Insight

[Sunri]

I have just started on ropnirole 0.50 mg,how long till it starts working. It's been 13 days now. Have had some side effects and change in symptoms but no relief from it.

[Madlegs1]

I'm not going to rise to the bait!

Just read up on any of Sue Johnson's replies to many posts on this site.

Good luck.

[SueJohnson]

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

You are lucky you came to the forum while you just started on ropinirole as we are going to tell you to get off it.

But first are you sure you have RLS as .5 ropinirole should have stopped your symptoms.

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

Do you meet all of these?

Up to 70% of people will eventually suffer augmentation on a dopamine agonist which is what ropinirole is according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it 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 so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

So you need to come off it. Also don't let your doctor switch you to pramipexole or Neupro.

Since you have only been on it 13 days I would suggest cutting your dose to .25 mg and see if you have any withdrawal symptoms. If not then try stopping it entirely. If so let the additional symptoms settle before stopping it entirely.

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.)

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.)] Call your doctor and ask for a prescription so you can start it now 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)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 and you want your transferrin saturation to be between 20 and 45.

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 potasium. 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in.

[Sunri in reply to SueJohnson]

Thank you Sue, that's a comprehensive amount of information you have given me. I will contact my Gp to discuss my current treatment. I feel anxious about taking medication that may make things worse, however not that confident of challenging my doctor over medication choice either.

I live in UK and getting appointment with doctor is an achievement in itself. The symptoms of rls which you described is definitely what I experience. At the start of taking medication after 3 days, I felt symptoms didn't last so long but still there, now after 13 days they seem to turn up like clockwork same time every evening and no lessening of duration.

[SueJohnson in reply to Sunri]

Do feel confident about challenging your doctor. You can do it and it is in your best interest.

You can start reducing the ropinirole now. You don't need to wait for your doctor as you will be no worse off than before you started taking it and you will be preventing things from getting worse.

Where do you live in the UK? We may be able to give you the name of a doctor who is more up to date. You might have to go private at a cost of £250 - £350. Could you afford that?

[Sunri in reply to SueJohnson]

Thanks Sue, I will contact doctor tomorrow. I have halved my dose tonight. I couldn't afford a private doctor. I honestly feel encouraged by yourself, and the information I have received, and what I have read on this site to be able to have the discussion needed with my doctor. Thank you for that. I'll let you know how I get on.

[Joolsg]

Can I ask where you live?This is a UK website, but I think you may be in the USA.

Ropinirole is no longer first line treatment amongst experts because it will eventually feed the disease and make it far more severe.

In the UK, there are hardly any experts so doctors still prescribe Dopamine agonists.

However, first treatment should be to take full iron panel blood tests and raise serum ferritin above 200ųg, preferably, via pills every other day or iron infusions. Your doctor should also review ALL existing medications and supplements because many CAUSE RLS. Anti depressants are the main culprits.

First line Medications should now be gabapentinoids.

In your case, you have started 0.50mg Ropinirole and after 13 days it hasn't helped.

There are 2 possibilities.

1. You don't have RLS..

2..You have severe RLS and 0.5mg was too low to cover it.

So look at RLS-UK website diagnosis and see if you do have RLS. The overwhelming URGE to move is the key diagnostic criteria.

If you do have RLS and it is severe and 0.5mg was too low- do NOT increase.

Stop it now before you go down the inevitable route to augmentation.

Get blood tests. Raise serum ferritin. Replace trigger meds.

If that fails, start pregabalin or gabapentin as per the Mayo Clinic Algorithm.

[Sunri in reply to Joolsg]

Thank you for your response as in my reply to Sue I will try and get an appointment with my doctor . I am so disappointed that the relief I was desperate for has not happened and that I am possibly taking something that has long term consequences for my health.

[Joolsg in reply to Sunri]

Unfortunately it is a worldwide problem. RLS is not taught at medical school or during GP or neurological training so there is zero knowledge.Guidance, if it exists, is usually outdated.

Only the USA has the latest research and treatment options. The new AASM guidance relegates ALL dopamine agonists to end of life scenarios because of the very, very high rates of drug-induced worsening ( augmentation) and Impulse Control Disorder.

But first, you need to establish whether you do have RLS.

[Irmajs]

Ropinirole is an awful drug and please get off of it while you can and hopefully won’t go through withdrawal. My RLS started getting worse after a year on ropinirole. Unfortunately I didn’t have an RLS educated neurologist and as my RLS got worse, he kept increasing the dose. I had RLS 24/7 and couldn't sit for more than 10 min. I finally learned about augmentation and changed doctors. After getting off ropinirole my RLS returned to only being in the evening and night. Ropinirole also can cause compulsive disorders. I got lucky that I fought that feeling to over spend. But couldn’t figure out why I was wanting to buy stuff all the time. It was driving me nuts. Went to Vegas one weekend and was miserable because I knew I was spending too much money but couldn’t control it. Thank goodness I didn’t live there. As soon as I weaned off the drug I was fine. Back to my old self looking for another RLS solution. I wish you luck.

[Sunri in reply to Irmajs]

Thanks for responding, I'm just so glad I found my way to this site. I will not be continuing with Ropinirole whatever my doctor thinks. After getting more ininformation from people on this forum and reading other rls sufferers stories I am beginning to get angry that doctors are prescribing this awful medication. I hope you get your solution soon too.