Hi, I have had mild RLS now and again for many years but coped ok. In Jan 2023 the Dr started me on 5mg Amlodipine for HP and since then my RLS went every night and severe. June 23 went dr and they said there was no connection. Had bloods and Ferritin level 23 ug/L so had a course of iron tablet and in Oct levels went to 54 which the Dr said was normal so stopped them and said she would speak to a neurologist. In April 24 I was put on 250 microgram of Ropinirole and told to increase in 2 weeks which I did. After a month I needed to increase to 750 micrograms. I saw a Neurologist in July 24 and told him, yes I’m sleeping after taking them at 9pm but I now have symptoms in the day now. He told me to take 250 microgram in the morning as well and told me I could take up to 4 mg a day. I decided to take 250micrograms at 6pm to get me to 9pm when I take 750micrograms… I now wake up 4am with RLS and have it all day .. I decided yesterday I’m coming off Ropinirole so dropped the 250microgram at 6pm and kept busy until I took the 750 at 9pm. Well, I don’t think I slept and then legs started 4am. I went for a walk around the house and some stretches and took 2 co-codamols and then managed 2 hrs sleep. I’m so sorry for rambling on but I’m hoping someone can advice me where to go from here 😊
Ropinirole : Hi, I have had mild RLS... - Restless Legs Syn...
Ropinirole
Welcome to the forum. You will find lots of help, support and understanding here.
Your ferritin is normal for others but not normal for those of us with RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) 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. Also take Lactobacillus plantarum 299v as it also 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 as more is absorbed that way, 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 (or magnesium rich foods), calcium (or calcium rich foods) 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. 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. Ask for a new blood test after 3 months.
You are suffering from augmentation from the ropinirole and are smart to get off it.
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.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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, Neupro 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 them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the 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 ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks 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 or magnesium-rich foods, 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 nor calcium-rich foods 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)."
If that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Amlodipine makes RLS worse as you found out. 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. Discuss these with your doctor including side effects. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thank you for replying. I knew there was a connection with Amlodipine, I will try and get to see the Dr. The only other medication I’m on is HRT Oestrogel, I have been on this for 12yrs.
Unfortunately that is another one that can make RLS worse.
Oh good god. When will the medical ignorance and negligence stop?If UK doctors were taught the basics you wouldn't be in this position.
So many red flags!
Your GP is totally wrong about amlopidine and your serum ferritin was way too low for RLS.
If you had been treated properly by safely substituting a better HBP med and if you had continued with iron therapy until serum ferritin was above 100ųg/L preferably 200ug/L you would probably never have required medication.
And then a neurologist has caused augmentation through his lack of knowledge! He should NEVER have prescribed Ropinirole.
Augmentation has been known about for decades. Top experts stopped prescribing dopamine agonists a long time ago.
The UK is at least a decade behind the top advice.
So, your only salvation is to research and learn all you can about the best and latest treatments and ignore the poor advice you've received so far from your UK GP and neurologist.
Raise your serum ferritin by restarting iron pills or consider an IV iron infusion privately. A private infusion costs about £800 . Some members report improvements by taking ferrous bisglycinate pills last thing at night, but that doesn't work for everyone.
Start reducing Ropinirole NOW by 0.25mg normal release pills every 2 weeks. Show your GP the withdrawal schedule and iron therapy schedule as set out on the RLS-UK website. Scroll down to Iron therapy and withdrawal schedule.
Go slowly and ask for a low dose opioid to settle the severe withdrawals at each drop in dosage.
Your ally is the RLS-UK website which now advises against Dopamine Agonists and the Mayo Clinic Algorithm.
Here are the links.
You also need to fill out adverse drug reaction on the Yellow Card Scheme to prevent Doctors damaging other patients.
bnf.nice.org.uk/medicines-g...
Thank you so much for the advice. I’ve been constantly talking to friends and family hoping someone would understand and help me but unless u suffer yourself then you don’t really know what it is like. Can I go to a pharmacist and see if they would sell me ferritin or will I need to try and get into the Drs ?
You can buy ferrous bisglycinate (gentle iron) at any pharmacy or Holland & Barrett.As you only started Ropinirole in April '24 you may not have a brutal withdrawal. But get off it now before it permanently damages your dopamine receptors.
RLS-UK is trying to get the medical profession to learn about RLS, but it's an uphill battle.
Went to the pharmacy today and explained why I needed to increase my iron levels. She gave me Ferrous Fumarate 322mg. She said to take 1 hr before food or 2 hrs after with orange juice.
Feeling positive about getting off Ropinirole 😊
Studies show that taking once every other day increases levels faster and avoids stomach issues.Good luck getting off Ropinirole.
I went drs this morning. I told her i had started weaning off Ropinirole. She said it doesn’t suit everyone and there’s not a lot else they can give me. She agreed to give me Codeine 15mg for 1 month. I asked about my iron levels, she said they are normal and to eat Spinach. Then I asked about Amlodipine, she said we can discuss it next month 🤔
Well why am I not surprised???15mg codeine will take the edge off a little.
I suggest you use your phone to video the withdrawals. Doctors have ZERO idea how relentless and hellish they can be.
