Switch from Ropinirole to Rotigotine ... - Restless Legs Syn...

Restless Legs Syndrome

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Switch from Ropinirole to Rotigotine patches

murph50
murph50

I am considering switching my RLS medication from Ropinirole to Rotigotine patches as I have been experiencing augmentation. My doctor says I should wean myself of Ropinirole before starting Rotigotine and shouldn’t do a straight switch. Has anyone else experience this and got any advice.

21 Replies
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Hi murph, unfortunately once you augment on a dopamine med like you have from the Ropinerole. then switching to another dopamine med like the patches will result in you still having augmentation. You will still be taking dopamine, so will be no different to taking the Ropinerole. IF you had not augmented and you just wanted to try a different type of dopamine med then switching straight over from one to another would be fine, would be no need to wean off one to use another.

murph50
murph50 in reply to Elisse2

Thanks for that, it has given me something to think about.

I left a period of a year or so between DA's - your GP is right - take a slow wean down replacing with the likes of Lyrica or Targinact or whatever your Dr will prescribe then hopefully use that particular drug until its efficacy goes then start the patches - but be warned the side-effects are insidious so make sure someone keeps an eye on you, these are potent and harmful drugs!!

murph50
murph50 in reply to raffs

Thank you, that is very useful information.

You will also need something to help you withdraw from the ropinirole. It is extremely difficult (speaking from one who knows!). You will need something from your doctor eg Tramadol. Whatever you then decide to try it will not work until 2-3 weeks after the last dose of ropinirole.

Search for augmentation on here or read the link below and if you think this is what you are experiencing then DO NOT replace ropinirole with another dopamine drug.

rls-uk.org/augmentation-reb...

sleepreviewmag.com/2015/02/...

murph50
murph50 in reply to Pam34

I am wondering if going from one dopamine drug to another is a good idea. Thanks for the information.

Manerva
Manerva in reply to murph50

The responses you've received are a apparently a bit contradictory. Ellise says you can switch from one DA to another without weaning off, Jools appears to be suggesting you can't

However, what Jools is actually saying is that to avoid augmentation you need to switch to Pregabalin for a year, and then, if necessary switch back to another DA. In which case you DO need to wean off the DA.

So no contradiction really.

It does seem better in the long term to wean off a DA and try Pregabalin rather than just change DAs, which might be a frying pan and fire scenario.

In the shorter term only it might seem easier to simply switch from one DA to another as my GP has suggested a couple of times saying "there are alternatives". If you do this DO ask your Dr why he/she is saying you have to wean off one before starting the other.

As Pam says, if you do go for the weaning off option, you will need something to help through withdrawal. My GP surgery flatly refuse to prescribe an opiate for that. Suggested I'd have to wait 6 or more months to see an NHS neurologist or find one privately. So it's not an easy option.

Elisse2
Elisse2 in reply to Manerva

Manerva my understanding has always been if you change from one dopamine med to another IF you have NOT augmented then a straight switch can be done, without weaning off first. As in, the first dopamine med is making you feel, ill , as some find one of those dopamine meds can cause nausea, they find if they switch straight on to another DA that one works slightly different and they find causes no nausea. thats one example of a side effect which swapping can rectify. ONLY if augmented has happened then you dont swap DA's you then DO wean off the offending DA. If am wrong then i need to know .

Manerva
Manerva in reply to Elisse2

Hi Elisse, I don't doubt that you're right. It was just that - it appeared - that you were saying you could and Raffs was saying you couldn't

I was just trying to clarify it and Raffs wasn;t actually contradicting you at all.

Augmentation is another factor of course, but by loigic alone, it would seem that if two drugs do the same thing, then there/s no need to wean off one to start the oither.

Perhaps we both need to find out the asnwer for absolute sure.

Elisse2
Elisse2 in reply to Manerva

Yes i think we ALL need to know that answer for future posts. :) Where does Jools say the opposite, as cant see her comment on this thread.

Manerva
Manerva in reply to Elisse2

OMG, having a bad brain day, first I get Ropinirole mixed up with Rotigotine, then I get Raffs mixed up with Jools.

Sorry Elisse

Sorry Jools

Sorry Raffs.

Sorry Sails

Sorry me!

Elisse2
Elisse2 in reply to Manerva

Hey dont worry, i have that bad brain day every day,. which is why i need confirmation on the swapping dopamine meds when NOT having augmentation. :D

Hidden
Hidden

Hello! My response will be very different from others, but I am not afraid to include it because it is a real experience from a real RLS sufferer (who must have pretty severe RLS since she needs 4mg Neupro).

(Sorry; that introduction was more for some others who don’t think I have very much RLS at all all because my experience differs from theirs than it was for you).

My experience:

I went from Pramipexole to Neurontin to Neupro one right after the other. Pramipexole worked well for 4 years. I augmented on it (which was Hell on Earth) and withdrew from it without the help of anything else (I honestly don’t remember the withdrawal being that bad).I was switched to Neurontin, but told the neurologist to switch me to something else after 3-4 weeks gave no results. I was started on 1mg Neupro and worked my way up where I’d be comfortable at 4mg. Sure, I have still have issues now and then with RLS (who on here doesn’t?,) but overall my RLS is 85-90% better than it was during my Augmentation. I couldn’t ask for much more! Sure the Neupro might crap out on me at some point, but I will enjoy it working while it does!

