Waiting for a call from my Neurologist. I take
ROPINIRole different doses 3 times a day. My RLS is really bad at night. I don’t want to be a pest but I need some relief! I know I could have MS so much worse & I feel bad about complaining about this but I’m at loss what I can do without help. 😥😥
There seem to be so many people appearing on this forum recently that are having the same problems that you appear to be having. 3 people in the last 3 days, you make 4.
Probably for the same reason..
It would be possible to give you a more definite answer if you were to give more detail of what dose of ropinirole you're taking and how long you've been taking it.
Ropinirole, like pramipexole or rotigotine are all dopamine agonists, (DAs).
The long term consequences vary between these three drugs but are essentially the same. These include loss of efficacy, augmentation and Impulse Control Disorder.
Loss of efficacy : the drug stops working
Augmentation : the drug starts to make the symptoms worse. This is very common.
Impulse Control Disorder : the drug causesa gambling addiction, overeating, shopping addiction or hypersexuality. This is not so common.
What usually happens when ropinirole starts to lose effect, the doctor may increase the dose. This, however, does not solve the problem it may make it worse and actually cause augmentation. The bigher the dose you take, the greater the risk of augmentation.
Augmentation is indicated when symptoms spread from te legs to other parts of the body, become more intense, happen more quickly and happen earlier in the day.
The fact that you take ropinirole during the day suggests that you get symptoms during the day. If this is a feature that you didn't experience originally, this is a sign of augmentation.
Additionally, after taking a DA for some time, even if you can get to sleep, it can cause early waking insomnia.
I'm guessing then that it is very likely you have, or are beginning to have augmentationa and this is directly caused by ropinirole.
What to do. - You may find that your regular doctor has never heard of augmentation and hasn't a clue what to do about it. Lets hope not, but don't be surprised.
The most effective way of dealing with augmentation caused by a DA, in your case ropinirole, is to stop taking it. BUT, this is not a straight forward or easy thing to do.
I have copied below a response I gave to someone 3 days ago. The difference is they were taking pramipexole, you're taking ropinirole. They are both DAs.
You must NOT stop taking it suddenly, this is not only very risky but will cause horrendous withdrawal effects. It is better to reduce the DA in small steps and as slowly as possible.
BEFORE you start reducing the DA though is a good idea to start on an alternative RLS medication. The main accepted alternatives to DAs are called alpha 2 ligands, that is either gabapentin or pregabalin.
If you start on one of these at least 4 weeks before reducing the DA it will help reduce symptoms to some extent and will help minimise withdrawal effects, although even with slow withdrawal, you will still get these. I took gabapentin, started on 300mg and built it up to 900mg.
Withdrawal effects are usually a temporary worsening of symptoms. In some cases, not so common, withdrawal can cause some mental health issues.
The worst time is when you finally stop. Some people find an opiate helps at that time, if they can get one. Some people find taking a benzodiazepine or "Z" drug helps at that time, because you may be sleepless. Some people take a couple of weeks off work then.
I haven't taken a DA now for about 8 months. I now take 600mg gabapentin at night and sleep well and hardly ever have any RLS symptoms. My RLS has gone from very severe to mild.
You may have to convince your doctor of this however. Your doctor may know, but it's not common at all for GPs (PCPs) to know about augmentation and what to do about it. They like to increase the dose or switch to another DA, i.e. ropinirole or rotigotine. That's really not going to help long term.
They CAN prescribe gabapentin or pregabalin however, they are recognised as being effective for RLS, although they're not licensed for it, they are recommended.
They do not cause augmentation and aren't known to lose efficacy. They can also help sleep and relieve anxiety.
Here's a link to an overview of the treatment of RLS written by a professor of neurology and RLS specialist. Note the sections on augmentation and on the alpha 2 delta ligands
uptodate.com/contents/treat...
Read the "pinned" posts on this site about augmentation.
If you say you live in the UK, I can link you to UK relevant national RLS guidelines which clearly identify augmentation and clearly state alpha 2 ligands are recommended for RLS.
You may need to take this information to your doctor.
These are my suggestions based on my own experience. Many others on this forum have experienced the same problems with Ropinirole or the other DAs.
You don't have to continue with your worsening symptoms and insomnia. It's probably caused by the Ropinirole .
Take note of what raffs says.
DO NOT FEEL BAD ABOUT COMPLAINING.
We all need a moan now and again and I know this bloody condition causes terrible suffering. There are people on here with other 'serious' health problems that say their RLS causes them more suffering.
What dose of Ropinirole are you on and do you take any other drugs that may make things worse - antidepressants are a notorious class of drugs.
Are you anywhere you can access cannabis safely? If so you may find good benefit from it as many of us on here do.
