Roprinole

[Caravan24]

I have taken roprinole for 15 years on and off. Just wondered if anyone has prevented augmentation by weaning off over few days and having 2 week break every six months. I have done this several times as soon as 1mg dose starts to be effective. Stopped it now for 2 months but symptoms are very difficult at night and I am undecided wether to start it again. Tried gabapentin but only stops burning feet not leg movements

[Madlegs1]

There has been discussion on this before.Some people find it successful.

However, I think it is almost inevitable for the vast majority that they will augment at some stage.

Although some lucky ones get 10 years without problems.

Cheers.

[SueJohnson]

Were you taking the gabapentin while you were on ropinirole? Or were you taking it immediately after you stopped ropinirole while you would be suffer.ring withdrawal? You would need to have several weeks go by after you stopped ropinirole before it would be effective and you would need to take it in divided 600 mg doses as I outlined before. Also perhaps 1200 wasn't enough so you could after that time to increase it by 100 mg every couple of days until you find the dose that controls your symptoms. If all this was true and you try again and get to 1800 mg, then try switching to pregabalin. It is a straight switch to 300 pregabalin and you can take it all at once. then increase by 25 mg every couple of days until you get to 450 mg. If that doesn't work then slowly wean off it and either try dipyridamole or a low dose opioid.

[Caravan24 in reply to SueJohnson]

I live in UK and had a fight to even get 600mg!!! Been off all da's for nearly 3 months

[SueJohnson in reply to Caravan24]

If you had to fight to get gabapentin you might refer your doctor to the Nice Guidelines cks.nice.org.uk/topics/rest... and to the Mayo Updated Algorithm on RLS at at Https://mayoclinicproceedings.org/a...

Since I live in the US I can't see the Nice Guidelines so I don't know how much it says there but other posts say for pregabalin it is 450 mg and they are pretty much interchangeable and 450 pregabalin is equal to 2700 mg of gabapentin.

[ChrisColumbus in reply to SueJohnson]

Those NICE guidelines. Unfortunately they know starting doses but not titration/dividing etc

"The use of gabapentin for restless legs syndrome (RLS) is off-label.

Initial dose: 300 mg if the person is under 65 years old and 100 mg if the person is over 65 years old.

Titration: maximum recommended dose for RLS is 2700 mg. CKS did not identify any specific guidance on dose titration for use in RLS. However, for other indications it is recommended that gabapentin therapy is initiated at 300 mg once daily on day one, twice daily on day two, and three times daily on day three, followed by further increases in 300 mg/day increments every 2–3 days to the maximum dose if required"

[SueJohnson in reply to ChrisColumbus]

That's for pain as it is used for pain too. Obviously it is not needed 3 times a day for RLS.

[ChrisColumbus in reply to SueJohnson]

Indeed, and that's the problem: GPs untrained in RLS follow NICE and NHS guidelines. RLS-UK try to get changes, but it's like wading through treacle.

[ChrisColumbus in reply to SueJohnson]

NICE does at least acknowledge DA augmentation and ICDs as of this year:"What drugs should I consider to treat restless legs syndrome?

First-line recommended drug options for people with frequent or daily symptoms are either:

A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications).

Before commencing drug treatment, ensure the person is aware:

Of possible treatment complications relating to dopamine agonists. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs).

That if a dopamine agonist is taken, the person (and, ideally a carer or close family member) should be warned about the possibility of an ICD developing. Symptoms of an ICD should be sought on each review consultation.

That treatment for idiopathic RLS aims to control symptoms, and is likely to be lifelong. However, it is reasonable to have short drug holidays every year to see if a remission or easing of symptoms has occurred.

Drug dosages should be kept to the minimum required to ease symptoms as the higher the dose, the greater the risk of augmentation."

[ChrisColumbus in reply to SueJohnson]

It goes on:"Factors that may influence the preferred choice of drug include:

A dopamine-receptor agonist is generally preferred for people with severe symptoms, who are obese, have comorbid depression, are at increased risk of falls, or have cognitive impairment.