There is something you can use if it gets really bad and you're desperate. Kratom, red vein borneo powder, from
Kraatje.eu
It's now illegal in the UK since 2017, but many use it to get off dopamine agonists because it works.
The Dutch company send it quickly and discretely as 'Moringa herbal tea'.
Another possibility is medical cannabis. I used it in 2016 to get off 4mg Ropinirole. It doesn't stop RLS but it knocked me out after 4 days of zero rest/sleep.
And your GP needs to look at NHS and NICE guidance. Both mention pregabalin and gabapentin.
Also, Targinact, a combination of Oxycontin and naloxone is licensed for RLS in the UK.
So iron infusions help the majority.
If raising serum ferritin doesn't help once off Ropinirole, the GP should prescribe pregabalin!
In fact she should be prescribing pregabalin ready for you to start 4 weeks before your last dose of Ropinirole.
She needs to read RLS-UK website as her bedtime reading.
I whole-heartedly agree with what Joolsg has said above.What a horrible thing to do - when you were already starting to get symptoms of rls earlier in the evening, we know on here that yes, a Huge Red Flag of augmentation - then to recommend a dose in the morning as well !
Oh WE know it is 'criminal' - I do hope that you can prove that legally (if you do go down that route) - I would expect the defense to be that it is: 'accepted practice'..
Yes your ferritin seems too low. I can't get my head around your doctor stopping your Iron...that's really only a concern if you have iron overload/haemochromatosis, tbh. And then having to come up with such a large amount of money for an iron transfusion !, a help to many, but no absolute guarantee - I am so very sorry that you have been forced down this road.
As Joolsg says: there is an absolute dearth of knowledgeable gps - and even worse - there appears to be an active, indeed hostility, to further education of the medical profession.
Yet still: there seems to be the odd Dr here and there who DO help - depending on where you are, Sue seems to be the List Master !
This 'red listing' in certain areas must be some sort of maze designed by Satan himself !( if you require an opiate - and you may, to get through the blasted DA withdrawal). Sue has given you a schedule to help reduce it. It is slow, yes and the last bit seems difficult, but we are here to help.
I was only on 0.088 mg of a DA for 7 months, so it was, for me at least quite easy to come off it.. but even after only 7 months - I did get symptoms in my arms earlier in the day, which was augmentation. Fortunately I had just discovered this site and knew what it was.
I am afraid I cannot advise on other medications though. Perhaps others can.
Again sorry you have been subjected to this and I wish you all the very best !
Thank you.. I will read the links now.
I am on 6mg of ropinrole at night and .25mg 3 times during day. I cant get balance right as when taken in the evening i drop off to sleep for couple hours then wake up. I get restless legs and arms day and night. Am on amlodopine for BP and iron tabs but nothing working.
Please read Sue Johnson and Joolsg's advice to Daisysparkle because it sounds like you are in a very similar position. You are taking a lot of ropinirole, well over the maximum dose of 4mg and the fact that you get RLS during the day indicates that you are suffering from augmentation which is where the ropinirole actually starts to make the RLS worse.
There is a lot of detail in Sue’s responses so please read it carefully and take your time to absorb. Please also take a look at the rls-uk.org website and go through the links on understanding RLS. There is a lot of information there again but it’s important that you understand what’s going on so you can help yourself. You will probably need to come off the ropinirole completely and depending on how your RLS is at the end of that process you may need to think about other medications such as pregabalin or gabapentin, but for now the first steps are to understand the situation and start to reduce the ropinirole. Many people on this forum are in the same position and many have been through the reduction and are better for it. If you keep reading the posts, you will see similar advice and that will help to gain a better understanding. Unfortunately most GPs do not understand RLS properly and continue to prescribe dopamine agonists which cause problems for most people either sooner or later.
I am on Requip for 4 years , started with 2.5 mg and now every night i take 2mg of Requip to sleep the night away , very few times it wake me up earlier then i spouse to wake up . But still it helped a lot . You said u feel it in the day , i too feel in day time but never take Requip instead i walk around or use my vibrating handheld massager chargeable device to calm it down and it works . In my opinion taking day and night Requip is not a feasible idea because of massive side effects and day time sleepiness. Even though it can give u sleepiness in day if u only take it before bed but less likely if u take it day and night . I suggest u find other ways to coupe with day time RLS
Daytime symptoms are augmentation.Every single person taking these drugs will experience augmentation. It's simply a matter of time.
Follpw the advice given above to Daisy.
Yes as Joolsg says you are suffering from augmentation so see my reply above. It will only get worse and the longer you are on it the harder it will be to come off it and the more likely your dopamine receptors will be damaged and the now first line treatment gabapentin and pregabalin won't work nor will iron if your ferritin is low. Also augmentation can lead to painful RLS.
Amazing RLS suffering when the solution could just be simple iron deficiency. Docs waved Rop at me multiple times - they insisted my iron was fine (Ferritin 49). Ferrous Bisglycinate Chelate stopped the intense RLS in its tracks! Do consider a gut/absorption connection causing a possible iron deficiency.
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