has anyone used ropinirole and had it stop working? I have to take several 1mg a day and a 4mg morning and night

[nishimi]

I have had to keep upping the dose over the last two years, now I can't sleep for more than an hour.

[ChrisColumbus]

Welcome to the forum.

You are suffering from dopamine agonist–induced worsening of RLS symptoms known as augmentation, which happens eventually to most users, which is why DAs - ropinirole, pramipexole and rotigotine - are no longer first line treatments for RLS.

You haven't completed your profile to show which country you are in, your age etc, which can be important in giving you advice, but you do mention gabapentin: gabapentin and pregabalin are preferred treatments now.

You are taking much too much ropinirole: 4mg a day in total is the maximum recommended for RLS. But dopamine agonists should never be discontinued abruptly as serious withdrawal effects can occur. You need to taper down VERY slowly, which will take a long time.

You need expert advice from others who've been through this: look for help from members such as Joolsg and SueJohnson and others later to help you through this. It will be a very slow process but it will be worth it in the end.

Best wishes

[nishimi in reply to ChrisColumbus]

thank you ---USA and 68 years

[ChrisColumbus in reply to nishimi]

Right, thanks. So please now wait for expert detailed advice from others here on how to come off ropinirole: do not make a change until then.

There may also be questions about any other medications you are taking, because many things - like most antidepressants, sedating antihistamines etc. - make RLS worse.

Have you had a recent full iron panel blood test, and if so what were the actual numbers for serum ferritin and transferrin saturation (TSAT)?

Meanwhile, you might read this from RLS-UK (this is a UK site, but we have many international members) on augmentation:

rls-uk.org/augmentation-reb...

And as you're in the US you might consider joining the RLS Foundation:

rls.org/understanding-rls/faq

[SueJohnson]

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

Oh my goodness you are taking at least 8 mg + several 1 mg a day. As Chris said 4 mg is the maximum daily dose for RLS. Your doctor is very negligent in prescribing that much and could be sued for it.

You are suffering augmentation. 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.

This means you need to come 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 post back here as the advice will be different.

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.

Ropinirole 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 it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are 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)."

You should save the link to this answer because it is going to be more than a year before you are off ropinirole.

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...

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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.

Meanwhile 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, oestrogen (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 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.

You may want to change doctors since yours does not know much about RLS. If you can list the city and state where you live I may be able to give you a name of a knowledgeable doctor.

[nishimi in reply to SueJohnson]

i live in Nevada i go to a Doctor in reno however i live 4 hours from reno, 3 1/2 from Las Vegas. i have had my ferritin checked 3 years ago, it was very low, nothing was done about it.

[SueJohnson in reply to nishimi]

What city do you live in?

[nishimi in reply to SueJohnson]

Tonopah very small town. ropinirole 4mg and 2mg have Xl the 1mg doesn't. the ferritin test was 3 years ago, i did take the ferrous pills. i will ask for a blood test to see where the level is now. i can afford the infusion if i need one .

[SueJohnson in reply to nishimi]

On no! That makes your situation much worse. The XL version is formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. They are intended to last all day.

For example a 25 mg XL tablet is equivalent to taking 25 mg twice a day, so if you reduce by 25 mg of the slow release tablet you are in effect reducing by 50 mg. And if you cut them you will be taking 50 mg all at once.

You can't cut them so they are harder to come off of. You need to switch to regular ropinirole. And to do so you will need twice the dose to be equivalent and you will need to take twice the dose you have been taking.

Then you can start the reduction I mentioned above.

You definitely have a lawsuit again your doctor! I would contact a lawyer. The maximum dose for Parkinson's is 16 mg a day and you are taking the equivalent of more than 16 mg and it is going to take you more than 2 years to come off it.

[SueJohnson in reply to nishimi]

Dr. Jonathan Spivack is a neurologist in Reno that treats RLS more frequently than others at Renown Regional Medical Center 75 Pringle Way Ste 401 Reno, NV 89502 [phone]

However he may still prescribe dopamine agonists and may not prescribe low dose opioids which you will need. I would call his office and ask if he follows the Mayo Updated Algorithm on RLS and if he prescribes low dose opioids if he feels it is needed.

If he doesn't or you are not happy with him I can search for someone else.

If you do see him, please let me know if you are happy with him so I will know if someone else needs a recommendation.

[nishimi in reply to SueJohnson]

he is my Doctor

[SueJohnson in reply to nishimi]

Oh no! Of all the names I could have found I found the worst. I will put his name down as someone to definitely NOT to recommend!

I'll look for someone else.

[SueJohnson in reply to nishimi]

It's taken me awhile. I decided to look in Las Vegas since a doctor in Reno might know or be friends with Dr. Spivack who you should at least report to the Nevada Board of Medical Examiners. I'll give you more information on that and what you should write in your complaint later as you should wait until you see a new doctor and are satisfied.

Dr. Muhammad Nayer 178 N Pecos Rd Ste 200 Henderson, NV, 89074(702) 342-0237. Has telehealth appointments. Has very high treatment of RLS. He is board-certified in neurology, clinical neurophysiology, and sleep medicine.He has an excellent educational background as he did his residency in neurology at Northwestern University. He did postgraduate training at Duke University followed by a fellowship in clinical neurophysiology and sleep medicine. He has office locations in Bullhead City, Arizona as well as Henderson, Nevada.

However I would ask his office if he is familiar with the Mayo Updated Algorithm on RLS and if he prescribes low dose opioids if he feels it is necessary.

