The neurosurgeon I saw in Liverpool has recommend I stop taking Ropinirole, as although it helped RLS a lot at first, I find that now I can only get a few hours sleep on it and the RLS returns quite early during the day (augmentation?). So I have to reduce from 2 to 1 mg per night for a week, then stop completely for a week. Then I can start Rotigotine patches. I know some on this forum say these "dopamine agonists" are not good, but this is what my specialist and my GP recommend (this discussion was on the phone due to the current crisis), so I want to follow their advice.
1. Any advice for coping with reducing, then stopping Ropinirole? From reading other posts, I'm rather scared.
2. GP on the phone today suggested I massage my knees/thighs (where & when my problems are worst) with oil - seemed to agree a magnesium product might help. Any suggestions as to what to use?
Best wishes to you all.
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sudokufan
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I won't tell you to change your doctors for more knowledgeable ones.
So I won't.
The general advice is to go down slowly and gently. That would be by 10% a week. I don't know how practical that is for that medication. But allow your body to adjust to the loss of drug before going down again.
You are being transferred from one DA to another, so you will be phoning those ##*"+#££££s again with the same issues.
What will they have to offer you then?
Your best bet is to ask for an Alpha 2ligand ( Gabapentin or Pregabalin) which are generally the next line of defence.
I'm really sorry that you are being put through this unnecessary torture, but you will get through it.
Massage your knee thoroughly, as you will need it good and strong to be able to kick those id*¥$¢ts just where it hurts them most.
I'm not advocating violence, since their bums are well padded, I'm sure! 😷😆🤪😎
Thank you Madlegs. Maybe your expletives need more explanation - I assume you are talking about my doctors/medical advisors? 24 hours into my period of taking half my previous DA, I haven't slept very well but I'm coping OK. My Consultant Neurologist says that he would "consider giving a drug free time to counteract the effect of augmentation with dopamine agonist or consider changing to a different dopamine agonist etc etc"
I respect his view. Hoped I might get a bit of encouragement from the forum - but I'll give it time!! And indeed I do wash my hands with soap, but won't follow the advice a neighbour of mine put out on social media - TO ALWAYS PICK UP YOUR MAIL FROM THE HALL CARPET USING RUBBER GLOVES OR TONGUES. (Slip of the tong?)
Weird!
Ropinirole, as you know, is a dopamine agonist.
Rotigotine, as you know, is a dopamine agonist.
If you're switching from one dopamine agonist to another why do you have to stop the first, for a week, before starting the other?
I won't comment on your doctors.
If you have to switch from.one DA to another, you don't have to stop one before starting the other.. This can be done by taking both at the same time, reducing one, while increasing the other.
Gabapentin or pregabalin are recommended for RLS as an alternative to DAs and don't cause augmentation.
Assuming you live in the UK, you could refer your doctors to the NICE guidelines for RLS which clearly state this.
Hi Manerva - good to hear from you. As I said to Madlegs, I was hoping to get some cheer from the Forum, but I'll consider the points you both made. My previous GP has left and the discussion I had with my new GP (a senior member of the practice) was based on advice from a Consultant Neurologist I had seen. I was lucky to get a telephone appointment with a GP really - UK doctors are in short supply due to Covid 19. The GP may have wanted to make a conservative decision at this time because we can't meet in person. My previous GP had mentioned to me the possibility of switching to Gabapentin or Pregabalin, but said if I did that I would have to stop the Amytriptiline (20mg) that I take for chronic back pain - my 74 year old back being, technically, somewhat knackered. I know some on the forum say this latter triggers RLS, but I don't find it makes any difference. I've had RLS to some degree for 60 years now, have taken Amytriptiline for maybe 8 years , and it's only in the last couple of years the RLS has become unbearable.
My screen is showing a clear green sign to say "Follow your doctor's advice", and I'll do that. But thanks for the link to the NICE guidelines - I'll read them in more detail when I've had a good night's sleep.
And I will consider the preggi/gabblie things and discuss these with my new doctor when I can. He sounds intelligent and approachable.
