Taking Gabapentin and Ropinirole

[Strike26]

Question- following Sue’s excellent advice (which I originally debated- I was wrong!!!), my doctor, who knew little about RLS and now has plainly read the Mayo and other studies, agreed to put me on Gabapentin. Currently I am on 1500mg daily (spaced morning, afternoon and evening) but she has also said to keep taking the Ropinirole at 6mg - same spacing. In general terms I still get the symptoms breaking out, rarely extreme, mostly just mild and short lived. Six weeks in, leaving aside a major back problem, the RLS is transformed in a positive way. Is anyone else on this combination? Should I be concerned for any reason, especially bearing in mind that it is currently working and I am reluctant to risk upsetting the major progress that has occurred? Thanks everyone- what a great site this is. Alex

[SueJohnson]

I would slowly start reducing the ropinirole especially since you are taking 1 and one half times the maximum dose. Reduce by .25 mg at a time and wait for any increased symptoms to settle before reducing any further. I suspect you will be able to go to a much lower amount of ropinirole and still get the relief you are getting and may even eventually get off the ropinirole for good as obviously the gabapentin is working.

[Strike26 in reply to SueJohnson]

Yup- that was in my mind already as I wasn’t overly happy at continuing with a med that hadn’t worked. I’m not at all sure where my doc got this approach from- I haven’t seen it anywhere.

Thanks Sue.

[Joolsg]

Yes. 6mg Ropinirole is above the NHS max dose.Splitting the dose of Ropinirole will simply 'defer' augmentation. It WILL start up again. It's simply a matter of time.

Augmentation happens because Ropinirole binds to D2, D3 and D4 dopamine receptors. This initially works well and calms down RLS. Then, the D1 receptors start screaming out for their share of all this dopamine. Ropinirole can't bind to D1 receptors. They then ramp up, become very over excited and cause severe, all over body RLS.

All you are doing is delaying the inevitable. It would therefore be better to start reducing Ropinirole now.

Reduce the morning dose by 0.25mg every 2 weeks. Then drop each dose in the same way.

The gabapentin MAY help reduce some of the withdrawal symptoms, but most people need a low dose opioid.

Please read all you can. Educate yourself because GPs know nothing about RLS. If they did, you would never have been prescribed Ropinirole. RLS us not taught at any stage in the medical curriculum.

There is a reason these drugs are no longer prescribed by experts.

If you can get a referral to a sleep clinic, do so. Because when the augmentation ramps up again you will need someone who can prescribe the low dose opioids you may need to get you through. Sleep Clinics are also more likely to prescribe iron infusions, which is now first line treatment amongst experts.

[Strike26 in reply to Joolsg]

Yup - will go with that reduction. Only slight problem is that opioids, even at a moderate dose have no effect on me at all. Why that is, I have no idea. Thanks.

[Joolsg in reply to Strike26]

If you took opioids while on Ropinirole, they don't help because the D1 receptors are too busy screaming for their hit. It also depends on the opioids. Tramadol is the only opioid that also causes augmentation.

Oxycontin and codeine and oral morphine all have a short half life so can often cause mini opioid withdrawals and the main symptom is RLS.

The longer lasting opioids are therefore preferred. Buprenorphine and methadone. But in the UK, they are difficult to get.

Medical cannabis can also be very useful. I used it during withdrawal from Ropinirole and it was the only thing that helped.

[Strike26 in reply to Joolsg]

Thanks Joolsg - really useful advice. I’ll certainly be acting on it.

[VENEER]

Hi, My doctor gave me the same tablets for my RLs but having taken them for quiet a while I struggled with the lack of labedo and upon investigation found both can have an effect but more so with Gabapentin which I stopped and now my labedo is fine again.Vaneer.

[Spurdog1]

Strike26. I'd like to say something about you and your kind follow up. Whilst I have little experience (a blessing) in your plight, I am delighted that you updated us, also admitting your error. The way the internet reacts poles apart and getting aggressive, its such a treat that you confirmed Sue's advice, so nicely. Once again thank you Sue, where would we be without you.

[Strike26 in reply to Spurdog1]

hi- it’s what is so good about this site. No trolls, no fantasists, just discussion and advice. Brilliant and unrivalled in my opinion.

[fred6113]

I'm taking the same combination..all though not quite as much.. I've been on requip (ropinirole) ever since it came on the market.. I also take gabapentin.. but it's for my neuropathy.I first used Ultram and then added requip a year later..both worked quite well together... years later my Doctor weaned me off the Ultram once I started taking gabapentin/Lyrica...

This all took place over a 37 year span..

I have also added.. on the advice of a Doctor.. CBD and THC which helps immensely in controlling the spasms at night.. I prefer it over increasing the ropinirole.

I take 1mg of ropinirole twice daily and 300mg gabapentin twice daily

That's down from 6mg requip and 1200mg gabapentin a day

This all started when I was 33... I'm now 70...

Unfortunately RLS never goes away... All you can do is learn how to cope with the pain...

Pain is a good reminder that you're alive..

If you ever wake up pain free.. you'll know you're dead 😳!!!...

[Strike26 in reply to fred6113]

hi Fred- you’re beating me but not by much (66 years)!!! The past 10’years I have tried so many combinations of meds - none worked for more than a few weeks, or didn’t work at all. Then I found this site and the incredible people on it, and more options, especially the Gabapentin- it hasn’t stopped the RLS (yesterday was a bad day for example) but overall it has taken 80% away. Unfortunately, I also have a back problem (spinal stenosis) which is very painful. It is generally an age related condition but I can’t help wondering if years of tension with RLS is partly a cause (effectively the vertebrae move and press on the nerves). Anyway, as you say, it never goes away- I do like your final lines of “black humour” - my wife and I used the same when she had terminal cancer- it got us through many dark days and we became legends in the chemotherapy unit by creating the “naughty corner “ (each time we went we had a bit of a party- everyone joined in and 5 years on it is still talked about!!!). Next Friday is her “anniversary “ of passing and I will be delivering 24 cupcakes, as usual, for the staff, our heroes.