I am a long term rls sufferer and I need help dealing with my condition. I was on gabapentin for about 9 years but the condition just steadily got worse. After a neurological consult, I was given ropinirol & clonazapan. Results were variable at best. Due to side effects, I stopped taking clonazapan. I now find the condition is reaching an almost intolerable level. If I increase my ropinirol dosage from 2 to 3mg’s, nausea keeps me awake. I try to take my medication about 1.5 hours prior to bed time but with very variable results and I constantly wake up early due to rls (usually in my arms)
What else should I be trying?
Is Horizant available in the uk?
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Earlyriser13
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Look out for augmentation. Having symtomps in the arms is a classic sign of augmentation. At this point, if you can a find a supportive doctor, you need to reduce Ropinerole very slowly and if possible, permanently stop it. That is very very difficult so you absolutely need support from your doctor.
Also, have a look at your ferretin. Ideally, it should be >100 for people with RLS.
So by augmentation, does this mean the condition is getting worse due to the medication? I am interested in the ferritin side and have been on iron in the past but this was stopped by my doctor as apparently the correct levels had been achieved. Since this time I have had a number of blood tests due to a low white cell count which suddenly seemed to correct itself. I always asked what the ferritin level was but this was not being checked and needed a doctor to request it ( difficult to get appointment here)
I have been talking an iron supplement for the last few days but no changes noted.
Ropinirole will eventually cause augmentation in the majority of patients.
If it’s moved to your arms that’s a classic sign of Augmentation. Read the pinned post (top right).
Alternatives to Ropinirole are Gabapentin or pregabalin ( but you say Gabapentin stopped working) or opioids like tramadol or OxyContin.
Horizant is not available in the UK.
Check you’re not taking meds that cause or worsen RLS like anti depressants and anti histamines and get a full panel blood test to ensure serum ferritin is above 100, preferably 300 as raising ferritin relieves RLS for 50% of sufferers.
I'm sorry you find yourself in this situation.
I guess, as you mention Horizant that you live in the US. If so, depending where you live you could consult one of the well reputed RLS experts there.
You could email one, Dr Buchfuhrer. If you tell him in detail your position, he will reply. You can email by following the link below and using the yellow email button.
I imagine he will advise you to try an opiate as both the "first line" medications have failed.
As others have said, it appears the ropinirole is making things worse so you should consider stopping it. Note that you must not suddenly stop taking it. I suggest you reduce it in steps of 0.5mg every 4 weeks. This may cause withdrawal effects at first, a worsening of symptoms and sleeplessness. These should settle. If they are too severe then reduce in steps of 0.25mg. The more slowly you reduce the ropinirole the less the wuthdrawal effects will be.
However, as your RLS appears "refractory" it would be best if you want to try an opiate and can get a prescription, that you start that first before reducing the ropinirole.
As Jools suggests you may be suffering iron deficiency. Commonly if a doctor says your iron levels OK, they mean you don't have an anaemia. However the problem with RLS is that it's highly likely you have Brain Iron Deficency. (BID) not anaemia. This is indicated by your ferritin level. If you've had this tested recently find out the result, the number. "OK" or "Normal" is meaningless for somebody with RLS. If no recent test, ask for one.
Normal is 15 ng/mL or more. For somebody with RLS to have the same brain iron level as somebody who doesn't have RLS, ferritin needs to be 200ng/m L.
If your ferritin is below 75ng/mL then you can start taking an oral iron supplement. Gentle iron taken once every two days, double dose, taken on an empty stomach with a glass of orange will help increase your ferritin. NOT every day, this is important.
If you can get your ferritin to 100ng/mL 50% of people with RLS benefit from.this. If you don't then you may benefit from getting it higher, but to do that you would need an iron infusion. This can have a success rate of 60%.
As Jools also says, there may be things making your RLS worse. This could be any number of medications. It could also be your diet.
Added sugar is a RLS trigger as is any carbohydrate with a high glycaemic index.