If you do see him, please let me know if you are happy with him so I will know if someone else needs a recommendation. Also I can then give you information on reporting him which is important so he won't do what he did to you to anyone else.

[SueJohnson in reply to nishimi]

Do you know what your actual ferritin number is? If not ask your doctor's office.

Your best bet is to ask for an iron infusion to quickly raise your ferritin as that will help in your withdrawal from ropinirole. It is worth it to go private and pay for it yourself as generally Medicare won't pay for it unless you have tried to raise it with iron tablet and been unsuccessful in raising it with iron supplements. You should be able to get it for $400 if you check around.

If you can't afford it or don't want to then you will need to take iron tablets to raise it.

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. 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. Ask for a new blood test after 3 months.

[nishimi in reply to SueJohnson]

thank you all for the advice and support . your knowledge is impressive.

[Coeso in reply to SueJohnson]

I was reading this reply and can't understand something. I thought that the highest dose for rls was 2400mg gabapentin which is 400 pregabalin, so how can 600 pregabalin be taken which is much more than 2400mg gabapentin. Yesterday I saw my neurologist, who is trying very hard to please me but again she said why don't you try a ropingrole patch. What can I say. In Greece a neuro is not allowed to prescribe opiates. Only a pain specialist

[SueJohnson in reply to Coeso]

The highest dose for gabapentin is 3600 mg

[Coeso in reply to SueJohnson]

OK Thank I didn't know that. I thought it was 2400mg. So my waking up with symptoms means I could take more. I'm going to try pregabalin 400 tonight. It's working well all day but I wake up in the night and take some Kratos. Maybe increasing the dose would help. I don't know what we would do without you guys.

[Elisse3]

Hi nishimi. You have come to to the best place and will get the best advice on how to wean down slowly off that very high dose of the ropinerole. How many mgs you think you take during the day. apart from the 4mgs morning and night. ? As Chris has said we have a few very knowledgeable and experienced members who will help you.

[nishimi in reply to Elisse3]

i am taking 1mg every 2 - 3 hours and its not working i am having break thru the whole time.

[Elisse3 in reply to nishimi]

All the information that Sue has given you is the best advice. As she has said save it so you can refer back to what you need to do. You have a long journey to get off the ropinerole but you will be glad you did it. I wish you well.

[RiversW]

Nishimi,

I would just like to concur with Elisse3. You have found a best group of people to help you with the augmentation you are experiencing. I went through augmentation for around 6 years and today I have been dopamine agonist free for almost two months and have not felt better in years. I mean YEARS! This would not have been possible without the advice and support of people like SueJohnson, Jools and others.

I would suggest that you scour the post on this site and educate yourself about RLS as much as possible. I feel confident in saying that you will learn more here that you ever did from your doctors. The information you will discover is a real eye opener and essential in helping you understand and deal with your RLS, especially with regards to your doctors.

The good news is you are now headed in the right direction.

You have a long journey ahead, but you will get to a better place.

Take care. Rivers

[TheDoDahMan]

If all else fails and you need low-dose opioid therapy, Dr. Mark Buchfuhrer of Downey, CA, is a world-renowned RLS specialist and is able to prescribes it to refractory patients out-of-state.

Am I correct in assuming that you suffer from serious lack of sleep because of your RLS symptoms?

[nishimi in reply to TheDoDahMan]

yes , the most i get is around two hours before my legs wake me up. i do this until i am so exhausted that i am able to sleep for up to 5 hours before i am forced awake.

[TheDoDahMan in reply to nishimi]

Sorry that you've had to "join the club." I've been lucky enough to have been put on a 10mg/day methadone prescription and now I'm able to sleep without interruption for the last 5 years without having developed an opioid tolerance.

[HipHop1972]

Hi Rishimi, I was on Ropinirole for several years and Nupro patches before that so many years of taking a dopamine agonist. I got to the stage of having to increase my dosage as RLS got progressively worse, starting earlier and affecting not just legs but arms shoulders and torso. RLS - UK at an AGM suggested that I should withdraw from It. Reducing by 0.25mg every 2 to 3 weeks I managed to become Dopamine free after 13 months. It was not easy but you have to stick with it and I must say I’m so glad I did this. You will find lots of posts like mine on this forum and with recommendations of meditation to take to replace Ropinirole, you just need an enlightening GP who is willing to look outside the box few and far between I’m afraid as most know nothing about RLS and it has no place within their Medical Training

Good luck and best wishes HipHop1972

[nishimi in reply to HipHop1972]

thank you , every bit of information is important to me. i had no idea this was a common issue.

[Elisse3]

How are you doing. Have you made a start on any of the advice Sue has posted for you ?

[nishimi in reply to Elisse3]

got 3 hours of sleep tonight ....better than two....yes i have been able to follow thru / research some of Sues advice. i will continue to move forward to get off the ropinirole. thank you all for the information and the outpouring of support, it truly helps knowing that i'm not alone in this. (who knew)

[Elisse3 in reply to nishimi]

We are always here keep in touch and ask any questions you might have.

[Birdland]

My heart goes out to you. I have been where you are now. I took Ropinirole for 16 years and got up to 8 mg per night. My RLS symptoms kept getting worse, not better. I knew I had to come off of it. It was NOT easy!!!! It's a terrible drug!!!!! If you do taper off, go very slowly and ask questions on this forum as so many of us have gone through it. You will be much better off once this drug is gone from your life.

[nishimi in reply to Birdland]

thank you