Are you trying any stretching or hot baths/showers? Those along with dietary changes such as cutting out sugar/alcohol/gluten/dairy/caffeine.
Hope some of that helps and if you give us some more info we can help a little more. There are always good days ahead!!
Excellent replies from Manerva and Raffs. I looked for earlier post or replies from you and noticed that you take a large amount of ropinirole, something like 2x0.5mg three times a day, supplemented with at least one 2mg dose. The description and sound of your post has "augmentation" written all over it. Apart from the references Manerva gave you, the rls-uk.org site also has a page on augmentation. You've got some reading to do to prepare for the consultation with your neurologist.
One warming: even many neurologists are familiar with the phenomenon of augmentation, and even less with how to treat it. Also, not all of them are up to date with the potential alternative treatments; DAs used to be the standard once you get to the stage where medicines are needed. Etc. Thus make sure you know what is know and recommended by reliable resources. And, if you can, bring printouts of them. I just checked, but Manerva didn't include a link to te NICE guidelines. If you are in the UK, these are very useful. I can't give them, as I am in NL.
Go and read, and come back for questions, guidance, to tell is how the neurologist responded, or simply to moan and rant. We're here. We listen. And we understand.
This is a link to the UK national guidelines for the management of RLS.
cks.nice.org.uk/restless-le...
Note : this web page is only accessible in the UK.
It said only for U.K. 😧 You’d think that there would be something the same here.
So, where do you live?
I looked again, and quickly again, through some of your other replies and read that you have stage 3 kidney disease. That is one of the main diseases that can cause RLS. Have a look at the rls-uk.org website to see what they write about that. Or try the US rls.org site. It hold huge amounts of good info, but of you're not a member, large parts are inaccessible. Sorry I can't be of more help.
I’m a member of this so am a bit confused. My kidney specialist should know about my RLS, it’s in my chart (Assuming he read it!) and never said anything but next appointment I will definitely ask him. I heard from my Neurologist this afternoon and she upped my night time Med by one more to = 4 so I’ll see how that works. From my own research I read that RSL is quite common in people who have MS so one would think more research would be done on . But, since to many it seems to be such a minor inconvenience (Except for those who have it!) it’s not a priority.😒 And, personally have a problem with not being a “priority”!
If your night time med is ropinirole you SHOULD NOT just up it again, that is making the situation worse in the long run. Listen to what Manerva and Raffs have said - augmentation, not the RLS itself, is making your symptoms worse.
Thanks for your input but at this point in my life when this RLS is affecting my quality of Life than I’ll do anything to change it! I’ll be 69 yrs young one of these months and I am used to being active NOT so freakin tired 💤 that I’m afraid to drive my truck! I am closely monitored by both my PC and
my VA PC due to an illness in 2015. I take potassium for leg cramps and no further problems. I take gabapentin for arthritis in my neck which my Neurologist prescribed but my PC scaled back due my weight. I also take an antidepressant which my PC, in his “infinite wisdom” scaled back and within two weeks I went into a major spiral dive. I put myself back on the prescribed dose (originally from my [shrink]from the VA. & I formed her what happened.) Getting the jest of what I’m saying? I HAVE to be my own advocate & I don’t have the luxury of time on my side. I’m not a fatalist; just facing fact.
It seems you're already taking gabapentin, which you didn't mention before. I can see however, the weight gain is a problem. A shame since gabapentin could help relieve RLS too.
As for thr antidepressant, if this is either a SSRI or tricyclic antidepressant, it will probably be making your RLS worse. It's good then that you're scaling it back. If you are taking it for anxiety, or depression, it is more effective in the long term to seek psychological therapy rather than take medication which really, just covers it over.
The spiral dive might be withdrawal symptoms. If you really need an antidepressant I suggest Wellbutrin or Trazadone. These are known to be safer for RLS.
Good that you're taking potassium under supervision. You didn't say that either
It's good to be self advocating/self managing as much as you can, especially when the docs aren't completely informed.
However, no criticism intended, but you have to know what you're doing otherwise more harm than good will come if it.
The fact remains, the main factor in your RLS issue at the moment is the excessive amount of ropinirole you're taking.
If increasing the gabapentin isn't feasible then the other options you might consider are to switch to an extended release DA. There are, I believe extended release versions of pramipexole, requip and neupro patches. These sometimes help with augmentation.
A low dose opiate, is a further option if you can get a prescription.
If you continue with your current dose of ropinirole or increase it, things will probably just get worse.
