Ropinerole: Hello everyone just a quick... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinerole

26 Replies

Hello everyone just a quick question .... is it normal to take your ropinirole and an hour later you’re RLS goes mad for about two hours and then calms down and gives you some peace. I’m on 0.75, and yes it does seem to help but I’m aware of the fact that when I take my dose in the evening my RLS goes crazy for about two hours 🤷‍♂️

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26 Replies

From what I've read its part of the it works for some better than others routine.

Not to mention it seems all the meds have potential to make it better then stop working and make it worse.

I have a problem with all the meds with in 3 days I get suicidal thoughts yippie,not really it sucks to feel that way.

I hope you find something that's great for you.

bill54321 profile image
bill54321 in reply to

Take .5mg Ropinole before meals at noon and evening. RLS comes with leg up after meal as you become somulent. Take 2 of .5 at one hour before going to sleep. If on capsule of gapadentine, take 2 capsules for nerve repair at the same time, at night. If you have hip or shoulder pain, take low pain dose of tylynol or Tramadole. (This is my routine based on study) I never vary from it or increase. Early morning RLS can be relieved by waking up and walking it off and going back to bed(instead of a pill). I give this information as a reference only. Seek council from a Movement neurologist. Medication is different in brands in the UK. Good luck

in reply to bill54321

No thank you to those drugs! Like I said been there done it did it.

Thirty three long years.

Pippins2 profile image
Pippins2

Try taking it an hour or 2 earlier and see if that helps x

I can't think of any explanation for why ropinirole should first trigger an RLS episode, then relieve it.

If you take the ropinirole at the same time every night then the symptoms must start the same time every night.

It's not unusual for RLS to start up, more or less, the same time every night.

In that case it may be just coincidental that your symptoms start up an hour after taking the ropinirole.

Tablets don't work immediately. It depends on a few factors, but it can take 2 or 3 hours for some meds to become fully effective. It's possible your symptoms start before the med has become effective.

I'm just guessing, but as a test you could try taking the ropinirole 1 or 2 hours earlier and see what happens

Gillyfran profile image
Gillyfran

Hi to you, I take two a day, one at 5.30 and one between 9.30 and 10.30pm. If I forget to take the early one and take it later for example 7.30 then I get the leg madness and in fact sometimes I don’t take the second one but instead take 2 co codamol. It doesn’t happen that often. I have been taking these tablets for 13/14 years now. Sometimes leaving it too late in the evening to take the medication starts it all off. Trial and error but in general Ropinerole works for me.

It’s a horrible disease.

Regards

Gill

I’m so glad this site is here, I shall call off the surgeons and leave the amputation for now 😊

Siberiancats profile image
Siberiancats in reply to

Nice one Dave.

I’m on 4 mcg of Roprinerole which is not perfect but hey when you are desperate you’ll take anything. Some nights I’m relatively ok but other nights I’m doing anything to take away the symptoms. It has now spread to other parts of my body particularly my arms and wrists. I have tried other treatments but none of them last and I end up going back to my doctor to see what else is on offer.

Ready to give up!!

My sympathy goes out to all my fellow sufferers.

in reply to Siberiancats

You're suffering from augmentation!

sleepreviewmag.com/uncatego...

Nlthomp profile image
Nlthomp in reply to

I’ve actually wondered if you could get “phantom” RLS with an amputation 😂

Kaarina profile image
KaarinaAdministrator in reply to Nlthomp

As one of our members, Joolsg, said three year ago in a reply to a thread, "amputation wouldn't work as people get RLS in phantom limbs. We've all considered it though!!"

4weda8 profile image
4weda8

This is my first post. I do 1mg 3times daily. I still have restless legs?

in reply to 4weda8

No relief at all ???

in reply to 4weda8

I wonder why you're taking it 3 times a day. By the time you've taken the second dose, the first will have worn off. By the time you take the third dose, the second dose will have worn off. That means there's probably never enough of it in your blood stream to have any real effect.

Especially at night when you need it most.

Ropinirole is a usually a once a day medicine, at night.

If you do this because you have symptoms during the day, then you probably have augmentation.

Taking it 3 times a day won't help.

Parminter profile image
Parminter

If you take the meds then lie down to sleep withing an hour, then yes, it is not unusual.

