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[simlou]

I've had RLS for many many years, getting progressively worse. I was put on Ropinorole, which worked well at first, but then I had to up the dosage until I was taking 2.5 mg every night. I was tired during the day and then the terrible pain and cramping in my legs began. I was sent for tests to see what was causing it, but nothing was found. So last night I stopped the Ropinorole and put on a Neupro patch. Obviously there's nothing happened just yet, but I shall never return to Ropinorole. It's terrible stuff.

[nightdancer]

Hi, welcome. Just so you know, Neupro is the same medication as Ropinerole. They are both dopamine meds. The difference is the patch obviously bypasses your stomach, and it is time released. Ropinerole can come in fast acting forms and time released also. Ropinerole CAN just stop working, you might want to look at posts about augmentation, though. It literally means "worsening of symptoms". And, of the dose gets too high on any dopamine med, augmentation can happen. That is why 2 mgs is the top dose for Ropinerole. Since you say your RLS has progressed , you have to watch it on the patch, too. You are on the 2 mg patch, but keep track of symptoms. If you had issues with one dopamine med, you can have issues with all of them.

[Hidden]

Sorry to hear the Ropinirole stopped working for you, if it has.

That can happen with Dopamine Agonists, (DAs).

I don't know if what you're experiencing is augmentation or not. You simply say pain and cramps.

If your RLS symptoms have become more intense, have spread from.your legs to other parts of the body, happen earlier in the day and start more quickly, these are signs of augmentation.

Otherwise, pain and cramps aren't part of the accepted diagnostic criteria for RLS, so although some people do get these with their RLS, it does mean that your pain and cramps may not be due to your RLS.

If this is the case. then switching to Neupro will make no difference. As nightdancer says, Neupro is just another DA.

Neupro has a slight advantage over Ropinirole, as it is less likely to cause augmentation, if you don't already have it.

You don't say what tests you had, but this still doesn't mean your pain and cramps are due to RLS.

It may be that you are suffering from a magnesium deficiency. There is no easy way of detecting it. A normal blood test for magnesium may not show any abnormality, it doesn't test how much magnesium is actually inside your cells. A lack of intracellular magnesium is associated with RLS and could cause cramps.

If the Neupro gives you no relief, you might consider a magnesium supplement.

[dklohrey]

I have had RLS for over 30 years but would never describe it as painful or cramping. To me, its a creepy, crawly sensation in the legs that makes moving them the only source of relief. It generally happens when I am laying down. You might consider a second opinion. I have been taking ropinirole for about 20 years. I have progressed to 3mg and it still helps me. I have also started using compression socks, which also seem to help in relieving the symptoms. I wear the socks during the day and remove them at night. They eliminate almost all RLS symptoms during the day and there seems to be some residual effect at night.

[Hidden in reply to dklohrey]

If the socks work during the day, I guess that means that without them, you would get symptoms. In which case, you probably have augmentation.

There doesn't seem.to be any long term statistics on augmentation due to Ropinirole. In the shorter term I believe 38% of people taking Ropinirole get augmentation after 5 years. Ropinirole is similar to Pramipexole in the shorter term, so may be in the longer term. 60% of people taking Pramipexole get augmentation in 8 to 10 years.

I used to be completely ignorant about augmentation, it crept up.on me, didn't know I had it and was perhaps overaccepting of the problems it caused me.

I do know that I was completely dependent on Pramipexole.

It all dawned on me last year that I could switch from Pramipexole to an alternative and this would relieve the augmentation. I did switch and it has worked.

It's like there being a constant loud noise in the background all the time, then it suddenly stops. The silence is deafening.

It's something you might like to consider that could possibly improve your quality of life.

[dklohrey in reply to Hidden]

What was the alternative that you switched to? And thank you for your insight. Yes, I would have symptoms during the day without the socks. I use to go out to dinner and not be able to sit through it or stand during parts of a tv show. I know I am trying to delay the inevitable. I have been lucky that ropinirole has worked for so many years.

[Hidden in reply to dklohrey]

I admit, I've never really had a problem with going out for dinner or watching TV shows since I started on Pramipexole. This may mean that my RLS, subjectively at least, isn't as severe as yours.