😉 If I we’re to list everything I take I’d be here half the night! I take the gabapenten for the arthritis in my neck
(Which my PC reduced the disease that my Neurologist had prescribed for
me!). I also take ocyCODONE-acetaminophen for my DDD (Degenerative Disk Disease) which I use only when I absolutely need it (Although I do notice it does help my RLS) And, I also have PTSD and now MS and I didn’t ask for any of it! But, I am usually able to cope but this RLS, which keeps me from sleeping 💤 (Which is my little escape, more or less.) does not make me “a happy camper”. And, my Grandson, who I drive home tomorrow (He’s a high-functioning Autistic 20 yr old young man.) lost a filling tonight, my “other half” came home with a fever & cough this afternoon (Which he probably got from me.) & it’s raining ☔️ out! So, on that note I have my cat asleep 💤 on my lap (Her name is Pooky.); our dog
Red is snoring (really!!) so I guess I’ll sign off & read a bit & hopefully my legs will behave themselves! Nite!
Oh, 1 more thing. I’m not exactly overweight. I’m approximately 6’ & weighed today 104.4.!
Night
Sorry to hear of all your problems, perhaps RLS is not really an issue for you.
You did say that gabapentin was scaled back because of your weight. As weight gain is an issue with gabapentin I assumed you were overweight, sorry.
However, if you were, it now appears, if you're 104.4 pounds, that you are underweight. Apologies if I have that wrong, I'm presuming you live in the US. We don't measure weight in pounds here.
If you do want to help sleep better, then you might consider increasing the gabapentin, this will also help with your pain.
Also if you really want to deal more effectively with your RLS, again, increasing the gabapentin will mean you can reduce the ropinirole.
It's not a criticism, but you don't apoear to tecognise the need to do this, so I won't repeat it again. It's up to you.
I wonder about you saying oxycodone and acetomimophen. I've never heard of this. Acetominophen (paracetamol) is usually combined with codeine. You have added something to my knowledge.
I do have sympathy for all your problems but I' m afraid, on this site, you can only get support with your RLS.
My worst fear for you is I hope you are keeping up to date with Coronavirus Covid-19. You sound as if you would be very vulnerable to this. If your other half has cough and fever, this sounds like Covid-19. Anyone with these symptoms in the UK is being told to "self isolate" for at least 7 days, i.e. no contact at all with anyone else, stay home!
Whatever you're being told to do in the US about this, you need to do it. NOW
Increasing your ropinirole, as I previously said is going to make your RLS worse not better. The neurologist is ignorant to do this and I suggest, as before, you reduce it NOT increase it.
You are already taking a large dose, increasing it at night will put you well over the recommended maximum.
If you have kidney disease, I hope you are having your
potassium levels checked regularly. If you're having dialysis especially, a potassium supplement may significantly affect your RLS.
Do NOT take potassium without consulting a doctor, this would be very dangerous.
Just to repeat, for emphasis, if you want to improve your RLS, I strongly suggest you do NOT increase ropinirole.
Don't increase! If anything, try to decrease. That is the current approach.
How is your gp? She/he can be of great help, IF she/he is willing to get informed and work with you.
Re the membership: this forum is instigated by the UK and EU RLS foundations. You don't have to be a member of these of any foundations to participate in this forum. Just subscribe to HealthUnlocked. There is also an US RLS foundation. To get access to ALL their information, you have to become their member.
Sorry no, the UK guidelines only apply to the UK. I don't think there's any equivalent in any country where there's no national health service.
The article I gave you a link to was written by a Professor of Neurology/RLS specialist at the Mayo clinic, Minnesota.
The article is considerably more detailed than the guidelines, but doesn't have the same authority.
Have you tried Pramipexole? It’s the only prescription medication that’s worked for me and I’ve tried them all including Ropinerole.
No, I haven’t but I will definitely mention it to my Neurologist. I appreciate your input!
Thankee
I saw a top sleep specialist for 4 years and he also referred me to a neurologist, in the end I discharged myself from them both as I felt like we’d reached the end of the line! Pramipexole is the only medication that’s helped me, but I do have spells when it doesn’t seem to work? Ropinerole did nothing for me. I know both of these drugs work for some but not others and recently I’ve been trying Tissue Salts for Insomnia which appear to be helping, but it’s early days yet!
Tissue Salts? My worse time for RLS is at night; I usually get to.bed between 2-4am & and start waking up around 6:00am. I always make any appointments I have in the afternoon because mornings are a bitch for me. (Lack of sleep 😴
Tissue Salts for Insomnia, they are tablets that you chew, they are quite cheap and easy to buy at most Chemists or Health Food shops okay
Sounds like you are augmenting on the drug. It means that the drug went from helping you to making your symptoms worse. I’ve been through it and had to wean off the ropinirole. Once off my RLS returned to only being at night and not as severe. I now manage it on my own with CBD and small dose of THC.
Fighting Exhaustion with RL
Newbie exhausted 
Exhausted and fed up
How do I manage this strange sensation at night and not feel completely exhausted during the day?
Anyone tried acupuncture? I'm looking into it. so exhausted I will give it a go.