Hope you're coping with the Coronavirus restrictions in the UK. I need my daily exercise and plenty of distractions, so the rules can be a bit of a challenge. But I'll back our doctors and we'll pull through in the end I guess - even if we are just Brits!!!
I used to take amitriptyline for nerve pain. When I switched to gabapentin, not only did I stop the amitriptyline, I didn't need it. Furthermore, I've had better relief from the nerve pain from gabapentin that I did from the amitriptyline.
In fact, my GP prescribed the gabapentin because the amitriptyline wasn't working. He didn't know, nor did I at the time, that it could be used for RLS as well. When I found that out, I reduced and stopped taking pramipexole. Goodbye augmentation!
You have to have some trust in your doctors, I agree. However, just to push it a little, stopping the ropinirole a week bfoore starting the rotigotine will probably delay the augmentation, but it's possibly inevitable.
In the meantime, during the week, you will be suffering withdrawal symptoms.
I won't comment on the advice of your doctors. When I went to the sleep clinic they tried to put me on the rotigotine patch. I refused. I had been suffering so badly with augmentation having been on ropinerol since 2005. I felt that inevitably I'd suffer again if I switched to the patch. My doctor listened to my reasons and didn't argue with me.
So he put me on gabapentin instead. I'm still taking ropinerole and will be tapering down. I'm currently taking 2 mgs in the evenings. My doctor has given me 0.25mg tablets and I will taper down by 0.25mg every 2/3 weeks.
I would urge you to think about whether switching from one DA to another is a good idea. That said, you might be one of the lucky ones where it may work for you.
Thank you for your reply. At the moment I'm coping with just taking 1 mg Ropinirole instead of 2 - but it's only the first day!! I've only been on the drug for about 2 years. Wish me luck, and I wish you good fortune too! Thanks again.
Hi, I’ve been taking Ropinirole for about eight years. I started at 3mgs and have weaned down to 1mg over the last six months. I’m not an expert, but from what I understand, the final reduction from 1mg is the most difficult. My physician has ordered .25mg pills so I can reduce very slowly, probably over a period of three months.
Gabapentin has been helpful, but I won’t really know how to treat this until I wean off Ropinirole. The augmentation started about two months ago and it’s driving me insane!! These DAs are horrible.
Thank you for your reply. My GP won't allow me more than 2 mgs Ropinirole per night. I'm glad it worked for you for quite a long while, I've not been on it longer than 2 years I think, and I too may have augmentation. I'm having some good nights and some bad, so will keep my fingers crossed! - (and legs probably!!)
I wish you luck and hope that the withdrawal is bearable for you. If it isn't, it might be an idea to see if you can get hold of lower dosage tablets so you can wean yourself off more slowly. Good luck.
As a fellow scouser I’m disappointed with the advice of the doctors and neurologists in Liverpool. I expected better of them.
I agree completely with Madlegs and suspect you’ll be in the same situation pretty quickly on rotigitone.
I was offered it by the doctors at King’s College London after augmenting on Ropinirole. By the time I saw them I’d gone through withdrawal following the advice of people on here and no way on earth would I ever touch another DA.
I would push for pregabalin/ Gabapentin and then you could reduce the amitriptyline.
Whatever you decide to do I wish you well but bear in mind the vast majority of British neurologists know hardly anything about RLS ( my MS neurologists have confirmed this to me) and are unaware that the latest research ( all in the USA) is against DAs.
Withdrawing from a dopamine agonist like Ropinirol is difficult, I just did it a month ago after being on the drug for six years. Works great for the first couple years and then the augmentation starts . tapering off the drug for me was about managing the anxiety of not having enough sleep once I realize that you can function on very little sleep for a few weeks made it easier. I’m working with Johns Hopkins and they recommend never doing dopamine agonist of any sort going forward. I have fairly severe RLS at this point, and just started treatment with low-dose opioids. I’m still in the early stages of the treatment, but it seems to work well. no side effects yet and doesn’t affect my ability to work in executive management of a high paced company.
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