RLS symptoms getting worse after being on Ropinirole for about 5 weeks?

[Dreamofsleep]

I’m new here and need some advice please. I’ve had RLS for years and my GP started me on Ropinirole mid January. I started on .5mg every night for a week, followed by 1mg at night. Relief was great the first night and I am now able to stay asleep once I’ve nodded off. However, after about a week I started getting dreadful RLS every evening from about 5/6pm. I end up walking around the sitting room for the whole evening almost. I am also extremely tired now late afternoon and into the evening. I read that one of the side effects of Ropinirole is the onset early evening of RLS symptoms. My question is will this get better in time or should I discuss this with my GP now? Any advice will be very welcome. Many thanks.

[omyjimmylegs]

HI! I am new(er) here as well....but guess what? I am reacting the same way to ropinirole. My doc started me on 2 mg a couple of days before Christmas. My feet and legs are so swollen and they bother me at all times of the day now, not just at bedtime. I have never had a problem in the afternoon or early evening before. Actually, I had shoulder surgery in Nov., and since then, game on. I could deal with an occasional night before then but now it's CRAZY. Anyway, I decided this drug isn't for me. I'm on 1 mg now, which does nothing, and made an appt with a neurologist. My doc wouldn't just order a test to check my serum ferritin, I have to go see her tomorrow. WTH? I wanted to have the test THEN go see her and the neuro. Good Luck to both of us / all of us

BTW, my 87 yr old dad got me started on weed. I couldn't use it for 3 months after the surgery but I'm back in the saddle now. It helps me. (and no I don't get high)

[Dreamofsleep in reply to omyjimmylegs]

Thanks for your response. I phoned and spoke with my doctor this morning. Reducing my dosage to .5mg and then stopping it eventually. Went for a blood test this morning. Results tomorrow hopefully. Trying to keep still writing this. Had the “jumps” as I call them since about 5.30 this evening! All the best to you too!

[moonhunt18]

It will get worse and more torturous to quit ropinerol. Get off it ASAP.

Do a search here for “augmentation.” Essentially what happens with dopamine agonists (of which ropinerol is one of many)our bodies don’t merely get used to it and require more to attain the same effecct like so many drugs, but our bodies start experiencing earlier, worse, longer and more wide spread RLS. Once you start augmenting, you should nip usage in the bud.

People here have suffered long and serious withdrawal from it. Painful and absolutely miserable because while your system is clearing out the ropinerol, it’s experiencing worse and worse degrees of RLS. Once it’s out, if you’re lucky, you’ll just go back to your original degree of RLS.

Others here know more. But I thought I’d start the ball rolling.

[Dreamofsleep in reply to moonhunt18]

Thanks for this. Saw doctor this morning. Reducing to .5mg and also had blood test. Sincerely hope I can get back to “normal” (whatever that is!). Jumping all over the place at the moment trying to write this! Had dreadful RLS in both legs since about 5.30pm.

[Hidden in reply to moonhunt18]

What happens is when weaning off a dopamine med, your dopamine receptors have got use to all the extra dopamine, so you start to take that dopamine away and your dopamine receptors protest big time, your receptors have to get used to now having all the extra dopamine taken away and that takes time for them to settle down.

[Parminter]

The starting dose of Ropinirole for RLS should be 0.25mg. It can be increased if the RLS is moderate to severe - was it?

Augmentation is possible/probable with all dopamine agonists. It is unusual that it should kick in so quickly, but on such a high dose to begin with it is entirely possible. Augmentation occurs at 7% to 8% per annum in those who take DAs.

You must go back to your doctor and tell him you have augmented. When augmentation occurs you MUST stop the drug. There are other horrors down the road.

Ask your doctor if you may try gabapentin or Horizant, for example.

hopkinsmedicine.org/neurolo...

sleepreviewmag.com/2015/02/...

Print these articles and take them to your doctor. He needs to stop prescribing DAs with such abandon.

[Dreamofsleep in reply to Parminter]

Thank you. Saw doctor this morning. Reducing to .5mg and eventually stopping Ropinirole. Also had blood test which didn’t have before with previous doctor. Results tomorrow hopefully.

[JakeRLS in reply to Dreamofsleep]

You're on the right track. My GP (wrong doc I now know) prescribed up 2mg of Rop to start with, and like you the honeymoon was wonderful, but it turns out the bride was Godzilla in disguise. Took several months and a sleep Doc to leave her, and only an opiate allowed me to make a clean break. Best of luck to you.

[Dreamofsleep in reply to JakeRLS]

Thank you!

[RosieRow]

I can only echo what Parminter has said. I augmented twice before realising what it was - and that was to increase from 1 to 1.25 and then 1.5. By then I found this forum and discovered what augmentation is and was determined that I would withdraw from it. I started on 5th November and took it really slowly but took my last dose of Ropinirole on 19th December. However, I could only do it with the help of an opiate, in my case, Oxycodone (I tried Tramadol but didn't get on with it) and codeine.

It takes a while (at least two weeks but possibly longer) after stopping the Ropinirole before it is out of your system and before anything else can then begin to take its place.

