Thanks to everyone who replied to my post about changing from Ropinirole to Rotigotine patches. There was some very useful information and experiences from everyone and good advice. I am considering weaning myself of Ropinirole as it looks like the general view is you should not just switch from one dopamine medication to another if you are augmenting.
My doctor suggested I should wean myself of Ropinirole over a week and then start the patches, but as I have now learned from everyone, I’m not sure this is the best advice. When I broached the issue of coming off Ropinirole with my doctor before and asked if she would prescribe something like Tramadole to help the withdrawal symptoms , she wasn’t very cooperative as she said it is a controlled drug. Also a lot of you suggest taking Pregabalin to help through withdrawal and afterwards. I have been taking Pregabalin as a nerve pain medication for awhile, but after a blood test it was discovered that Pregabalin had caused Neutropenia, (very low white blood cell count) and leaves you at the risk of infections. So I can only take it very occasionally and have to have regular blood tests. So coming of Ropinirole does not leave me with many options after withdrawal to manage my RLS. So don’t really know where to go from here. So any further advice should be very welcoming.
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murph50
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I spoke to the doctor about getting a different medication for nerve pain and she said the alternatives we’re Gabapentin or Amitriptyline. She looked into Gabapentin and said it was very likely have the same effect as Pregabalin and reduce my white blood cell count and I could be at risk of not being able to fight infections. So that was also ruled out. I said Amitriptyline was a trigger for RLS, so I couldn’t take that. So do not know what other sort I of medication would help after withdrawal.
First, amitriptyline is one of the meds that can make RLS worse.
Secondly, I’ve been taking Gabapentin for nerve pain and RLS for 4 years and I’ve never had a low blood count. And, I’ve never seen or heard of it causing that. Gabapentin is one of the first line meds that are prescribed for RLS and in my opinion, if they caused low blood counts, it wouldn’t be so readily prescribed for RLS.
Hi I appreciate what you say about your doctor being uncooperative.
My GP also flatly refused to prescribe an opiate for RLS withdrawal. She said, "No GP will be willing to prescribe opiates for RLS".
You could ask to see another doctor, presumably there's more than 1 at your surgery. You may get the same answer.
The GP I asked suggested that I see a neurologist and whatever the neurologist advised, she was willing to prescribe. However, to see an NHS neurologist would be a waiting time of at least 6 months. She suggested I see one privately. However, in that case you have to find one yourself.
It proved difficult to find one. The few I found were a long distance away and of those that mentioned what they specialised in, none mentioned RLS. I wasn't willing to risk going a long distance to pay someone goodness knows how much when I had no guarantee that they had any expertise in RLS.
Luckily I have managed to reduce my Pramipexole to one twelfth of what it was and I am sleeping now.
There may be totally irrational reasons for GPs not prescribing one thing or another. I understand that it's a tough, stressful (high suicide rate) and increasingly less popular job.
The reasons they give for refusing are defensive and aren't convincing really. The GP i saw refused an opiate for RLS, another GP at the same surgery was quite happy to prescribe one for nerve pain without me even asking. Does this mean people who have RLS are more likely to abuse the drug?
Presumably, it is either the same doctor or same surgery that gave you a prescription for Pregabalin. They refused an opiate because it is a controlled drug? Pregabalin is a controlled drug.
I understand it makes you want to spit!
I'm sorry this doesn't really help you, but you can know I understand and sympathise.
This attitude and ignorance toward RLS is appalling, I'm sure the failure to get good responses from the NHS can drive some sufferers to illegal drug use, dangerous practices and suicide.
Some members on this forum have mentioned taking some kind of (political) action on this issue, but I'm not spending any sleepless nights pondering on that.
One slight hope, you could try pointing out to your doctor what the NICE guidelines on RLS say about drug treatment i.e.
"A weak opioid (such as codeine), taken intermittently or regularly, (depending on symptoms), is an alternative."
That is alternative to DAs or A2D ligands. Depending means - say you have pain!
Although experts (e.g. Dr B ) say it has to be a "potent" opiate. Codeine isn't really, but may be better to have this than nothing.
A further persuasion might be that "Targinact" a combination of Oxycodone and Naloxone was licensed for RLS in 2015 in the UK, but it may be that only a neurology or sleep specialist can prescribe.
Catch (b****y) 22
Additionally, Oxycodone for chronic pain has been recently blacklisted, so I don't know if it has been for RLS.
I believe some members here have mentioned taking Oxycodone (in the UK) , but I don't know how they managed to get it.
Generally, GPs are not allowed prescribe opiates unless ok'ed by consultant.
Codeine should be ok, and has served some people well.
The NICE guidelines are well worth following up, since they should be the doctors Bible.
