Restless legs getting worse

[Juliesk1306]

My restless legs have go worse recently. I am find it hard to sit and watch TV with my partner. I take Ropinirole 2mg at night to help me sleep but wonder what I could take in the day please .

[Hidden]

Hi Julie, it very much sounds as if the ropinirole has stopped working.

It also sounds as if you are suffering augmentation as a result of taking a dopamine agonist, (DA), i.e. ropinirole.

I'm sorry if you already knew this but when you were first prescribed ropinirole, you should have been informed of the complications of taking a DA. They are loss of efficacy, augmentation and Impulse Control Disorder (ICD).

Luckily ICD isn't that common, but augmentation is very common.

In case you didn't know, augmentation is where the DA, instead of relieving your RLS actually starts to make it worse.

Augmentation means that your symptoms get worse, they spread from the legs to other parts of the body, start to occur during the day and start quicker when you stay still.

You will need your doctor's cooperation in dealing with this. It's quite common, unluckily, that doctors don't know how to deal with augmentation and may never have even heard of augmentation.

If your doctor suggests increasing the dose of ropinirole, this woukd make your RLS even worse. They might even suggest switching to another DA i.e. pramipexole or rotigotine. Since all DAs cause augmentation this is no help either.

In which case you need to read as much as you can about it, before consulting your doctor.

I'm afraid that dealing with augmentation can be very difficult.

It will seem counterintuitive to you, but the only effective way of improving your RLS, relieving the augmentation, is to stop taking the ropinirole.

You cannot do this suddenly. Not only is this dangerous, but because you will have developed a dependency of ropinirole.you can have potentially, very severe withdrawal effects.

Stopping taking a DA, then, has to be done by reducing it very very slowly.

You may also now be thinking about.how your RLS was when you first started taking ropinirole and, of course, if you stop taking it, it could be like that again . In which case, you.might consider taking an alternative RLS medication.

The alternative first line medications for RLS are either gabapentin or pregabalin. In fact it's now thought that one of these should be the first thing to prescribe for RLS because they don't cause augmentation.

They aren't perfect themselves I 'm sfraid. I have to say they have side effects and complications too. I suggest you read about these, but don't be put off. They don't affect everyone and a lot of people find the side effects less bothersome than having RLS symptoms and insomnia.

I 'd say the best plan is to get your doctor to prescribe gabapentin or pregabilin a few weeks BEFORE reducing the ropinirole. They take a few weeks to work and you have to build up the dose.

Starting dose gabapentin 300mg, minimum effective dose about 900mg

Starting dose pregabalin 75 mg, minimum effective dose about 150 mg.

After 3 - 4 weeks, you could start reducing the ropinirole. This could be done in steps of 0.5mg, but if withdrawal effects are severe, then steps of 0.25mg. You have to cut the tablets. You can reduce the dose about every two weeks or longer.

Withdrawal effects usually consist of temporary worsening of symptoms and sleeplessness. They can be at their worst 24 - 48 hours after the final dose and can wear off 2 weeks after that.

Some people manage to get their doctor to prescribe something to help sleep while withdrawing. Some find an opiate helps with withdrawal, but not many doctors are willing to prescribe one

I appreciate that you might have wanted a quick and easy solution to your worsening RLS. i'm sorry, there isn't one. It's fairly clear you're suffering augmentation. Taking something else in the day is not the answer. Stopping the ropinirole is.

Hete's some links to information about augmentation

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

sleepreviewmag.com/uncatego...

Heres a link to some information about treatments for RLS including gabapentin/pregabalin

uptodate.com/contents/treat...

I hope this is of some help.

[Joolsg]

Hi Julie

Manerva has given you excellent advice, so please take it. Your RLS will continue to worsen and will move to your arms and other body parts. Don’t touch another DA. Get off the Ropinirole very slowly.

I watched a webcast yesterday by one of the world’s top RLS experts and he described dopamine agonists ( Ropinirole, pramipexole, rotigitone) as a TICKING TIME BOMB.

He said he sees patients with augmentation every day in his clinic and his task is to get them safely through withdrawal.

He advises withdrawing over a long time period- minimum 3 months, up to one year.

It’s a scary thought but most people on this site have been in your position and have gone through withdrawal. A lucky few have managed it without trauma but the vast majority will have a hard time.

Once off DAs daytime RLS will disappear- you’ll be able to sit in a car, in the cinema etc.

Read all the links Manerva has posted and make the choice to take back control of your worsening RLS. Life is better off DAs.

[yohlense in reply to Joolsg]

Can you share the webcast site or doctors name, would be interested in seeing what he has to say.

[Joolsg in reply to yohlense]

The webcast was broadcast by the USA RLS foundation & you could only see it by logging into the members’ section of their website. The membership fee is around $45 for people outside the USA- I think it’s worth it because you get invaluable info and regular webcasts by the top US RLS experts and the money funds research- the only research being carried out in the world on drug treatments and causes of RLS.