This syndrome (as in all syndromes I would think) is very individual. It is all about trial and error in finding what works for you. I hope this you find what works for you soon!

Take care!

Some more information from John Hopkins and Dr Early. he mentions NOT to change to another Dopamine med once you have augmented on one hopkinsmedicine.org/neurolo...

Manerva
Manerva in reply to Elisse2

Great, that clarifies, that. That's both logical and confimed. Presumably that's if you've ever augmented.

Now just need to see about changing if you never have.

I was on lmg Neupro then increased to 2mg and after a short time l suffered augmentation ( hell on earth ). I only realised this after reading about it on this forum ( my salvation ). My doctors, though very kind, didn't know much about RLS, so l weaned myself off the patch, it took me about 6 months, l was already on gabapentin 1200 throughout the day, my doctor gave me 30mgs codeine to be taken at night. These wonderful people on here surgested l had my ferritin levels checked, l was told by the group it should be over 100/200,mine was 20. My surgery refused an iron infusion and put me on 210mgs iron tablets 1twice daily, that was about 6 months ago, my ferritin is slowly increasing, its now 87 and with the iron tabs gabapentin and codeine my RLS is well under control. I am a different woman, not cured l know, but life is bearable

I thank the Lord above that l found this group

I hope this all makes sense, l know we are all different but l would never go on any form of DA' s again.

You never said if you've had your ferritin levels checked

Once again l hope this all makes sense, lm not very good at explaining

I was on the patch for 10yr at 5mg and 3mg ropinorole rls was controled at 100% then tried getting of the patch and switched to 4mg ropinorole Er fbsn down to 2mg then only 3mg Ropinorole lyrica and gadapentin 1200mg but couldn’t kick the Ropinorole got down to 2mg struggled with rls and no sleep gave up and know I’m at 2mg neupro patch and 3mg rls and I’m back to no rls

All the comments seem to agree, if you've ever augmented, then you shouldn't switch from Ropinirole to Rotigotine. Sorry if I've caused any confusion.

Hidden
Hidden in reply to Manerva

Hey Manerva! Don’t take this the wrong way (it’s meant to be taken in a nice way), but what about my experience of not augmenting (fully) going from one DA to the other? I would hope that it would count.

I know the desperation it causes to see yourself slowly running out of options. It sounds as if murph50 is unfortunately getting to the point where treatment options are running low (especially made apparent in his other post). I don’t need to tell you (or anyone else on this forum) what an awful feeling that is. This is a torturous disease, so to imply to someone that all other DAs are cut off just because they had a bad experience with only one of those is denying them several options (one of which might work). Unfortunately, you never know how it will affect you until you try it. Of course, if you couldn’t go on another DA due to previous medical reasons (pacemaker, other diseases, etc.) , where such issues wouldn’t mesh well (as in make things worse) that would be one thing. But if not, why not try it?

Manerva
Manerva in reply to Hidden

Thanks Sails you have very diplomatically put this all into some perspective and I don't disagree with you at all. You are quite at liberty to challenge anything and everything I say as I have learned to value your opinion. I hope Murph has also read your post.

Anyone in this community is perfectly at liberty to accept the comments that are made or reject them according to their personal knowledge, experiences and preferences. Whether Murph switches from one DA to another is Murph's choice.

I did feel I made a mess of things for Murph, possibly causing confusion with the "Can you switch from one DA to another without weaning"? debate. I hope that got cleared up.

I think my "summary", was an accurate summary of the comments being made, but it might have been unnecessary and given the impression that it was a "conclusion" or that I supported it.

We are in the same position as most health promoters, you can only give people the facts and let them make their own decisions.

It might seem totally irrelevant, but, sadly, I've recently read a book on Quantum physics which led to a great debate on the question of whether there is an ultimate "reality" independent of an observer. That question has not been answered as yet. Einstein insisted there was, but couldn't prove it. "String theory" might provide an answer, but that's another book. However, most physicists, I believe, just assume there is no ultimate reality and in practice there are only probabilities and statistics with no absolutes.

(I find the idea that things don't exist unless your observing them wierd! It adds a whole new meaning to the bhuddist koan, what does a fallingb tree sound like, if there's nobody there to hear it?)

If one DA causes augmentation then switching to another will also cause augmentation is not an absolute truth, it does appear probable however.

This is one of the factors Murph will have to weigh up.

Finally, a good test of judging whether it's right to advise somebody to do something is to ask if you would be willing to do it yourself.

Hidden
Hidden in reply to Manerva

Thank you! I wasn’t challenging you as much as I was challenging everybody. Unfortunately not everyone is as open to my experience as you are, which is a real shame. What I experience is very real too and is worth considering just as much as the next person’s suggestion. We are all here to help provide hope for others battling this beast of a syndrome. I will copy my reply and reply directly to murph50.

Some members in particular have been making my time on here not so easy all because I don’t “fit” the research/their experience and I am still “recovering”. I will not mention names (even to you), but I need to rant. If you don’t mind, can I message you later? You are a great friend!😀

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