Good luck.
Hi murph50!
I hate to sound so negative, but it sounds to me as though you are running out of treatment options (doctor won’t prescribe Tramadol, you can only take Pregabalin occasionally, you are being advised that all DAs are out of the question). I’m so very sorry for this! I know the desperation it causes to see yourself slowly running out of treatment options and it’s not a good place to be. I do want to help offer some hope. My experience seems to defy what researchers (and those on here) say about DAs. I’ve been on 3 separate ones back-to-back without re-augmenting to the point of needing to switch (I severely augmented on Pramipexole in 2015).
Unfortunately, you never know how a drug 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? RLS sufferers have limited medical options to start with, so to leave out all other DAs just because of what research tells us about them is to deny yourself access to potential avenues for help.
Yes, you are right, it is unique. But why? Why does it work for me and not others? Yes, we are all unique in what works but, unless I am a one-of-a-kind in how I can deal with this, I don't see what's wrong with my experience. It's real, it's human, it's from someone who needs a high dose of medicine to keep her RLS liveable; where is the anomaly? Are you saying that what I experience has no merit???
I appreciate your response and thank you for not denying my experience! Just a gentle challenge, meant to be kind: The hard thing is we don't know how much it relates to others. How can we? Are we psychic? How do we know that for example, another DA won't help someone until they try it? I wish to God that we had the ability to be psychic when it comes to medication and how they affect us, but since we don't, what's left then to try? What's to lose?
If I could take the whole lot of you and duplicate my experience with a 100% success rate I would, but I can't. Since I can't do that I am settling for the next best thing, and that is to share my experience in the hopes that I can help at least one person who might otherwise be at the end of their rope.
I will continue to share my experience because that is what we are all about, right? Sharing our experiences? I just got to the point where I have the courage to share it (there is something seriously wrong if you have to build up the courage to share your own experience in a support group). I can't help it that my experience defies research or doesn't mesh with what the majority of what those with RLS experience. What do you want me to do? Tell God that he made a mistake in blessing me with being able to have an experience that is @outside the norm@ (sorry, new device and haven't yet figured out how to do quotation marks)? That he should take that back?
Please don't deny me the ability to share something that is out of my control.
The questions are being answered with knowledge and FACTS. Like I have said, the general rule is you do not follow one dopamine med with another. IF YOU are the exception, then so be it. BUT 99% of RLSer's WILL have the repeated augmentation experience.
That is not a fact, nightdancer. I am sorry to interfere and speak against the general believe on this forum. But I feel it is important to speak up for the science- and clinical experience- based recommendations from the RLS experts. If you read the guidelines from the IRLSSG from 2016 (link below) one of the first approaches to deal with augmentation is to switch from a short-acting DA (ropinirole/Requip or pramipexole/Mirapex) to a long acting one (rotigotine/Neupro). Yes, there is concern that you may augment again and/or that the rotigotine may mask one of the telltale signs of augmentation, earlier onset of symptoms. The IRLSSG acknowledges that, and still keeps to switch to the long-acting DA as one of the first options. I can only assume that is because that approach is effective for the majority of people. Unfortunately, we here on this forum are most likely part of the minority with severe symptoms and often past or current (severe) augmentation.
Finally, a reasonable soul to stop this attack! Thanks Lotte! I just hope you won’t be attacked as well! It’s quite hilarious how the same two people speak up whenever I have something to say.
thank you for your reply, Lotte. The general info is now with all the emphasis on augmentation theses days is to not do that. But, like I said, there are exceptions to everything. I use that web site all the time. Info changes all the time. Good to see both sides. But, they do stress the augmentation issues pretty thoroughly here in this article, and stress low doses to avoid augmentation. I see Dr. B's name on there, and I know he has totally changed his way of thinking, and they do emphasize augmentation there. Good article, though. The headline says dopamine drugs are first line treatment and that is true. But, then they go into what happens when the dose gets too high, etc. So, it is a good reference for augmentation.
Hi Murph, hope this isn't too late, but I've been on Ropinirole for several years and have used a regime that has so far avoided augmentation. I can't be sure it's ALL down to the pattern I use, but I'll share: I use Ropinirole in chunks of several weeks on, several weeks off. Toward the end of each "on" period, I up the dose for a few days, then stop. I don't get cold turkey. In fact I find the benefit I got from the Ropinirole usually continues for maybe a week or more, then my RLS returns, but at a low, manageable level. It stays like that (with occasional bad days) for a few weeks before I feel it starting to get consistently bad again (ie several nights in a row of bad RLS) - and that's my signal to resume dosage, and it always works when I go back. It's not perfect as you will still have to put up with occasional bad nights, but I always know the Ropinirole is there to release me. Maybe if you come off Ropinirole for a couple of months, you could go back on and see if this regime works. Actually, I'll post this as a subject in it's own right.