At this stage we would simply urge you to begin the withdrawal, whatever the cost (and it isn't easy). Once you've got off it you will have had time to consider what is the next medication you might choose and the basic ones are Gabapentin or Pregabalin (also known as Lyrica). When you want more advice about those you can look it up or ask again!

Don't hesitate to post again to ask any questions. There are a lot of people much more knowlegable than I am about all of this, but I thought you might like to hear from someone who has recently gone through the withdrawal process.

All the best

RosieRow

[Dreamofsleep in reply to RosieRow]

Thank you. Saw doctor this morning and reducing dosage to .5mg and stopping. Also had blood test. Results hopefully tomorrow

[Parminter in reply to RosieRow]

RosieRow, can you give me details of your oxycodone dosage - times and amounts? And more about your experience of the drug? I would be grateful.

I am considering switching to a more short-acting opioid. Methadone is very long-acting, which has both advantages and disadvantages.

[RosieRow in reply to Parminter]

Good morning Parminter

Sorry, this is going to be a very long reply - but there is no easy answer to your question since I don;t know what effect each different drug is having on me. So, here goes:

There are two sorts of Oxycodone (in the UK) Longtec (long-term release) and Shortec (immediate release). The Longtec is 12 hour acting and the Shortec 4-6 hours.

I started with the Longtec 5mg at about 22.00. It seemed to take hours to have any effect but only last 5.5 hours when it did kick in. The Shortec 5mg at 22.00 has a more immediate effect but consistenly seems to last for 4 hours.

So, after trial and error, I only use 5mg Shortec. At the height of withdrawal I would take one at about 21.30 and another one when I woke up in the middle of the night. I was also taking 60mg of codeine at 21.30. But that combination saw me through the night with no RLS and, often, just waking up the once which was good.

Some of current situation is also to do with whether Pregabalin is the right medication for me, which I started on 1st January. After three weeks I was up to 150mg Pregabalin but still not able to reduce the codeine, let alone the Shortec. After a while I started having extreme tiredness, restlessness and tension in my upper arms and body from lunchtime until mid-evening, to such an extent that it incapacitated me and I could do nothing except wander round or sit or lie constantly moving but half asleep.

I wrote to Dr Buchfuhrer and the response was this:

Most likely, it is the pregabalin that is causing your daytime sleepiness. Increasing the dose may help your RLS but may increase your sleepiness. I cannot say that the opioids are not causing or adding to the daytime sleepiness, but that is less likely.

My suggestion would be to try to get off the pregabalin and just use oxycodone. I would also stop the codeine as it is a very weak opioid that only provides minor relief from RLS. It may be better to take a few doses of oxycodone as the only drug to treat your RLS. You might have trouble getting your doctor to prescribe enough oxycodone to treat your RLS by itself but I suspect that would be the best course of therapy.

Ferritin levels can be misleading as they can be elevated by any inflammation (such as a flu/cold) even as long as a month or more ago. I would repeat the ferritin level (fasting) and also iron and iron saturation levels to be sure about your iron status.

You could use levodopa up to 2 times per week to help control any breakthrough RLS symptoms without concerns for augmentation.

The levodopa point was in response to my neurologist suggesting I could take this but my query that, having augmented on Ropinirole, wouldn't I augment on that too?

I reduced the Pregabalin to 125mg and the next day the extreme tiredness, etc, reduced massively. I still get it to a degree - finding it difficult to keep my eyes open sometimes when driving, for instance - but I've had it to a slightly lesser degree all my life (I remember sitting in Sunday evening sermons at church with my legs jerking and me not able to keep my eyes open! I used to think it was 'just' tiredness but am more and more convinced it is part of the RLS for me as it also comes on at the same time as the leg movements.

Back to the present and, after consultation with the GP, we thought it might be good to try cutting out the Pregabalin (I put on 10lbs in about four weeks, mainly fluid retention). I am down to 75mg with the 5mg Shortec and 60mg codeine in two doses overnight. The RLS is now having more effect since reducing to the 75mg of Pregabalin. But I'm trying to stick at this dosage for now as I have also been to a medical herbalist and started on those remedies a few days ago and want to keep other medication static as I try to see what effect the new stuff is having. But at the moment I've gone back to having difficulty getting to sleep and difficulty staying asleep once I do drop off.

As it stands I'm guessing that I will either need to cut out the Pregabalin and take two doses 5mg Shortec over night, perhaps plus some codeine, or revert to 100mg Prgabalin 5mg Shortec and two does of 30mg codeine (I do think the coeine does have a helpful effect for me, helping me to sleep but not itself creating the tiredness).

But who knows what will work well and for how long? I still haven't worked out if the Shortec is creating some of the tiredness and probably won't unless I do, at some point, increase it to 2 x 5mg, cut the Pregabalin out, and see what happens then.

Bottom line - I think 5mg Oxycodone is good for 4-5 hours. Not sure if 2 x 5mg Shortec will increase tiredness

I hope this helps!

RosieRow

[Parminter in reply to RosieRow]

Thank you RosieRow for all your generous time and care, that is very helpful information.