An alpha-2-delta ligand is generally preferred for people with severe sleep disturbance (disproportionate to other RLS symptoms), comorbid insomnia or anxiety, RLS-related or comorbid pain, or a history of an ICD.

As alpha-2-delta ligands pose little or no risk of augmentation, if clinically appropriate, they may be preferred first-line where the physician is inexperienced in long-term management of RLS.

Consider rotigotine transdermal patch if the person has significant daytime symptoms as it has a long duration of action.

A weak opioid (such as codeine), taken intermittently or regularly (depending on symptoms), is an alternative, particularly for people with painful symptoms of RLS. However, take into account the risk of opioid dependence.

For people with significant sleep disturbance, consider a short course of, or intermittent use of, a hypnotic (benzodiazepine or Z-drug). For more information, see the CKS topic on Insomnia.

For people prescribed ropinirole they should be monitored regularly to assess for the possible development of mania as symptoms can occur with or without the symptoms of impulse control disorders."

[SueJohnson in reply to ChrisColumbus]

I am sure glad I live in the US.

[ChrisColumbus in reply to SueJohnson]

🙂 Although the US (compared with the UK) is a big place and despite the numerous experts we still read about plenty of bad US cases, such as the recent posts by C82021:

"My last two neurologist visits being from two separate DR's. One prescribed Pramipexole, the other Ropinirole. Both are "very" perturbed that I don't agree with them. This is in my records that I don't listen to their advice."

[SueJohnson in reply to ChrisColumbus]

At least we can easily change doctors and the doctors don't refuse to look at the Mayo Algorithm because they won't look at what US doctors do or believe.

[ChrisColumbus in reply to SueJohnson]

True, most health services worldwide are far from perfect, with access to services patchy and/or dependent on money one way or another. Those with money - or who have sufficient insurance - tend to get better services, while the poor and less educated struggle. Too many doctors, specialists and systems either ignorant of - or just ignoring - expert advice add to the problem. One can see the effects of this internationally reported all the time in this and other HU forums. It's not just RLS sufferers who are let down.

[Joolsg]

I know some people try this and it can work for a while.But inevitably, the D1 dopamine receptors will scream out for their dopamine hit and augmentation rears its head.

Plus, the top experts are now clear that dopamine agonists cause permanent damage to dopamine receptors, from which many people never recover. The longer you're on them, the higher the risk.

So, your choice, but it sounds like Russian Roulette to me.

[GaryHB]

Hi, in my experience, coming off a DA for a short while never prevented further augmentation. I used to come off Pramipexole after a month or 2 when I began to augment and take Codeine for a week. Then back on Pramipexole. But I would augment in a month or so and had to keep alternating. I did it for decades until nothing was working well.

[Mongolia2020]

I did this before I understood augmentation and before I found this site. Mr sleep dr told me I needed a drug holiday and then go on gabapentin instead of going back on DAs but gabapentin never worked. Nor did anything else. So I always went back on DAs. I did this 4 or 5 times, but found that the times between requiring a drug holiday became shorter and shorter and I finally decided it was just too hard on my body and I would have to get off DAs once and for all.

Now I am off DAs, but believe my dopamine receptors have been damaged and are still not repaired after 6 months free of DAs. I understand it may possibly be irreversible.

So my humble opinion is that you will most likely not escape damaging your dopamine receptors by taking these drug holidays - it may just be delaying the inevitable, but also making it less likely that your receptors will heal the longer you keep going back on DAs.

[JunieBJones]

Please, with the guidance of a neurologist who is familiar with RLS and how ropinirole causes augmentation, get off it. I was on it for 20 years and found out last that it causes augmentation. I had gradually had to dose increased as my legs worsened and was on 4mg 3 times per day. It took me 10 months to finally get off the last mg with the help of an opioid. If you can go off of it for periods, maybe weaning off may not be as bad. I don't know where you're from but in the US meds like gabapentin and opioid are being used to treat it. Google Mayo Clinics algorithm. Good luck!