"Posts should be of interest to the wider RLS forum rather than just individuals. Posts should never be used to 'have a go' at someone else. I have noticed a few people trying to circumnavigate the 'no names' rule by putting up statements which clearly are directed at particular individuals but which are often poorly disguised as something else. Please, let's stop this.
Please support each other and if someone expresses views you disagree with, please think carefully before you respond. We all have different views - we should all be allowed a voice, to express an opinion in a safe place where we won't be ridiculed. Goodness knows most of us have been ridiculed for years for having this condition so we should do our best to ensure this stops when it comes to the forum. However, we should also be ready to be challenged for what we write without feeling we are being attacked just because someone else has a different view. We are all here because we need the advice and support of other fellow sufferers."
I hope that everyone takes this to heart, Kaarina!!
I just hope that others who have been made to feel alienated are dealing better with this than I am! I’m hoping to have the courage to come back here someday soon, but for now I’ve been hurt. Who knew that a support group could foster feelings of alienation in others! It’s pretty ridiculous!!! I’m sure I’m not the only one who has nothing but kindness in their heart, but to be de-valued for it like I have been on more than one occasion is utterly ridiculous and downright shameful!!
As well as my wish for everyone (inluding me) to read and take this to heart, it is my wish that especially those implicated really study this!!
I am not sure who has made you feel alienated. I have only seen people giving advise to the poster on NOT swapping the Ropinerole to Rotigoline Or their experience of coming of a DA after Augmentation.
this is for everyone. There is a reason the rules have been posted on this thread specifically. As far as dopamine meds, the GENERAL rule is once you have augmented on a dopamine med, you will on another one and faster. Doctors at Johns Hopkins RLS Quality Care Center in Baltimore really do have the bottom line on this subject, and both the RLS US Foundation and the UK RLS Foundation agree along with any RLS expert/.doctor worth his or her salt. It is a fact. We know there are always exceptions to rules, but if you are feeling RLS in your arms now with your 4 mg patch, that will be augmentation happening, Sails.
Murph50 My personal experience -I augmented severely from Pramipexole (Mirapex ) years ago, that is when I found this forum,my RLS became 24 / 7 and had spread to my arms, I was in a mess. My GP just kept increasing the dose. From here I first heard of augmentation. I began to very slowly decrease the Pramipexole, I eventually needed strong slow release Morphine to get me off it completely. Without the opiates I would have lost my mind I fear.
After 6 months I am sure I would have reached "base line " and over the withdrawals but unfortunately every single night was still hellalthough my day time symptoms had settled down. The high doses of Morphine were causing me dreadful gastric problems and after 9 months I was living on milky drinks, complan meal replacements and juices. I lost alot of weight and severely constipated to the point of impaction. I couldn't remain on the high doses of opiates my RLS needed.
After 12 months the GP wanted me in hospital as I just couldn't eat
I tried Gabapentin, Pregablin and Clonazepam but not help whatsoever
I decided to risk the Neupro patch as I didn't have anywhere else to turn. I pleaded with my GP as the cost of it meant he didn't really want to prescribe it but I was in floods of tears so he decided we could give it a shot
I have had around 6 very good years from it. I did think it wasn't working so well earlier this year but seems it was only a blip
Now what I feel is important to add in my particular case is the following
1/ I had taken 13 months break from all DA's before starting Neupro patch
2/ I stick firmly to the lowest dose of 1mg and in fact I cut a tiny strip off that so actually not even a full 1mg
3/I take breaks from it. I aim for 2 weeks break but my withdrawals are so bad I usually only manage around 10 days break so I take the breaks more regularly
4/I saw a Neurologist simply to get him to get my GP to agree to me being prescribed Zopiclone (sleeping pill ) and Clonazepam to help me through those breaks
5/Should I suspect augmentation as I did earlier this year I would immediately start to reduce the dose as I did which is why I am only on 3 quarters of a patch now
6/I would never go over the lowest dose of 1mg patch
7/I still take Morphine but a really teeny, tiny dose (which I need anyway for back pain ) and I take breaks from that too
Thanks. That is why drug holidays are such a good idea, to ward off the augmentation. I know you know when it is starting, and know when the holiday has to begin. xx
Please read Pippins reply above this one. Will explain a lot of things. She has to take a "drug holiday" or a break every few months, so as not to augment. It is a right pain for her, but she manages with other meds during her breaks on the dopamine meds. it is sooo hard when you have a LOT of people telling you so many things.
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