Ropinarole

[Blavit]

I have been weaning myself off ropinarole which I have been on for 10 years. I slowly took less and less after being put on pregabalin by my doctor and have just finished the last bit of ropinarole after cutting the tablets in half then quarters and I have not took any for two nights now and I have been up both nights walking the floor with bad restless legs. I expected this but I am wondering how long I have to put up with this before it settles down and the pregabalin works on it's own. I have took tramadol to help but it is doing nothing.

[Madlegs1]

It can take a while to get over the withdrawals, especially after being on the Ropinerol for so long, and possibly at a high dose.

The Tramadol should be helping. Is it the ER version?

What other meds are you taking, or supplements?

Are you avoiding known triggers?

[Blavit in reply to Madlegs1]

I only take magnesium tablets and a B multivitamin and oral iron of my doctor. The tramadol tablets are hydrochloride capsules. I will carry on and persevere because I wont go on ropinarole again. Thank for replying.

[Madlegs1 in reply to Blavit]

I suggest you take the magnesium at least 2 hours separate from any other medications, as it can interfere with their action. ( If you are not doing that already)🤪

[Blavit in reply to Madlegs1]

Ok will do thank you.

[Hidden]

Hi I can't offer any practical suggestion except to do all the things RLS sufferers do, sleep hygiene, avoid triggers, avoid other medications that exacerbate RLS etc.

I recently completely stopped taking Pramipexole after taking a very high dose for nearly ten years. I'm now just taking Gabapentin.

Like you, I cut tablets in halves and quarters and started the Gabapentin before weaning off the Pramipexole.

I was led to expect withdrawals to happen one or two days after totally stopping.

I believe there is no fixed rule about this, but I have read that withdrawals may last from 10 days upwards. I've also read it can be a few weeks upwards. Neither is very reassuring, but at least gives you a minimum time.

I can only encourage you to stick it out, for at least a few weeks, (IF it takes that long).

I can't actually recall how long I've been without Pramipexole now, at least 4 weeks. I have no RLS symptoms most nights and none in the day. last night I slept about 6 hours, went to the toilet then slept another 2 hours.

When I was taking Pramipexole, if I forgot to take it, I'd have severe RLS symptoms within a couple of hours and no sleep that night. Tuesday last, I forgot to take the Gabapentin. I didn't realise until Wednesday I didn't notice any difference on Tuesday night!

The benefits, for me, of stopping the DA have been truly amazing. When I think of all the sleep deprivation I've suffered in past years, and could suffer in future, compared to possibly only a few weeks of it to get to where I am now, it is truly well worth it.

[Blavit in reply to Hidden]

Ok thanks Manerva I will carry on and hope I am one of them that gets through it quickly but if not I will persevere because I will never go back on ropinarole even if it takes all year!!

[Parminter in reply to Hidden]

Manerva, may I ask what side-effects you have from Gabapentin?

I have never taken it, partly because it has such a long and daunting list of possible harms. And my doctor thinks I am a very bad candidate for anti-convulsants, although he did not explain his views.

I would appreciate a personal view.

[Hidden in reply to Parminter]

The worst side effects I have ever experienced from Gabapentin were last Thursday morning.

I think there's an explanation for that. When I started on it I built up slowly by increments of 100mg. However that was when I was taking it 3 X daily for nerve pain and I ended up on 300mg 3 X daily. When the nerve pain settled I reduced to 100mg 3 X daily and because "midday" isn't always convenient I started taking 100mg morning and 200mg at night.

In the process of wirthdrawing from Pramipexole, I got it increased to 600mg a day. 2 X 300mg daily, again increasing from 300mg to 600 mg in 100mg steps.

Shortly after stopping Pramipexole, I decided it would be better to take the whole 600mg at night. I did this slowly i.e. taking the earlier dose later and later until the two times coincided.

The reason I write this is becasue I have never suddenly increased the dose I take at any one time.

However, last Tuesday night I forgot to take the 600mg. If I'd been on Pramipexole still, I would have noticed my mistake within hours, but that night, I noticed no real difference. It was only Wednesday evening I realised I'd missed it and on Weds night I took the whole 600mg.

The change from nothing one night to 600mg the next may explain the severity of the side effects on Thursday morning which lasted 2 - 3 hours., and were easily bearable.

Side effects I've noticed which I definitely attribute to Gabapentin are -

In the morning

Slight dizziness,, sometimes slight nausea before eating.

A little "thick headed".

The worst - a tendency to lose balance, although I've never actually fallen completely.

I also have a tendency to walk into things, although I used to do this before. I think I have prehensile elbows! It's never "full frontal"!

When I started on 600mg I weighed 92 Kg and had weighed that for at least 3 years before. I simply reduced my food intake and now I'm 83 Kg.

I realise it might vary a lot between individuals, this might be simply due to reacting differently. It might also be partly due to a persons willingness to accept some side effects. I'd say compared to Pramipexole, for me Gabapentin is a dream.

When I read about the side effects of Gabapentin, I admit I was frightened by the potential side effects, bur the nerve pain persuaded me,

I have read that Gabapentin is commendable because -

a) it is not metabolised, just excreted through the kidneys so causes no metabolic stress

b) has very few interactions with other drugs.

I also read that side effects generally only become significant in doses of 900mg or more, some say 1200mg.

