Ropinirole withdrawal

[Mikamydog]

Hi all, newbie here. I was prescribed Ropinirole about 6 months ago, in May my ankles started to swell and got burning sensation in my feet. Saw GP again and he said it is probably diabetic neuropathy but my sugars are well controlled, anyway he put me on amitriptyline. Either of these meds was making me vomit during night. So I came off the amitriptyline couple of weeks ago. I started to reduce the ropinirole down to 1.5 tabs for 2 and intended to reduce very slowly. But was at GP due to vomiting problem and she said just stop them you dont have to reduce. For past 2 nights I have hardly slept. How long does the withdrawal last? I had intended not to take anything as nothing was working anyway. I have appt in couple of weeks to check Iron levels as they are at 60 couple of months ago and this GP thinks that is too low so she wants them checked again. Anyway that is my story and upside I have made a black bean chilli while awake

[SueJohnson]

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

The doctor is wrong and shouldn't have had you stop cold turkey. The usual advice is to reduce by .25 mg every 2 weeks and wait until the symptoms settle before reducing again. And one may have to reduce slower or by a lesser amount. Then near the end when the symptoms become more severe a low dose opioid is often prescribed temporarily to help with the symptoms.

You have a choice. You can go back up to the dose that worked for you wait a day or two and then reduce as I described. Or you can tough it out, probably not sleeping for a week or two.

Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It 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. On the gabapentin or pregabalin, 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 divide the doses on 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. 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 of pregabalin) daily." 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). 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 atHttps://mayoclinicproceedings.org/a...

[SueJohnson]

I'm assuming the 60 you mentioned is your ferritin level. Your doctor is right about that. 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. take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin.

Even better if you can get an iron infusion that will raise your ferritin faster and help with your coming off ropinirole, but it can be hard to get. If you do get one, get ask for a new blood test after 8 weeks.

Ask for a new blood test after 3 months. When you do stop taking any iron supplements 48 hours including in any multivitamin before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.

[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, eating late at night, 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, 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.

[Mikamydog in reply to SueJohnson]

Hi Sue thank you so much for all that information, I will be phoning GP on Monday to either get something to help. I had reduced the ropinorole on my own down to 1.5 tabs but my script was unable to be fulfilled as there is a problem with ropinirole and they said it was not available until jan 2024!!? So GP will have to prescribe something different, fortunately I am retired and can go back to bed. Last two nights I tried to get to sleep for 4 hours, eventually got up at 1.30am and went back to bed at 3.30am and slept until 9am, so at least I am not so bad as some people on here. But something that started as mild occassional RLS has been exacerbated by either the ropinirol or amitryptline or both. What a great forum and yes I probably do mean ferritin levels at 60. I have ordered the iron bisglycinate but I assume I don't take that until my bloods are rechecked a week on Tuesday to confirm levels, think she is also doing magnesium/calcium/potassium? I will find out for sure next Tuesday when health care assistant takes my bloods

[SueJohnson in reply to Mikamydog]

You can switch to pramipexole. The equivalent dose to 1.5 mg of ropinirole if that is what you meant is 3 of the .088 tablets. You don't need to wait for the test to start the iron. It is extremely unlikely it increased to over 100 from 60.

[Mikamydog in reply to SueJohnson]

I was thinking trying to tough it out with the ropinirole and getting gabapentin from GP, but I didn't realise pramipexole was an alternative

[SueJohnson in reply to Mikamydog]

If you still need an antidepressant in place of the amitriptyline , the only safe one available in the UK is trazodone. It also treats insomnia and anxiety.

[Mikamydog in reply to SueJohnson]

the amitriptyline was prescribed for what they thought was diabetic neuropathy I am very sceptical about that diagnosis as I now think the ropinirole was causing the burning sensations in my feet as my blood sugars are very well controlled and diabetic nurse is delighted with as I am in remission with weight reduction and diet and 1 metformin per day

[Joolsg]

SueJohnson has given you great advice.If I were you I would tough it out now you're off Ropinirole. The first 4 days are the worst, but you managed sleep.

Stay away from Ropinirole, Pramipexole or the Neupro patch. They are no longer prescribed by experts.

Amitriptyline should not have been prescribed as it triggers/worsens RLS.

Raising serum ferritin above 100, preferably 200 may resolve your RLS completely.

Iron infusions work better and more quickly and several UK hospitals are now doing them for RLS.

[Mikamydog in reply to Joolsg]

thank you for your advice and reassurance, I will try to be prepared for a week or so of withdrawal and as you say I did manage to sleep after 4am and am retired so can sleep on if I like. Yes the amitriptyline and or ropinirole definitely made it worse and the amitriptyline was prescribed because I had burning in my feet after being on ropinirole for 3 months and now I think this is what caused the burning sensation in my feet and swollen ankles. The GP though I had diabetic neuropathy but bloods have always been well controlled and I am actually in remission for type 2 and the nurse is really happy with me on that score, wish I had just put up with the mild RLS I suffered previously although it had started to occur more frequently over the years

[Joolsg in reply to Mikamydog]

Meds should be last resort after iron pills/ infusions and eliminating trigger meds like Amitriptyline or sedating anti histamines/statins/beta blockers.I hope you can reduce RLS by increasing your iron.

If the RLS is still problematic after raising serum ferritin, then you could discuss pregabalin.

[Mikamydog]

ah I am on simvastatin hmm, but they say I cannot come off that as family have history of high cholesterol, I did come off once when I first put my diabetes in remission and when I had my bloods taken after 6 months, the nurse couldnt understand why my sugar had dropped but my cholesterol had rised by quite a bit and this is despite my diet being really good, she said it was familial, so not sure I can stop that. The only meds I am taking at moment is 1 metformin and 1 simvastatin

[SueJohnson in reply to Mikamydog]

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. 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.

[Mikamydog in reply to SueJohnson]

Thanks will look into these alternatives, I am vegan already so doing all I can to help alleviate it

[Baldrick123]

I was on Atorvastatin and stopped taking it after my own research led me to believe that statins are vastly overprescribed and virtually useless. The cholesterol link to heart disease is very exaggerated. The Mediterranean diet is pretty high in cholesterol and yet Mediterranean people tend to live long and healthy lives. There is a huge problem in Western medicine in that pharmaceutical companies pretty much drive health care policy for their own profits and getting everyone over 50 on statins is pure profiteering.

[Mikamydog]

I would like to thank you all for your advice and help over past couple of days and I am happy to report the withdrawal symptoms have stopped and I have got through the worst of it. I slept last night with only occassional twinges, the burning in my feet has totally gone, this is what the GP said was diabetic neuropathy and that was why he put me on amitriptyline which I stopped a few weeks back. I took 2 iboprufen last night and maybe they helped? Anyway I am one of the lucky ones as I see a lot of distressing stories on here and I hope people find a way but they are sure on the right forum, thank you again

[SueJohnson in reply to Mikamydog]

That's great ! So pleased for you.