropinirole and start the new combination drug regime they suggest.

I hope this makes sense- as always, your advice is very much appreciated.

Alex

[Jetto]

I could not handle the withdrawal so I bought a high quality scale.

It was size of a DVD disc. I put the pill on scale on weighed it.

Took a file and filed off a very small amount and weighed it again.

Wrote these numbers in a book, so I could keep lowering it a small amount.

Many times I could not handle the severe RLS from the withdrawal.

And had to go back up a weight or two.

[Brownie1212]

I have been trying for over a year now to get of this damaging drug it's the withdrawal is the problem stopping taking it is easy but no matter how slow you come of the withdrawal will get you first week I am fine then about 8 days I start falling a sleep suddenly and massive fatigue unfortunately there is only do much of this you can take I lasted 6 weeks and had to go back on Ropinoroil and to this day I am still on I am desperate to get of it but here in UK there is no support Hopefully you may be better getting of I have been on this drug 10 years

[TeddiJ in reply to Brownie1212]

So sorry. Order some red vein kratom powder-as tea from kraatje.eu -until you  get things figured out or as a backup for the bad nights. Stops your rls in minutes.