Of further note, I recently read that the more Gabapentin you take the less of it you absorb, so if you take 300mg you absorb 60% of it (180mg), if you take 600mg, you only absorb 40% of it (240mg) increasing the dose after a certain point doesn't necessarily make it any more effective. My conclusion is if lower doses don't work then there's probably no point in taking doses that are more likely to produce side effects.

I'd say it's probabaly worth a try, if nothing else.

[Parminter in reply to Hidden]

Thank you for your time and trouble, I appreciate it.

I think it is time I tried. Now I have the courage!

[Abookwriter2 in reply to Hidden]

Thanks, Manerva, for the review. You know I was taking gabapentin (100 mg) and then one .25 of ropinole with gabapentin til I didn't need gabapentin anymore. Everyone has different side effects but gabapentin-even that low dose-gave me an uncontrollable urge to eat junk and I'm a purist and not used to uncontrollable urges to eat :(. Recently I've been taking just 1/2 the ropinole, not gabapentin and seem to be doing ok-no rls. What a relief.

I have been strict about no sugar, bread and don't eat alot and early for dinner. I do not drink alcohol either.

[Hidden in reply to Abookwriter2]

A shame you had such a reaction to the Gabapentin. The increased appetite is a known side effect.

I hope the Ropinirole continues to work for you.

[Hidden in reply to Hidden]

My worst reaction to Gabapentin was hair loss. I began to shed like crazy. There are many articles on the internet about this. Obviously this doesn't happen to everyone, but it made me leave it forever!

[Hidden in reply to Hidden]

Wow, never heard that. Managing to keep mine so far!

[Joolsg]

It really seems to be different for everyone but the average time for the leg jerks and lack of sleep seems to be 14 days after the last dose. The pregabalin takes 3 weeks to be fully effective, but hopefully it will give you some good night’s sleep soon.

[Blavit]

Thanks Jools I will persevere and hope it only lasts a short time because I will never go back on ropinarole again.

[Joolsg in reply to Blavit]

I absolutely agree. I went through withdrawal from Ropinirole in 2016 & would never go on another DA. Dr Buchfuhrer believes DAs permanently damage the dopamine receptors and I think he’s right.

[Abookwriter2 in reply to Joolsg]

Joolsg, what do you take for RLS? Is .25 mg of ropinole ‘too much?’

[Joolsg in reply to Abookwriter2]

Hi- no, 0.25mg is a very low dose and if it is working for you, there is no reason to stop taking it. Just be aware of the signs of Augmentation.

[Joolsg in reply to Abookwriter2]

I now take OxyContin and pregabalin which give me around 90% cover.

[Abookwriter2 in reply to Joolsg]

Whew, thanks. It's been my goal to find a solution by diet, supplements or peptide therapy and not get into enough dosage to keep ratcheting up ropinole. Taking gabapentin caused unusual mind effects for me.

What a crazy dis-ease!

[Parminter]

A quarter tablet is still quite a lot. I have found that it is possible to cut the teeny tablet into six parts with a razor-sharp knife. Why not try that for a few weeks?

Don't feel beaten by going back on to the Monster for a while. Your brain is addicted, and it is not your fault.

It can take many months to do this successfully.

ncbi.nlm.nih.gov/pmc/articl...

[tweedy66]

I'm awake right now with the same !! Was on 6mg of ropinirole and like you slowly cut those "little buggers" down to 2 mg now with 300mg lyrica. I'm struggling these past few nights. I saw a specialist in Boston back in May....Dr, Winkleman at Mass General......I may be calling him to see what we can do for some different meds..???

[LotteM in reply to tweedy66]

Dr Winkelman is a very renown ed RLS specialist and researcher. Please do call his office when you need advice.

[Sara_2611]

Its like with any drug if you have been taking it for ages & used to it like Madlegs 1 said it can take a while to get over withdrawal symptons

[Scattypatty]

I can totally relate to what you are going through, I have also just stopped taking Ropinirole altogether, this will be the fifth night. I started building Pregabalin up to replace Ropinirole and am now taking 125mg. What I’m finding is my legs are so much better during the evening but go crazy during the night. I have got some Co Codamol for the pain but they don’t seem to help my legs. I take the Pregabalin about an hour before going to bed but they don’t seem to be helping, is this because they haven’t started taking effect yet or should I be taking the Pregabalin at a different time.

I would be interested to know how you are doing. I feel like I’m never going to have a nights sleep again, my settee has become my new bed.

P.s. it’s 1.30 in the morning now, same old thing. My legs were great during the evening, took my Pregabalin at about 10pm in bed my 11pm and up since 1.30. I will be awake all night now, my legs are raging.

[Blavit in reply to Scattypatty]

I am in a similar position I feel that nothing is helping. I have gone 17 days now with no ropinarole and when I took the gabapentin it seemed to bring the rls on so I switched to pregabalin and that pretty much did the same. I like you have had no sleep some nights all night because the rls has gone berserk even going into my arms some nights. I have even thought about taking a bit of ropinarole some nights but I have not done thankfully. I slept last night with no symptoms only because I had some old 20mg morphine tablets that were actually out of date from when I had a knee replacement but they worked. I will have to go back to the doctors but I am at a loss as to what they can offer. It's a complete nightmare and I am sorry not to have given you some hope. Let me know how your doing and if the pregabalin is helping. X