Swapping pramipexole for Ropinerole

[Sheelaghj]

Hi everybody! My consultant is trying to get me off the pramipexole/ Oxycodone combo I have been taking, and on to Ropinerole . I just wanted to know if the starting dose of Ropinerole(0.25 mgs) is equivalent to the basic 0.088 mg dose of Pramipexole? I did the swap yesterday, and I was literally up all night with my legs. I am due to increase the dose of Ropinerole to 0.5 mgs tomorrow and am hoping that will improve things. Does anyone have experience of swapping these 2 drugs? I would love some information. Thanks xx

[Joolsg]

Why does consultant want you off pramipexole/oxycodone? That is key to whether switching to Ropinirole will help. have you stopped the oxycodone as well?

If the pramipexole has simply stopped working & doesn't help your RLS anymore, the switch may work when you increase Ropinirole slowly to 0.75/1mg.

If you are switching because your RLS has worsened ( symptoms getting worse, starting earlier and/or moving to different body parts like arms & back - Augmentation) then switching will not help at all. That is because if you have augmented on one DA you will quickly augment on another.

You shouldn't just stop Oxycodone- it should be reduced slowly.

[Joolsg]

Shelagh,

I've just read your previous posts and see you have been on Mirapex, and then Pramipexole before and that you augmented on both.

That means you need to change your consultant as he does not understand RLS. Switching between DAs only works if you have NOT augmented.

You need to get off Pramipexole and increase the Oxycontin/oxycodone.

You will not sort out your RLS until you do. I see you have tried to get off Pramipexole before, but you need to find a doctor or consultant who can help you do this.

Do not start on Ropinirole- you will repeat the torturous cycle you have been on for over a year.

[Sheelaghj in reply to Joolsg]

Hi Jools! Thanks for your advice. It's impossible to explain where I am, unless I go back to the beginning. So..... I was on Pramipexole for years, but luckily never increased the dose to more than 2x0.088mgs per day, as I am a nurse, and had worked out for myself that the medicine itself, had the paradoxical effect of makeup no the condition worse. The Drs didn't even seem to understand Augmentation then! Anyway, eventually, as I found the drug wasn't being as effective as it had been, I added Tramadol at night which seemed to work fine for quite a long time. At that point, I was working, and living a pretty active, normal life. Things only started to go really wrong, at the beginning of last year, when I decided to get myself off the Pramipexole, as I was having to increase the Tramadol at night and it was clear that the augmenting effect was just getting worse. Well, then I went through weeks of hell trying to come off these drugs, and eventually went to the GP(luckily enlightened, and pretty up to speed on RLS) and asked for help. We then went through various combinations of drugs( Pregabalin, clonazapine, codeine etc) and none of them worked. We finally decided on Oxycodone which did seem to work really well, most of the time but not entirely, so I added back in, a tiny dose of Pramipexole, just half a tablet, and that seemed to work quite well. The problem with this regime(which is what has brought me to my present situation) is that it is not totally effective over 24hrs, especially at night, and more importantly, it makes me feel light headed and off balance, so I am constantly afraid of falling over, find going downstairs or downhill difficult, and basically feel tired all the time. I used to be a pretty fit and active person, and I find that these drugs are tuning me into a semi invalid. It is just stopping me living my life, in a nutshell. So I referred myself to a consultant in London who specialises in sleep issues and RLS She is highly qualified in her field, and is totally aware of all the current thoughts on RLS , including Augmentation. She had originally thought she would put me on Pregabalin, but decided against it, for the moment, as my main complaint is tiredness and feeling off balance and lightheaded. So, she has decided to try me on Ropinerole, keeping to the smallest effective dose, and remaining mindful of the Augmentation issue. She said , if that starts to happen, then we would consider titrated doses of Pregabalin, or Gabapentin. So that's where I am at the moment, and I will just have to see how I go. At the moment switching from Pramipexole to Ropinerole is proving to be surprisingly difficult, as the lowest dose isn't working at night for me, unless I take twice the normal dose of Oxycodone, but you increase the dose of Ropinerole gradually so hopefully I will get to a comfortable level, and then I can start reducing the Oxycodone, which is the ultimate plan. So, that's my long answer to your question! I will let you know how I go. Like everyone else, I am totally sick of RLS ruining my life, so wish me luck! Thanks for your support! X😊

[Joolsg in reply to Sheelaghj]

Hi Shelagh

Thanks for explaining how you got to the position you are now in.

