Ropinirole

[ilikekefir]

I started taking Ropinirole at the end of September -0.25mg at first, then 0.5 mg. I have been taking 0.75 mg for about 6 weeks. I have since read about the dangers of augmentation and the difficulty of reducing the Ropinirole. I was going to start reducing the dose after Christmas! Can anyone give me their experience of this? What do people take after coming off this?

[SueJohnson]

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. 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.

Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin are. ( 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 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 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)."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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.

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 at

Https://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, low potassium. 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.

[ilikekefir in reply to SueJohnson]

Hi Sue. Thank you for replying so quickly and with so much information! I will need time to absorb it all but will get back to you. I take quite a few OTC supplements as well as prescribed Amitriptyline and Esomeprozole which I have read can exacerbate the problem. Coming off these last 2 would be difficult as well!

[ilikekefir in reply to ilikekefir]

I have copied and pasted the results from doctors.

Your result

Serum transferrin:

2.7 g/L

Normal range:

2.0 to 3.6

Your result 2.7 g/L represented visually on a range indicator bar within the normal range

Your result

2.7

2.03.6

View test result history

Serum iron level:

24.2 umol/L

Normal range:

11.0 to 32.0

Your result 24.2 umol/L represented visually on a range indicator bar within the normal range

Your result

24.2

11.032.0

View test result history

Transferrin saturation index:

36 %

Normal range:

20 to 50

Your result 36 % represented visually on a range indicator bar within the normal range

Your result

36

2050

View test result history

Serum ferritin:

46.2 ug/L

Normal range:

11.0 to 307.0

Your result 46.2 ug/L represented visually on a range indicator bar within the normal range

Your result

46.2

11.0307.0

[SueJohnson in reply to ilikekefir]

Your ferritin is low. 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 two tablets of 325 mg of ferrous sulfate or 75 mg to 100 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. Also take Lactobacillus plantarum 299v as it also helps its absorption.

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 turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours.

You can ask for an iron infusion instead of taking iron to quickly bring it up as this will help your withdrawal although many doctors won't prescribe it.

It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. You can also get one privately by paying for it, but it costs around £800.

Otherwise your results are fine although your serum iron could be higher but taking the iron or getting an iron infusion will help that too.

[SueJohnson in reply to ilikekefir]

Esomeprazole is a proton pump Inhibitor. RLS-UK says most proton pump Inhibitors worsen RLS. A safe substitute for esomeprazole is gaviscon advance. I believe you can switch directly but ask your doctor. You can get it on Amazon where it has been imported from the US. Take it 30 minutes after eating and . 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin.or antihistamines. However if it was prescribed to prevent upper GI inflammation and bleeding caused by long term use of NSAIDs that is a different story and you shouldn't stop it.

What are you taking the Amitriptyline for? If for depression, a safe substitute is trazodone which also helps anxiety and insomnia. You would taper the Amitriptyline down while tapering up the trazodone under the direction of your doctor.

If not for depression let me know.

[Joolsg]

I'm so sorry you are a victim of lack of training and teaching. UK doctors aren't taught anything about RLS.If they had been taught- they would know that Amitriptyline causes/worsens RLS. The PPI med you are taking stops iron absorption and thus worsens RLS.

Your serum iron needs to be above 60, serum ferritin above 200 preferably.

Raising serum ferritin above 200 and exchanging trigger meds for RLS safe options can resolve the MAJORITY of RLS cases.

Read RLS-UK website and show to your GP.

So start taking ferrous bisglycinate NOW. Take every other day on an empty stomach.

Ask for a replacement med for Amitriptyline. Why are you taking it? For depression or nerve pain? If for depression, trazodone is a safe alternative. If for nerve pain- pregabalin will be better and will treat RLS.

So reduce Ropinirole now. It can permanently damage the dopamine receptors. Once down to 0.25mg you can start pregabalin.

Ask your GP to prescribe pregabalin and start at 50mg, increasing by 25mg every few days to 150mg. Stay on 150mg for 3 weeks to see if it works before increasing further.

Read all you can. The UK is 10 years behind best practice in the USA.

[ilikekefir in reply to Joolsg]

Thank you Joolsg for all the information. I will ask the GP about iron level but will get ferrous biglycinate now and see about substitutes for Amitriptyline and Esomeprazole. I will start reducing the Ropirinole after Christmas . I sleep quite badly anyway and don't think I could cope before then. I have been taking increasing doses since the end of September and am now on 0.75 mg. I only found out about the problems with Ropirinole when a friend showed me a newspaper article. I was gutted because I was sleeping a little better and the restless legs had reduced in severity. I was going to ask for another small increase but won't now!