The webcast on Friday was by Dr John Winkleman of Massachusetts General Hospital in Boston.

He included useful links to help persuade doctors on the safety and efficacy of long term low dose opioids for RLS.

[yohlense in reply to Joolsg]

Thank you for the information

[Juliesk1306 in reply to Joolsg]

Thank you for your excellent advise x

[Hidden in reply to Joolsg]

Find it a strange comment that it will diapering if stopping meds I’ve had my r s l in my arms wrists since 12 never had any meds till 28 Until some one comes up with causing it the won’t stop it

[yohlense]

I have been on Ropinirole for a long time and I have gone through the augmentation. I have found a manageable way to take it in low doses and keep the RLS at bay. I take one tablet (1mg) in the afternoon about 4 pm and then a half tablet at night before bed. Along with this afternoon tablet I take a supplement called Seratame. This seems to keep me fairly level. There are things that trigger the RLS and I try to avoid them if possible. I've also had some therapies that helped, if you can find someone that does Cranial Sacro massage and mild excercise. Hope this is helpful.

[Juliesk1306 in reply to yohlense]

Yes thank you what kind of things trigger yours pleasec

[yohlense in reply to Juliesk1306]

Usually over activity, (i.e. Being on my feet for a long time),being excessively tired. I do work out 3x a week and once in awhile if I over do it I can have a flare up. But the exercise does help.

[Juliesk1306 in reply to yohlense]

Thank you

[Docholiday1]

Hi Juliesk you can take Ropinirole at any time. I found 2 mg made me feel ill. Went down to 1 mg still dont feel good on it. I was given clonazepam as my sleep pattern was shot with the Ropinirole. Togethe they are helping a lot. My legs are fine all night the problem is when to take the Ropinorol. Sometimes my legs start at 2pm. I take the Ropinerole but dosent stop for hours sometimes. If I can manage to take it before the legs start I have a full 24hrs pain free. Other times I have forgoten to tak e the Ropinerole until 6pm and legs ok. Very strange dreadful illness. I swear I would consider amputation. I do feel alot better have gone three days once without a twinge it was heaven. Play around until you get it right for you. Good luck hope it helps.😘😘😘

[Heatherlss in reply to Docholiday1]

Hi Docholiday,

Its good to hear that you have relief for the most part. Just wanted to let you know that if you're getting RLS at 2pm that is most likely to be augmentation. Most likely. Not definitely. It could well be natural progression. But at 2mg Ropinerole, augmentation is more likely.

If you're doing well, then might as well leave it however, please be very wary of increasing the dosage.

A lot of people in this forum wish they knew that earlier.

Good luck !

[Docholiday1 in reply to Heatherlss]

Thanks Heather an interesting post came on about aluminium in tooth fillings/some toothpastes. I have white fillings but the dentist said I dont know how you dont get pain in that back tooth. Also inflamation being the cause. Have you read these posts? What do you think?

[Hidden in reply to Docholiday1]

Do you know your the first person who knows how bad it is the misery means travel on public transport is difficult to say the least I’ve felt the same as you so many times even walking under a bus hope you get some relief take care Brian

[Juliesk1306]

Have people got any tips on what can trigger RSL eg foods etc

[Joolsg in reply to Juliesk1306]

Different for everyone. Some people find caffeine, chocolate, sugar, carbs and alcohol trigger RLS but others report coffee actually helps RLS.

The only thing I can suggest is to keep a diary and note anything that makes your RLS worse.

Medication triggers include anti histamines and most anti depressants.

[Hidden in reply to Joolsg]

I do take extra iron tablets research done in the USA four people who had r s l had normal iron in there blood had low iron in parts of there brain people crave chocolate for the iron as in craving tomatoes after stopping smoking take a look Howard Jonson

[Joolsg in reply to Hidden]

Yep- it’s known that low brain iron causes RLS for many people. IV iron infusions of Injectafer dramatically improve RLS in 60% of patients, moderately improve it for 20% but 20% have no improvement.

I’m one of them.

It depends on the cause of your RLS. I suspect if it’s related to spinal or CNS damage/scarring then iron won’t make any difference.

That’s why it’s important to share what helps- it may help someone else. But we all react differently to different triggers etc.

[Docholiday1 in reply to Juliesk1306]

I Found allergy tablets made my R L much worse Hydrocloride.

[Docholiday1 in reply to Juliesk1306]

1 I know for sure is Hayfever tablets.

[Juliesk1306]

Thank you I will do that. I am on anti depressants and I know that this probably makes them worse.

[Docholiday1]

I am on Escitalopram

[yohlense]

I also have a hard time in the evenings, so I take a requip at 4pm and then a 1/2 at bedtime and this helps get through the evenings and night. I also used a supplement that has helped a lot as well.