I still think you should not touch Ropinirole as you will definitely augment very quickly.

When you were at the stage of oxycodone working pretty well, I think that's when you should have added a low dose of pregabalin instead of going back on a small dose of pramipexole. It takes about 4 weeks to get the dopamine agonists completely out of your system and around the same time for pregabalin to be effective as you titrate the dose up slowly so it would have taken about 3/4 weeks for things to settle down and become effective.

Once off Dopamine Agonists, sadly not all people will get relief from RLS 24/7 in the same way. I think that's why people keep going back on them. A lucky, lucky few get the same sort of relief. I definitely do not get the same relief, but I know DAs are poison for me now- and not having that feeling of augmentation and irritability is wonderful. The RLS is much more muted as well so when it happens at night, I can deal with it much more easily with stretching exercises.

I completely understand your situation -as coming off even the smallest dose of a DA is absolute hell - for at least 4 or 5 weeks.

I know I am banging on here but I really, really think you should not touch another DA ever as you have had such a hellish time with them.

However, you are the only person who can decide on this matter- but I suspect you will be back asking for help again on this website if you go down the DA route.

I wish you well whatever you decide.

[hausbauer in reply to Joolsg]

Hi Joolsg

Reading your post I think maybe we are in the same boat. I came off Pramipexol end of October (Augmentation) and am now taking 125 mg Pregabalin in the evening. I feel very relieved not to have to suffer this horrid Augmentation (can have an afternoon nap and TV watching without walking around). Hope it stays like this.

The Pregabalin is not THE solution but the RLS seems - same as yours - more muted most nights. I wake up 1-3 times a night, massaging, walking around, watching TV but very very sleepy - but not too long , perhaps 20 minutes to max. 1 1/2 hours. Some nights are better, some worse. Why, only God knows. After retirement I can of course sleep till 9 or 10 a.m.

On most nights I get 5-6 hours sleep, sometimes 7.

I am hesitating to increase Pregabalin as my doctor suggested since I am feeling muted, constipated and sleepy with the 125 mg. My goal is to go as long as possible with this dose.

But altogether it is not too bad. Are your experiences similar ?

I know I could perhaps look up what you have written till now, but I do not seem to be able to do this. So a short answer will be much appreciated.

Thank you Christa

I

[Joolsg in reply to hausbauer]

Hi Christa,

Yes- exactly the same. I still wake up at least 3 times a night and do lots of stretching exercises which relieves the RLS enough to allow me back to sleep within 20-30 mins. It's much more muted than when I was on Ropinirole and suffering augmentation.

I am also on 25mg of Oxycontin and 150mg of pregabalin and like you manage around 6-7 hours of disrupted sleep. I am retired so often go back to bed at 8am and get the best sleep between 8-12 noon. My neurologist has said I need to simply accept this situation and adapt my life to morning sleeping.

Things have been easier once I did accept this , although this would be difficult if still working!

Like you, I do not want to increase the dose of either the Oxy or the pregabalin.

Take care,

Jools

[hausbauer in reply to Joolsg]

Thank you for your answer. I am so glad to have found this panel. It feels really good not to be alone with this. Wishing you all the best.