Thank you again x

[Joolsg in reply to ilikekefir]

Ropinirole is miraculous. At FIRST. And then it creeps up on you, insidiously. The RLS gets worse. It becomes really, really severe. The doctors tell you it's the natural course of the disease. But you are still getting sleep so you are in denial. By the time you accept Ropinirole is the problem- it's too late. Withdrawal is hell on earth. Rosie Kelly died aged 82 from a fall, trying to walk off severe augmentation symptoms on Ropinirole. Her neurologist told her family there was nothing else he could do and referred her to a sleep clinic. She died before she saw a sleep doctor. Her neurologist SHOULD have researched to find out how to safely reduce her Ropinirole with the help of an opioid. Doctors don't have a clue and are less than useless. My old GP told me to drink milk!Withdrawal left me with PTSD for over a year. It took another 4 years to find the right meds. And a huge fight/campaign with Doctors to get decent treatment.

If you get off Ropinirole now, you can avoid the permanent damage many of us experience.

Read all you can. The Mayo Clinic Algorithm and the AASM guidance, the RLS UK website and Dr Andy Berkowski's website.

There are better treatments.

[4inthemorning]

I came off ropinirol after many years and worked with John Hopkins and their protocol to do it in two weeks. Their experience with hundreds of RLS patients informed that there was no reason to extend tapering off it over months and months. Essentially, it’s shortened the tapering off misert to a very short period.

It was not easy but it allowed me to then go two weeks without any drugs, which was really hard, and then start on low-dose oxycodone, which in my RLS journey is by far the most effective least, toxic treatment.

Weening off ropinirol or any other RLS drugs for two weeks really showed me how much less severe my RLS was and just how much augmentation had taken place.

[ilikekefir in reply to 4inthemorning]

Thank you for replying to my post. Where do I find out about John Hopkins and his protocol? I only became aware of the problems with Ropinirole when a friend gave me a newspaper article about it. I have been taking increasing doses since the end of September and am now on 0.75 mg. I was was going to ask about a small increase but won't now! I will start reducing the dose after Christmas. I was very pleased to hear that it might not take months!

Thank you for all the information. x

[SueJohnson in reply to ilikekefir]

Johns Hopkins is in the US. But he is the only one that does it that way. It can be brutal.

[4inthemorning in reply to ilikekefir]

I’m not sure if John Hopkins has white papers on this. You might search on it. It’s essentially, do you want to be miserable for months and months or do you just want to do it few weeks and be done with it. Having done it, it was hard, but not paralyzing. Getting some sleep was the most difficult part in the first week and then it started getting easier.

[ilikekefir in reply to 4inthemorning]

Thank you. I will research it online - it does sound a better option.

[4inthemorning in reply to ilikekefir]

BtW, Johns Hopkins is a premier university and medical system in the US and one of the global leaders in various fields of medical research. Their RLS does both research and treatment which is part of their overall research program.

[Joolsg in reply to ilikekefir]

The RLSUK website explains the withdrawal schedule.It makes it clear you can do the slow version or, if fit and strong and healthy, you can choose the more brutal 2 to 3 week withdrawal favoured by the team at Johns Hopkins University in the USA.

I withdrew over about 6 weeks. Very fast. It was utterly brutal. As you have only been on Ropinirole for a few months, I suspect it will not be so brutal for you.

Play it by ear. Drop 0.25mg every 2 weeks. If you really struggle, slow down.

[Doghorse]

Get off ropinerole as soon as you can as it will increase RLS after a period of time, and listen to Sue Johnson who knows the truth.

[ilikekefir in reply to Doghorse]

Thank you for replying. I have taken Sue Johnson's post on board and will see my GP soon.

[LondonGir]

I am reducing my Ropinirole due to Augmentation. Not easy coming down dosage and I am now on 2.5mg with onset of symptoms early in the day. I am under a Neurologist at UCL and he says for most patients with RLS, Ropinirole works just fine and is an effective medication, However, it seems to be when you go over the 2mg a day that Augmentation can start. (I was taking 3.5mg at maximum and GP just said 'well go up to 4mg', hence contact with Dr Matthew Walker)

[ilikekefir in reply to LondonGir]

Hi, Thank you for your reply.

I have started to reduce the dosage of Ropinirole [ 0.75mg ] by cutting off a small section of the 0.25mg tablet. As I have only been taking Ropinirole for about 2 I/2 months perhaps I don't need to panic then! I will wait until after Christmas to reduce any more gradually. I only found out about the problems with this drug when a friend gave me a newspaper with an article about RLS. I was about to up the dosage to get better control.