However, for me, I used to get the horrible sensations and urge to move before I started on Pramipexole. These symptoms completely disappeared, at first. Later as RLS symptoms reappeared and slowly got more intense, the RLS sensations and urge to move turned into involuntary movements, I call twitching.

Not to be confused with "tremors" or "fasciculations" which can also be called twitching.

In some ways twitching isn't as unpleasant as the urge to move because the movement relieves it. I wasn't unduly perturbed by twitching my way through a movie! A bit unsettling for others perhaps.

The main problem is insomnia, impossible to get to sleep with twitching and if the Pramipexole did work, then the early waking it can cause ruined sleep within a short time.

On top, I also tend to suffer generalised anxiety and if anything's a destroyer of sleep. that is.

I'd say RLS which doesn't ever allow you any more than 3 hours sleep on a "good" night is severe.

To answer your question, I now only take Gabapentin. I rarely have RLS symptoms at all, perhaps a few minor twitches for a few seconds.

Gabapentin does NOT cause augmentation.

Gabapentin is also recommended for RLS if insomnia and anxiety are significant. So Gabapentin works for me.

I still have some insomnia, but now it's more of a sleep pattern problem than a lack of sleep problem. I can sleep great between 8pm and midnight and between 4 am and 10am, but at darker times of the year, there's this gap. This might be another circadian issue, not RLS, I have always had this.

Gabapentin (or Pregabalin) are recommended as an alternative to dopamine agonists by the National Institute for health and Care Excellence (NICE). I've also read recent evidence that it can be effective for RLS.

This sounds like an advert for Gabapentin. Unfortunately, it doesn't suit everyone. This mainly seems to be a matter of the severity of symptoms and peoples tolerance of them. Inner ear problems can be an issue, so dizziness, nausea and balance problems can occur. Some people actually vomit. Some people gain weight.

The other downside of Gabapentin/Pregabalin is that they're not immediately effective like Dopamine Agonists. The first time I took Pramipexole at the lowest dose, it completely controlled my RLS.

The gabas may take a few weeks to become completely effective and there is more of a trial to get an effective dose. I think some people think it's not going to work and give up.on it too soon. The other thing is perhaps they don't realise that side effects wear off.

One last thing, be warned, if you decide to switch from Ropinirole to Gabapentin, it's not a simple or easy matter. You may get conflicting or misleading advice, even from doctors. The main thing, hopefully everybody will say is, you must NOT stop Ropinirole suddenly.

[CookiePooki]

Hi simlou.....RLS is awful. I've had it and have been using tramadol for about 4 months now; the last few nights I've been awakened with the "devil in the leg". I don't think there is any cure for it...so many posts say that certain drugs help for a while, then quite working altogether. I guess without a cure or a drug or something that can help, us peeps with it will just to go around with droopy eyes from lack of sleep. I'm giving it to the Lord and pray that it is His will to take it away for good.

[Ert223]

Sorry to hear it...I went and saw a neurologist he put me on clonazepam...worked wonders for like a year or so...then had back problems GP put me on norco...after a month of that the clonazepam quit working...So Neurologist put me on the norco and the clonazepam ...started getting severe cramping then went on valium. Started getting severe pain...with cramping went to see a vein doctor he

collapsed a bunch of veins...and that got rid of the cramping pain. So that did help. But I use Kratom on and off you cannot overdose on it...impossible. So mix that up with my narcotics and it works real well. And I use Near Infrared light.

Joov or Red Box has to be in the range of 800 900 nm. Anything out side of this range will not work. It is call Bio PhotoModulation....There is a ton of research in journal articles. When everything else quits working on comes the light...Oh yeah That Red Box is better than sleeping with a goddess. All it takes is ten minutes a day 1 foot away....and life is good again. I take a 1000 mgs of magnesium...some folks have luck with it some dont...I use it to protect the cells..from the effects of EMFS...Oh and apple cider vinegar to neutralize the Round up in the gut....that permeates everything...Will The USA govt outlaw it of course not.

[simlou]

Well, I gave in and went back to Ropinorole last night. I slept for 10 hours. My GP has put me on Gabapentil which I collect tomorrow to see if that works any better. The Ropinorole worked, but did nothing for the leg pain. So I'm also on a big dose of codeine for that. We'll see what the outcome is of all this. Totally fed up of the whole thing