Ropinarole

[Jenkins1414]

I was on ropinarole for 10 years and progressed from 1mg to 3mg and it still worked for my restless leg and the only reason I came off it was because I couldn't sleep and had heard of augument in relation to these tablets. Since I have come off them nothing else seems to work for me ie Gabapentin Pregabalin and Tramadol. Do you think I was augmenting on ropinarole because I am wondering if I should try them again.

[Hidden]

Hi It's not possible to say whether you were suffering a u g m e n t a t i o n due to the r o p i n i r o l e unless you identify in detail what was happening.

You say it was still working and if that's the case it didn't sound as if you were suffering augmentation.

Insomnia can be due to ropinirole.

However, alternatively, if you had to increase the dose, then it seems it wasn't quite true to say it was still working.

It does seem as if it was slowly beginning to stop working and perhaps if you'd continued on it any longer, especially if you'd further increased the dose, then it's likely that eventually you would have suffered augmentation.

It's your choice whether you try ropinirole or another dopamine agonist (DA), again, you need to weigh up the pros and cons.

It's true that the gabapentinoids i.e.gabapentin or pregabalin don't work for everyone. They aren't quite as effective as DAs. Their advantage is that they don't cause augmentation.

The other things about the gabas is that they may be a disappointment for someone who's experienced the immediate effectiveness of a DA. They take longer to work and there's more trial and error with getting the dose right. Doctors are also less familiar with using the gabas for RLS than with the DAs. The gabas aren't licensed for RLS and there's less guidance available on dose and timing.

You have to be taking an effective dose of a gaba for 3 - 4 weeks before expecting them to work.

As effective dose of gabapentin is thought to be between 900mg and 2400mg. However, if more than 1200mg is needed it may be better to switch to pregabalin. Effective dose for pregabalin is between 150mg and 400mg. 2 - 3 hours before bed.

Opioids, like tramadol are known to be effective for RLS. I believe tramadol is fairly popular, but may not be the best . Oxycodone is used for RLS as is methadone or buprenorphine

Non pharmacological measures alongside medication, if not instead of shouldn't be ignored.

If your ferritin level is below 100ug/L then you may benefit from taking an oral iron supplement.

It is possible you have some mineral/vitamin deficiencies which if corrected, again with supplements, can improve RLS

These are magnesium, vit B12 and vit D.

There are a lot of things which can aggravate RLS, alcohol, caffeine and refined sugar, a whole host of medications and other health conditions.

If you are taking any other medication at all and/or have any other health condition, it's worth mentioning as these may be a factor in your RLS.

Diet can also be a factor, people report various diets as being helpful and it's worth looking into these. These include, low carbohydrate, low oxalate, fodmaps, gluten free, lactose free and some claim eating natural anti-inflammatory foods.

There's also various "devices" that some people find helpful for dealing with symptons including compression stockings, vibration pads, hot baths, epsoms salts, weighted blankets and so on.

I hope this helps.

[Jenkins1414 in reply to Hidden]

Wow thanks for all your knowledgeable information. I started on one ropinarole tablet at bedtime and then after quite a while I needed another because it had come on earlier and that lasted a long time until eventually I had to take a third one....so 1 at 2PM 1 at 6PM and another at bedtime and all this was over a period of 10 years. Thanks again for your reply.

[Hidden in reply to Jenkins1414]

If you found the symptoms were happening earlier, that is a sign of augmentation. If you start taking ropinirole again, it's possible that you would suffer augmentatiin again fairly quickly.

[OldHollow in reply to Jenkins1414]

What worked for me was when I found myself augmenting, I cut back on the ropinirole, and only took the “normal” dose when I absolutely needed it. It was a bit of a fight, but due to the fluctuations that seem to come with RLS I could use better times to keep the dose down and then still have a second pill if it was nasty. I went from 0.25-2mg in about 3 years before getting it under control and now I’ve been on 0.5mg for about five years, with 1mg on a bad day, with no further augmentation. I’ve also found the Adartrel brand to be the best (by some margin) for me in the process.

[Joolsg]

Are you taking any other meds, including OTC meds like anti histamines or cough medicine?

