Amputation?

[Legs-Eleven]

Just kidding, new here and been reading a lot so thank you all.

Been on ropinirole for 3/4 years now and it's not as effective (augmentation), so decided to come off it. A few weeks ago reduced from 1mg to 0.5mg for 2 weeks. Then I stopped, well I've not slept for 6 nights now and going out my mind.

I did speak to my doctor a few weeks ago and asked for pregabalin and been taking 150mg for 2 weeks now, doesn't seem to be doing anything. I did ask for some tramadol also but was refused (I'm in the UK)

Can anyone advise how long it will take for my legs to settle back to the way they were before I started on the ropinirole?

Also should I up the pregabalin dosage (my doctor is clueless and not advised anything) ?

If this doesn't settle soon I may have to phone my doctor and insist on some other medication, would tramadol be best?

Thanks

[Todge]

I am on day 10 after stopping Ropinirole. I will be honest, I don't know much about Pregabalin. BUT I barely survived the past few days without the Tramadol I was prescribed. I also didn't sleep for 2 full days and only an hour or two the third day. Now I am back to my usual 4 hrs of sleep a night. It was my mood that was the scariest for me. I was really really sad and depressed and had panic attacks. I used to march around the house like a zombie- exhausted but pretty much expressionless and mostly asleep on my feet, for a few days I would just sob and sob all night whilst marching. I hated feeling so out of control.

BUT... I am doing so much better now that I was a week ago. I have kept track of everything I took, how long I slept, how bad the RLS was and where and when did the symptoms start each day. I am slowly improving and finally think that I can actually do this. But send the new Mayo Clinic guidelines to your doc and see if that will sway them that you need an opioid for a while until things settle.

You totally have my admiration for making it this far pretty much on your own!!

[silkyreg]

Sorry to tell you that and Manerva will probably soon join in and disagree with me, as we always do on this topic, but I tell you what helps me best (and Manerva demonises): Pramipexol

[LotteM in reply to silkyreg]

I do disagree with you too, silkyreg, especially in the situation legs-eleven describes. S/he has been on ropinirole, a dopamine agonist (DA) like pramipexole. Thus tue meds you suggest is very similar to the one legs-eleven has been taking. Switching from one DA to another does usually only prolong the agony and other troubles, once you have started to have troubles with a DA. You may get many years of successful effects of the DA. It is now expected by the RLS-specialists, that sooner or -in your case- later, everybody will run into troubles with a DA and suffer augmentation, worsening of symptoms, including them spreading into the day and other body parts than legs.

The one and only completely effective way to stop and (partly) reverse augmentation is to stop taling the DA. Which is what legs-elevens has been doing and why s/he is not switching to another DA. I hope you understand. For backup, please read the recent updated management guidelines for treatment of RLS in the Mayo Clinic proceedings: mayoclinicproceedings.org/a...

[silkyreg in reply to LotteM]

I tried all other alternatives: restex, ropinirol, neupro, lyrica, ... and none of them really helped me, only Pramipexol does and yes, I had many times augmentation of it. I go off it, take some of the alternatives, suffer tremendously for 1-2 weeks but then my body is clean of Pramipexol and it works again.Well, I write it as if it is still my life but THANKS GOD I found out the parameters with wich I can calm down my legs so that I don't need any medication anymore. I still have RLS but in a mild form that I can live without medication. But I have to obey the parameters or I'll go back to hell.

[LotteM in reply to silkyreg]

Are you aware that restex, ropinirole and neupro are all also dopamine agonists? And Lyrica/ pregabalin takes several weeks to start working, and doesn't seem to work as well for people who have augmented on DAs.

Anyway, I was mightly pleased for you to read that you now control your RLS by following your oen set of rules / guidelines. I sincerely hope they will keep the RLS at bay. 🤞🏼

[Joolsg in reply to silkyreg]

Pramipexole is ok but only of kept at the minimum dose and never increased. Sadly, most DAs work brilliantly at first, then stop working and the Doctor increases the dose and augmentation sets in.DAs are no longer first line treatment amongst experts. For a very good reason.

