Tortuous

[Firenze1]

I'm now in my 4th week (feels like years!) of reducing Ropinirole and taking Pregabalin. GP prescribed 50mg which I quickly increased to 100 and I am now taking that with 0.5mg Ropinirole instead of 0.15mg. The moment I sit and 'settle' (no chance!)for the evening off go the legs. I'm already very low due to family stuff and this is just adding to the pain, literally. Have I reduced the Ropinirole too much too soon? Should I increase the Pregabalin? I have/had a goal to be free from Ropinirole by September as I have a lovely holiday to look forward to however I'm currently struggling to look forward to August

[SueJohnson]

I am confused. You said you are taking .5 instead of .15. Did you mean 1.5? And did you reduce directly from 1.5 to .5? If so, yes you reduced too quickly. The usual advice is to reduce by .25 mg every 2 weeks and let the increased symptoms settle before reducing further. If that is too much then reduce by less and/or by a longer period of time. You can increase the pregabalin but it is unlikely to help until you have been off ropinirole for several weeks. If your holiday is in early September you will likely be suffering as it gets worse in the end so I would stop reducing several weeks ahead. Sorry for the bad news.

P.S. If I misinterpreted what you said and you did reduce by .25 every 2 weeks, then you might want to get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks after going back up to .75 mg and letting the symptoms settle.

[Firenze1 in reply to SueJohnson]

Sorry, yes I reduced to .5 immediately, contrary to the GP's advice which was to stop Ropinirole completely. I knew I had to wean myself off however wasn't prepared for how long it would take! Should I continue as I am - 100mg Pregabalin and .5mg Ropinirole or should I increase the Ropinirole a little? Sadly it seems I have a long way to go however I'm sure it will be worth it in the end

[SueJohnson in reply to Firenze1]

I would go back up to 1 mg.

[Joolsg]

There are 2 options.Fast withdrawal, like ripping off a plaster (bandaid in USA) over 3 weeks. You have to be fit and healthy for this. You could now drop the remaining 0.5mg and increase pregabalin to 150mg. Then you'll have 2 to 3 weeks of VERY severe all over RLS and little/no sleep. But the worst of it should settle by the end of August.

Then you can adjust pregabalin upwards after the 2 weeks to see what dose covers RLS.

Or, you could slow right down and reduce by 0.25mg or less and wait until RLS settles before further reduction. Time wise, that would mean you are going through the 2 week worst time at the wedding.

So either drop 0.5 now and have the worst 2 to 4 weeks from now, or delay the reduction.

I suspect you will have severe RLS whichever option you choose as you've already dropped 1mg in 4 weeks. Most people would take at least 8 weeks to drop 1mg. I think you might need an opioid to settle the withdrawals. Or medical cannabis.

Read today's posts and you'll see someone just went through withdrawal using 2000mg magnesium, gabapentin and morphine. I suspect the 20mg morphine really reduced their withdrawals.

Make sure your serum ferritin is above 100, preferably 200 as that can also help reduce severity of withdrawal.

[Firenze1 in reply to Joolsg]

Thanks for your support. It's much appreciated. I'm in the UK and am a little in favour of the fast withdrawal route however I'm also happy to be guided by good sense and experience. I'm reluctant to ask my GP for an opiod because I feel it's like telling them their job, which doesn't always go down well. Having said that, as they appear to know so little about RLS I'm kind of doing them a favour. I'll read the posts you mention as it always helps to know what has worked for others.

[Joolsg in reply to Firenze1]

Bear in mind RLS isn't taught at ANY stage in medical training. Your GP will not know about RLS or how dreadful withdrawal can be.I turned up sobbing at my GP surgery, begging for help during Ropinirole withdrawal. I was in a terrible state.

She actually said

'Drink some milk. We need calcium. We all get aches and pains as we age".

I knew then never to trust or listen to my GP ever again. That's when I started researching and reading extensively.

I called my MS nurse and asked her to arrange opioids from my MS neurologist for the withdrawal. My neurologist instructed the GP to prescribe tramadol. I took 50mg every 4 hours during the worst part of withdrawal. I suspect it didn't help because tramadol is the only opioid to cause augmentation.

My adult children sourced cannabis reefers for me and they did really help. They gave me 30 mins sleep after 4 days of zero rest. Cannabis is now legal so you can get it from private clinics.

Kratom is also used for withdrawals but it's illegal in the UK. It can however, be obtained discreetly as herbal tea from kraatje.eu

It's clear that some people have a smoother withdrawal whether they go slowly or not. Mine was horrendous. But some people don't seem to have any sleepless nights.

In case you have a tough withdrawal, show your GP this article by a world RLS expert, Dr William Ondo.

sleepreviewmag.com/sleep-di...

[Firenze1 in reply to Joolsg]

Thanks SO much for your reply. It's good to know it's not just my imagination and that GPs generally know zilch about RLS. I'm appalled at what your GP said! I totally get the sobbing and begging for help - coming close myself as of late. I have used kratom in the past but this was before the nightmare of augmentation. I now have some in powder form however its got to be made into capsules as it's like drinking mud otherwise. Maybe I need to get some cannabis. I'm due a follow up telephone consultation so I'll see what that brings. I'll certainly be asking for opioids however I'm not hopeful. I may ask to see her face to face so that I can talk to her properly and share the useful information I've obtained from this site, and also the article by Dr Ondo. Thank goodness for people like you at times like these ♥️

[Marilynn]

Hi Firenze1Sorry don't know about Roprinirole. I've probably been on it at some point over the years but I can't remember.

All I can say is that I was on pregablin for some time and I found it to be such a relief. I of course started on a low dose which did give relief for a short while but the strength was increased over time. I must admit that for me it was amazing and really helped. No restless legs for ages but I had to come off it because I was getting dizzy spells and it made my legs feel strange resulting in me falling a lot. So I would say if you haven't already tried it give it a go. Hope it works for you. Sorry I can't be much help.

[Firenze1 in reply to Marilynn]

Thanks for your reply. It's very helpful. Anything from anyone who understands helps!!