Take the meds two to three hours before you intend to go to bed. Or take half three hours before, and the other half two hours before.

ctgafford profile image
ctgafford

Hi. I have been on Ropinerole 1mg every evening for a little over a year. For me, it works. Well, let me elaborate. Within 25 minutes of taking it my body just deflates of all energy and I must go to bed immediately. Sometimes it’s even all I can do to walk back to the bedroom. The catch though is if I don’t take it my legs go nuts at 8pm and I kick all night. I finally got my doctor to listen to me. I mean I can’t go to bed every night at 7:25 and live a quality life. So a little over a month ago I started Pregabalin every evening at 7:30 and then the Ropinirole at 10 (or 25 minutes before I’m ready to go to bed). I’ve had to play with the Pregabalin dose but have finally had good relief on 200mg. Thank you to higher beings! I can finally sit down in the evenings and watch tv, read, pay bills, etc.

I do think the others have a good idea for you to back your dose up an hour or 2. I know once my legs get going, no amount of med help at that point.

in reply to ctgafford

Interesting, - when I first started taking a DA I had the drowsiness problem. I was so knocked out, I had to crawl up the stairs. Sometimes went to bed still dressed. It wore off after a few weeks though.

I'm not clear what's happening with your current medications. If as you say RLS symptoms start at 8pm and you take pregabalin at 7.30, it takeas about 2 hours for the pregablin to reach maximum effect. It's normally taken 2 hours before bedtime.

It seems, unlikely that the pregabalin is stopping symptoms only half an hour after you've taken it.

What I'm wondering is, if you're not getting symptoms at 8pm then why not?

ctgafford profile image
ctgafford in reply to

I know. Odd. But they also say ropinirole takes at least an hour to kick in but not for me. Like clock work, 25 minutes. To the second. Irregardless, I have relied after a year of misery. I’ll take it.

in reply to ctgafford

Intriguing!

Just to clarify,

1) if you don't take anything before 8pm then the RLS starts, is that correct?

2) If you take the ropinirole before 8pm you do NOT get RLS symptoms at 8pm but you're knocked out?

3) If you take pregabalin at 7.30, you do NOT get RLS at 8pm, is that correct?

4) Is 1) STILL correct, i.e. having taken the ropjnirole at the later time the day before, what would happen if you didn't take the pregabalin at 7.30?

The reason I ask is because withdrawal effects from a DA can start within 24 hours of the last dose. You seem to absorb it very fast, you may also eliminate it very fast. In your case it may be 24 hours or less before withdrawals start. If you take it at 7.30 one day then by 8pm the next, withdrawals (or rebound) could have occurred.

Think about it! :-)

LotteM profile image
LotteM in reply to

Sharp, Manerva!

Trikkinoy profile image
Trikkinoy

It sounds like to me you may be in early phases of Augmentation. My suggestion would be to get off of it and what ever you do don't increases the dose. I went through pure HELL on this drug and it took me 2 months to get off. I am not even sure why they keep prescribing this drug to people with RLS it should be against the law! My 2 Cents! Have your doctor try Gabapentin or an opioid. These 2 drugs changed my life and gave me real relief.

This happens to me with my meds, i take one tramadol/paracetamol then later on take a 1/4 of a 0.088mg pramipexole, and each one when i take it sets my RLS off for two hrs, i end up pacing alot. before it all calms down.

It is a possibility that you're showing early signs of augmentation.

However, this is usually indicated when symptoms start up earlier in the day, not just the evening. They are also more intense, can spread to other parts of the body and start up quicker when trying to relax.

If you take the ropinirole earlier and it works, fine. But if the symptoms also start earlier then you may be starting to augment.

I’ve only been on the medication for two months, I was only getting symptoms at night however I found when I first started taking this medication I would get symptoms about an hour after taking it and then things would calm down.

Sheridan55 profile image
Sheridan55

RLS management is very individual. Because of stay-at-home, I find myself sitting more than usual. My neurologist recommended a demanding schedule (I set reminders on my phone) based on bedtime of 2 am:

Ropinirole 0.25 mg at 6pm, 0.5 mg at 9 pm, 0.5 mg at midnight.

I get 2-3 good days followed by 2 horrid nights. This is a new regimen, so will give it a little longer.

Blueeyes5265 profile image
Blueeyes5265

Lower your dosage to 1/2

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