[Hedgie22 in reply to Sheelaghj]

Sheelaghj

Would you mind please giving me the name of the London consultant you went to about your RLS? I am keen to find a specialist who really knows about RLS! Many thanks

[Valrob47 in reply to Joolsg]

Hi was reading your reply and wanted to ask u why not to take pramipexol as i am on it at the moment. Before that i was on ripinerol. I should also add that i am on 20mg amitriptyline and 150mg of pregabal as i also have fibromyalgia and me do u u have any advive for me please x

[Joolsg in reply to Valrob47]

Yes- get off the Amitryptiline- great for nerve pain but makes RLS 1000% worse. If you need it as an anti depressant, switch to Wellbutrin or Trazodone- both are safe with RLS. If you need a nerve pain killer, the pregabalin is very helpful and will help RLS.

If you took ropinirole for your RLS and it simply stopped working, before you increased the dose, you CAN switch to Pramipexole. BUT - if the reason you switched was because your RLS was getting worse, starting earlier in the day and/or moving to arms, hands, back or face THEN you should not go on another Dopamine Agonist like Pramipexole because the same thing will happen. It's called Augmentation.

Hope this helps,

Jools

[Valrob47 in reply to Joolsg]

Ok thank you. What is the best meds for rls if i come off pramipexol and amitriptyline do u think x

[Joolsg in reply to Valrob47]

That depends. Is the pramipexole working for you at the moment? Are you suffering Augmentation?

If suffering augmentation, you would need to reduce the pramipexole very slowly with the help of an opioid like Tramadol.

Once off Pramipexole, and through withdrawal, there are several options. Pregabalin alone works well for a lot of people - up to 300mg taken in the evening. If Pregabalin alone doesn't help, a lot of people add in another med at a low dose- usually an opioid like tramadol or Oxycontin.

I take 25mg oxycontin- 10mg at 8am and 8pm and 5mg at 2am.

I also take 50mg Pregabalin at 11.30 pm and 100mg Pregabalin just before sleep.

It doesn't stop RLS 24/7 BUT it stops it completely in the daytime and works well enough to allow me around 7 hours disrupted sleep a night.

Many people get full relief on 100mg Tramadol or 300mg of Pregabalin.

Sadly, there is no "one size fits all" solution and there will be a lot of trial and error to find the right meds in the right doses at the right times that works for you.

What I would recommend is reducing any drug very slowly and also increasing dose of any new drug slowly and be patient to monitor the effect it has on you.

I really hope you manage to find the right combination of drugs that works for you as we are all very different and react differently to meds.

Take care,

Jools

[Valrob47 in reply to Joolsg]

Hi yes the pramipexole is working at the moment. Yeah totally understand. Ok thats brill thank you for your help x

[Joolsg in reply to Valrob47]

No problem. Once off Amitriptyline, RLS should improve.

Take care,

Jools

[LotteM]

Sheelagh, listen to jools. She is very knowledgeable about how to deal with augmentation on mirapex/pramipexole. While you are reducing the pramipexole (are you still? Or have you completed that already?) an increase in oxycontin may be needed temporarily to deal with the increased rls symptoms as a result of that reduction. Once the symptoms have settled, you may be able to reduce the oxycontin again. Oxycontin on its own works effectively for many people. And it is always advisable to try to find the lowest effective dose.

[LotteM]

Oh, and read again the elaborate post by involuntarydancer to your previous post. In particular, you may want to heed her advice on a combi of low doses of different meds.

And please answer jools’ question about why stopping the prami/oxy combi. I am interested in your answer as well!

[Madlegs1]

Listen carefully and heed closely-- your future happiness and health depends on this.

Believe me.😓

[nightdancer]

They are the same class of drugs, so that is interesting that your doc would want you to swap them. And, did you stop the Oxycodone altogether? That alone would make your RLS way worse. Mirapex is much stronger than Ropinerole, but are basically the same med, with different dosing. .88 is the highest one should EVER go for treating RLS. .25 of Requip would actually be a lesser dose in comparison, but WHY did your doctor want you to swap?