If you have gluten or lactose intolerance, SIBO or IBS then this can be a factor in your RLS. An "anti-inflammatory" diet may help. Anything which causes chronic subclinical (you're not aware of it) inflammation can interfere with iron metabolism.
A low oxalate diet may help. Tsking antioxidants may help e.g. celery juice.
It seems that the ropinirole is causing you problems at the moment, but more than that, your RLS is severe and there's something else going on, low iron and/or some trigger(s).
Thanks so much for your information. I live in Scotland so access to some treatment is not possible. I do think however that augmentation is an issue for me as it certainly seems to be getting worse. I am going to write to my neurologist in the first instance then take it from there.
Thanks for the reply, such a difficult condition to deal with. I don’t have any swelling it’s simply the uncontrollable urge to move that stops me getting to sleep and then waking early.
I agree with the comments others are saying. I am decreasing my dopamine agonist medication (sifrol) with the aim to get off it completely. This is due to augmentation.
While I am doing this I am taking Endone 5mg or if I can manage it 2.5mg
Unfortunately there are no easy answers.
I don't drink alcohol, and I don't smoke.
Too much sugar is not good and even preservatives and additives in food can set my legs off.
I did cut out caffeine but that had no effect. Infact coffee actually is helpful and I find it has a relaxing effect.
Massage is helpful and leg and lower back stretches and a relaxing shower or bath.
Sorry you are going through so much discomfort I know how painful , lonley and long the nights are.
Apologies, I missed that you asked if Horizant is available in the UK. It isn't.
If you were coinidering switching back to gabapentin in the UK, it might be better to switch to pregabalin as this is more potent than the gabapentin we get here.
Unfortunately is would be more difficult to see a US RLS expert if you live here in the UK. However, you can still write to Dr Buchfuhrer.
The position regarding RLS experts, getting an IV iron infusion or an opiate is also more difficult, I believe in theUK, than in the US.
Thanks for the reply. I live in Scotland so no horizant available. I’m at the stage now where I will try anything really. I intend writing to my urologist in the first instance. I do however think that augmentation is certainly a factor.
Chronic subclinical inflammation does not mean there's any swelling anywhere!
"Subclinical" means that you may not notice it at all, no symptoms, especially if its bowel inflammation. In this case it can only be detected by markers in the blood e.g. cytokines.
There is some evidence that the level of cytokines in the blood corresponds to the severity of RLS symptoms.
If you have any chronic inflammation you probably won't know, it can also promote cancetr, diabetes and cardiovascular disease including dementia.
Gabapentin enacarbil (horizant) is not available in any part of the UK only gabapentin and pregabalin.
You may or may not be suffering augmentation due to the ropinirole, although even if you aren't it doesn' t seem to be working. In either case it will be better to stop taking it, as I described. It's not a good idea to increase it or switch to any other dopamine agonist, either pramipexole or rotigotine.
It's worth trying writing to a neurologist, but I doubt if they will reply although I suppose I could be wrong especially if it's a private neurologist. . Also, it might be a little unrealistic that any neurologist who's prescribed a dopamine agonist is going to be particularly helpful with RLS. If you read many other posts in this forum, you'll see this.
It is worth trying to consult a neurologist somehow however, as they may be able to prescrtibe an opiate or arrange an IV iron infusion if they have any awareness of these.
It's still an option to contact Dr Buchfuhrer, which I suggest you do.
Hi Manerva, I’ve heard before that Dr Buchfuhrer will reply to UK patients, do you know if he charges for his help, and also do our UK GP’s ever take any notice of the replies and help he gives. I suspect most of them have never heard of him. I might also give him a try if it will help me.
Like me sounds as if you had successful treatment abroad, like me you cannot get the drugs that worked here in the U.K. I have thought about getting the drugs imported but am reticent as they might not be what they say they are. So I am sorry to tell you that it is trial and error, sleepless nights to get some relief.
I still struggle every night but try to look on the positive side.
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