[Munroist]

I took 300mg pregabalin a day for a year for neuropathic pain and my understanding was that it wasn’t a particularly high dose. I started on 150mg and it made a difference but it worked better at 300 and personally I experienced very few side effects and although v slightly woolly at times, most of time I felt normal. My RLS and sleeping was definitely better while taking it, but it wasn’t a total cure.

[Spurdog1]

I know it's a joke legs-eleven, but I don't think it would work if one went to that extreme. See I know a man (actually best man at my wedding) who had his leg removed above the knee. He told me then, he often gets itching on the leg thats not there. So he cannot scratch it anyway, I presume the nerves are still sending signals above the amputation for the area below the amputation.

Only saying....LOL

[m1946]

HiIn my personal experience I now rely on Tramadol - two 50mg capsules taken at around 8pm. By & large I receive 6 to 8 hours sleep!

I was taking 0.5mg of Ropinirole for I guess about 6/7 years. 0.25mg was initially prescribed rising after a few weeks to 0.5mg.

I have endured the many negative responses from doctors and their 'opinions'. My doctor wrote to the neurology dept of Southend General Hospital who wrote back to my doctor recommending an increase in my prescription of Ropinirole to 1mg.

There is very little knowledge of RLS amongst the NHS!!

As we are aware on this site NICE does NOT recommend Ropinirole and certainly not an increase!!

I was complaining of augmentation and a person on this site recommended to try and obtain a referral to Guys sleeping clinic.

Eventually after trial & error!! A Mr Murphy from Guys took control of the situation and to my delight I received at last a meaningful programme albeit I was recommended to maintain the Tramadol at the 100mg level. I was concerned about addiction although I do not have an addictive personality and the consultant said that any dose under 400mg should not pose a problem

At least now I have a Mr Murphy who is knowledgeable and understands the RLS illness

[Elffindoe]

It seems you may have weaned off the ropinriole much too fast hence now suffering for it. It should pass though.

The other main recommendations for augmentation are that you have your iron levels checked and if ferritn is below 100 consider iron therapy.

Any other medications you take may be making your RLS worse.

[Deeperside]

I’m in the U.K. also, and my GP reluctantly prescribed me a short dose of 50mg tramadol to come off pramipexole, and it was hell, though I did stop abruptly, but the tramadol provided zero relief, and like you, I never slept for days. I’ve no experience with pregabalin, or gabapentin, but I think I read on here that these medications don’t really have a therapeutic effect until after 2-3 weeks off the dopamine agonist.

However, I stopped Pramipexole three months ago cold turkey, using Kratom, which is I believe illegal to buy here in the U.K.not to possess, but very easy to order online from Holland. Kraatje.com is the supplier I use. It completely eliminated withdrawal symptoms, and I am still taking it nightly and works a treat.

I find the red vein Borneo the best.

Even if you just used it temporarily, it will get you off the ropinorole easily, and then you can find the best the dosage of pregabalin.

I feel bad for you, as coming off these dopamine agonists can be a living hell, but was completely painless with kratom.

Hope things get sorted for you soon.

[Joolsg]

Pregabalin takes 3 to 4 weeks after the last dose of Ropinirole to start to be effective. Also, it can take a few months for DAWS to settle down. It took me about 6 months to find a combination of meds that gave me daytime relief and some sleep so don't give up Make sure you raise your serum ferritin above 100, preferably 250 as that can really help and don't take Pramipexole or any other DA as you'll quickly be in the same situation.

Sometimes a combination of meds at low dose works better than one med at high dose.

Medical cannabis is also available and it helps with sleep and often with RLS. Available from project-twenty21 but you have to pay for it.

If your GP refuses opioids, ask for a referral to a neurologist with experience of RLS.

[Legs-Eleven]

Hi everyone, thanks for all your responses. I'm doing a bit better since my first post, managing to get some sleep. Can get about a hour at a time before waking up and then find it best to get up and do something before trying to settle again, so getting a few hours a night.

I stopped taking the pregabalin, think this may of been making me extra tired and drowsy and making the twitching worse. I may give it another go in a month or so, depending on how I get on - I'm not taking any medication at the moment. I timed this because of holiday from work, but back to it on Tuesday so wish me luck.

I did have a blood test a few years ago when I started the ropinirole, they said everything was fine, but will try and get another and ask about iron.