[Jenkins1414 in reply to Joolsg]

No nothing at all. My doctor put me on slow release tramadol but it doesn't seem to work well. It takes ages to go to sleep and it feels like a diuretic I am on and off the toilet 3 or 4 times a night. It seems to take ages to work for my rls and I dont get to sleep until 3am most nights. I will make another doctors appointment because I am wondering if I need more than 2 50mg tablets.

[Joolsg in reply to Jenkins1414]

Tramadol can cause wakefulness. If it’s not helping your RLS you may have to try the Gabapentin or pregabalin as Manerva advises. It takes around 3 weeks for them to become fully effective.

Also bear in mind tramadol can cause augmentation ( and I personally think it’s more likely to do so if you’ve already augmented on a DA like Ropinirole).

Withdrawal effects from Ropinirole can last weeks/ months after the last dose.

[Remeuno]

I went back on them and it's 6 years now.

[Jenkins1414 in reply to Remeuno]

Is that after augmenting first time.

[Hidden]

Augmentation is a "risk" of taking a dopamine agonists (DAs). The probability of suffering augmentatiom varies in relation to which DA you take, the dose and how long you take it.

Pramipexole has the highest probability of augmentation, rotigotine the least. It's possible that extended release versions are less risky. The higher the dose, the greater the risk. The longer you take the DA, the greater the risk. Having augmented before increases the risk.

These are probabilities, i.e. not everyone who takes a DA develops augmentation, so you may choose to take the risk.

Alternatively, as you don't say how much or how long you took gabapentin or pregabalin for, if it wasn't enough or long enough you could try these again.

Additionally, taking non pharmacological measures alongside medication is also worthwhile especially when the medications are problematical.

[Jenkins1414 in reply to Hidden]

I took gabapentin and was sure it brought on my rls but thinking back maybe I was still getting over the ropinarole. The pregabalin made me depressed and affected by bowels a lot so stopped taking it without weaning myself off and had terrible withdrawal symptoms especially the itching which lasted 3 weeks. I would try the gabapentin again but at the moment my doctor has changed my prescription for the tramadol so I will see how I go on. Thank you again Manerva for all the ideas you have given me.

[Hidden in reply to Jenkins1414]

Thanks for thia.

Gabapentin will not bring RLS on, if you were still withdrawing from ropinirole then gabappentin wouldn;t work so well.

I hope the tramadol works out for you.

[LoisTonya]

When I got to your position I switched to Pramipexole. I find it works OK for two or three weeks. When it is less effective I switch to Ropinerole for a few days then back to Pramipexole. At the moment this method works for me.

[Heatherlss in reply to LoisTonya]

Hi,

I have been trying something similar. At what doses do you make the switch ?

[LoisTonya]

I take 2 Pramexipole .008, then I.25 mg Ropinerole when my legs are getting worse

[Jenkins1414]

Thanks for your reply its always good to see how other people persevere with this awful affliction.

[Jenkins1414]

I wouldn't wish this disease on anybody but if the Queen had it I bet we would have a cure overnight!!

[sudokufan]

Hi I'm no expert but I took Ropinirole (up to 2 mg) for a couple of years but found eventually it wasn't working well and I was getting bad RLS in the afternoons and evenings. I found I did, however, get a few hours sleep after I took the pills at night time.

You'll have read about augmentation which is common with dopamine agonists, where the RLS symptoms get much worse. But I think it is also possible for something else to happen - that the effectiveness of the drug just wears off in time (ie months or years) so although it isn't harming you, you still aren't getting a reasonable quality of life. I think this is what was happening to me.

My neurologist suggested switching to a different dopamine agonist - there are various ones. I reduced and then stopped the Ropinirole (in my case only briefly!) and then started using Rotigotine (Neupro) patches, which slowly release the DA over 24 hours.. 3 months in, it's not perfect, but I feel there is quite an improvement.

We're all so different, but I only wanted to say trying a different DA can work for some people. But your doctor will know best. I do wish you the very best.

[Jenkins1414]

Thank you for your information. At present I am trying tramadol which my doctor prescribed and although not perfect it has improved my rls somewhat. I will keep in mind your suggestions for any time in the future should I need it.