I see that, with your current medications, you have to pay attention to pills and timing almost full time. Long-acting does not seem very long with Oxycodone, does it?

I will tell you what I am now doing, in case might be helpful to you.

After augmenting on pramipexole, and refusing point-blank to take a higher dose, (as I had every side-effect in the book), my doctor gave me methadone syrup as a backup for breakthroughs, which had become more and more frequent.

One day I just decided to try methadone alone, prophylactically, and it worked. I slept for the first time in many years, and I could lie down with a book in the afternoon. (The methadone interfered with sleep while I was taking pramipexole,, but post-prami I slept immediately).

On day one I took 15mg, then 10mg for about two weeks, then 8mg, then 6mg.

I am now steady on 5mg.

Methadone is very long acting, so it covers you for 24 hours on one evening dose, so you hardly have to think about it at all. Also, as it is liquid, you can titrate the does minutely with a pipette.

But I think it has been building up in my system, as it has such a long half-life - up to 60 hours. And I believe it is making me rather dozy in the afternoons. I was not dozy at the beginning.

I hope that after several weeks at the lowest possible dose my body may rid itself of any build-up.

Because it is like a miracle.

[Woody4]

I was first put on ropinirole for my RLS. It seemed to work in the beginning at .5mg. Then it was 1mg and when she bumped it up to 2mg I went nuts. I'd take the 2mg sleep maybe 2 hours then my legs would be worse than ever. Finally got referred to a neurologist who put me on .5mg of mirapex and its like never having had RLS. The ropinirole made things worse I also started having symptoms in the afternoon. Not bad but I'd never had RLS anytime other than bedtime before.

[Dreamofsleep in reply to Woody4]

Thank you for response. Hopefully getting this sorted now. Saw doctor this morning and reducing dosage to .5mg and also had blood test. Results tomorrow hopefully

[RLSgirl]

The stories are probably all similar. I got started on a low dose of ropinirole and it worked great for the first 6-8wks. Then the benefits started fading and my doctor repeatedly increased the dose. I was already having early onset RLS in the evenings and afternoons. So I can’t speak to that. At first the ropinirole took alleviated those symptoms, but by the end of the first year on the drug all those early evening and early morning symptoms were back. And worse than they were before! I most likely had started augmenting on the drug. But I didn’t know what that meant back then. I would play with cutting back the dose and suffering through a few nights. That seemed to rest my tolerance for a month or two. But in the end I would take the pill and without fail my legs would go crazy about 40 min later, and then calm down after about 2 hours so I could get a few hours rest. I ended up taking a total of 2mg. which made me nauseous. And the effect of the drug seemed to only last half the night. So eventually I would take one an hour or so before bed and then one about 4 hours later. That prevented the nausea and helped me get 2 periods of a few hours of sleep. But it was hell when the drug was kicking in and wearing off!

I finally learned about augmentation and realized that what was happening to me and decided it was time to wean myself off. That experience is never fun. It took about 1.5 months for me to wean down to .5 mg. all the time going with out decent sleep. I should have cut the dose in half again. But I was done so I went cold turkey. And had a week of terrible withdrawal symptoms. I would not have survived it without the leftover hydrocodone I had from a previous surgery. But the side effects for the opioid was not great either, so eventually I followed the advice of several people and tried weed. It works. It calmed my legs completely. No urges of funny feelings. But I do have to get pretty high.

The ropinirole has left me with symptoms that were worse then when I started the drug. Overall I wish I had never tried it! it. was not worth the it. I am using weed to treat my symptoms so I can sleep at night. It only lasts for a few hours. So it’s still not an uninterrupted sleep. But it is a peaceful deep sleep!

[Dreamofsleep in reply to RLSgirl]

Thank you for this. You certainly have been through a horrendous time on withdrawal. Hopefully mine won’t be so bad!! Saw doctor this morning. Reduced dosage to .5mg and had blood test. Results tomorrow hopefully

[DJTP1962]

Free the weed! Glad you found something that works.

[RosieRow]

Glad you've had a positive experience with your doctor today. Those of us who have an understanding doctor, or one who is willing to listen and learn alongside you, are exceedingly fortunate.

Keep us posted with how you get on.

RosieRow

[Dreamofsleep]

Going nuts! This morning RLS so bad at 5am! Never got it like this before. In tears! Now again this evening at about 8.30pm, albeit a bit later than it has been happening. Just praying for a better night's sleep tonight.

[Kittykat1234]

Gabapentin works great! I was on .5 mg of pampaprazole and it didn’t do a thing. I got maybe 2-3 hours a sleep each night, and that was even with me taking gravol and other otc sleep aids.. it really does take some playing around with different things to find what’s right for you but I found mine and you will too!

[Dreamofsleep]

Hi All. Since my last post and having come off Ropinirole completely, I have had all the blood tests advisable including my ferritin level which was good at 129 ug/l. My GP has since prescribed gabapentin which initially worked well. I am now on 300mg 3 times a day. I find I am able to go to sleep for a few hours only and then the RLS really kicks in. I obviously need to speak to my GP again but is there any advice on maybe my night time dosage etc? Any advice would be welcome. Thank you.