What is the best medication for RLS in Uk. I am currently on Pramipexole after trying Ropinirole and Gabapentin I also take 5mg of Zolpidem to help me sleep as taking Amiodarone and Bispoprol for A/F My GP says I should stop taking the Zolpidem as could interact with Promipexole don’t wish to do this as a 79 year old I find Zolpidem works best of all to help me get back to sleep at 2am if I wake With very little side effects as it has a short half life
Any advice would be Appreciated
Thanks Mike
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Mike-tyson
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I will resist the many puns which immediately come to mind.
I don't think anybody could claim that there's any ideal medicatiion for RLS, anywhere really. not just the UK.
All the medications currently available that may be effective for RLS have some drawback. Some worse than others, but none are problem free.
The things which cause problems are -
* side effects
* complications
* limited effectiveness
* willingness of doctors to give a prescription.
All in all it's a bit of a juggling act to find what's best for you, but also when.
Pramipexole is one of the most effective meds for RLS initially, but is the worst overall for complications.
Of all the different kinds of med tried for RLS, dopamine agonists (DAs) are overall the worst for complications. Of the three used for RLS i.e. pramipexole is the most likely to cause complications, ropinirole is less likely and rotigotine is the least likely. They do however all cause the same complications.
I'm afraid to say, changing from ropinirole to pramipexole is probably the worst thing anybody could possibly do.
You write you "tried" ropinirole and don't say why it was changed. The reason for changing is significant. I can think of several possible reasons.
1) If you took ropinirole for some time, months to years and it worked at first, but then stopped working, this is a common complication of DAs, i.e. loss of efficacy.
In this case, pramipexole may also work at first, but will fail quickly, because you've already taken a DA before.
2) If you took ropinirole for some time and it worked at first, then failed and the dose was increased and after the increase your RLS actually got worse. This is also a common complication of DAs, this is called "augmentation".
In this case, pramipexole may also work at first, but may not and/or augmentation will get even worse. This is because you've already augmented on a DA before.
3) If you only took ropinirole for a short while e.g. weeks and it didn't work and/or didn't work after increasing the dose. Then it's possible you don't have RLS at all.
In which case pramipexole won't work either.
You write you "tried" gabapentin. I assume you stopped taking this. Again the reason for you stopping it is significant. I can think of 2 possible reasons for you doing this.
1) It caused such distressing side effects that you couldn't tolerate it.
2) It didn't appear to work.
These are affected by what dose of gabapentin you took, how long you took it for and whether you were still taking ropinirole or pramipexole at the same time.
Side effects of gabapentin quite commonly occur at first. -
* These may be worse if you're taking a DA at the same time.
* They may diminish after a while as you get used to the med, usually a few weeks.
* Individuals vary and hence for some people side effects are more severe and/or don't diminish with time.
Effectiveness
Gabapentin can be effective but several factors can affect this -
* Gabapentin takes at least 3 - 4 weeks to start working. Stopping taking it before 4 weeks because you think it isn't working is premature.
-
* It's harder to get the dose right than with a DA. You have to be taking at least 900mg before you can say it's not working. You may need even more.
-
* Gabapentin can work if you're taking a DA at the same time. However it won't be very effective if the DA is causing augmentation OR you're suffering DA withdrawal effects due to reducing the dose of the DA.
Comparing DAs to gabapentin : Both cause side effects. For some the side effects of gabapentin are possibly a bit worse. DAs commonly cause complications of loss of efficacy and augmentation. Less often they cause Impulse Control Disorders. Gabapentin does not cause these. In a few people it causes visual problems e.g., tunnel vision.
Gabapentin is from a kind of med known as an "alpha 2 delta ligand" (α2δ). Another med, pregabalin which is also an α2δ is also used for RLS. It has more or less the same characteristics as gabapentin, but it is more potent. Sometimes when gabapentin doesn't work, pregabalin does.
Pregabalin is preferrable for RLS, gabapentin is possibly better for nerve pain.
DAs and α2δ's are currently accepted as the "first line" meds specifically for RLS. There are as yet no other meds specifically for RLS.
If these first line meds fail then this is known as "refractory" RLS. In this case an opiate may be prescribed for it.
The one recommended in the UK for RLS is codeine. However, some doctors may prescribe tramadol.
Neither of these are particularly potent enough for RLS. They also have side effects and "limitations".
Also in the UK targinact (oxycodone and naloxone) is actually licensed for refractory RLS. The side effect of this may be less than for codeine or tramadol. It also has "limitations".
One of the limitations of these opiates is that they are potentially addictive and hence doctors are reluctant to prescribe one. As a general rule, mainly GPs will refuse to prescribe codeine or tramadol. In which case to get such a prescription and to get one for targinact you'd have to see a specialist. The specialist may also refuse.
In some respects opioids may have some advantage over DAs and α2δ's.
Zolpidem
The advantage of Zolpidem is that it can help with sleep if that is a problem due to RLS. However, it doesn't really affect RLS symptoms themselves.
The other advantage is that it is short acting and may not leave you drowsy next day.
One drawback of it is that it is reputed to be highly addictive so GPs may be reluctant to prescribe it or will only prescribe it on a very limited basis.
Another is that it may only be of limited help if RLS symptoms are severe.
Another is that it can cause sleep disturbance noteably, sleep walking. This can be quite dangerous.
Zopiclone is similar but hasn't the same reputation for sleep walking.
Some people find a benzodiazepine helpful, but they have limited value. Clonazepam is the most common, but it is NOT short acting!
Apart from RLS medications two other things are important in RLS
-
1) Aggravating factors
2) Iron deficiency
Aggravating factors
Many medications used for other conditions may make RLS worse. It is better if they can be avoided, if possible.
RLS can be made worse or even caused by other conditions e.g. anaemia, diabetes, neuropathy or chronic kidney disease.
Diet can be a factor in RLS, alcohol and added sugar can trigger RLS. Carbohydrates, gluten and lactose can casue subclincial inflammation. Inflammation may also be associated with SIBO or IBS. Dependning on which an appropriate diet may help with RLS e.g. low carbohydrate, low oxalate, gluten or lactose free or anti-inflammatory diet.
Iron deficiency
This is a causative factor in RLS and is low levels of iron in the brain. Hence can occur even if there is no anaemia.
In this case iron therapy is a treatment for RLS as opposed to RLS meds which just relieve symptoms.
Iron therapy is not always successful, but when it is, it's probably the nearest you'll get to an ideal treatment fior RLS.
In order to assess if you may benefit from iron therapy you will need a blood test fior serum iron, transferrin, ferritin as well as haemoglobin. The key result is ferritin.
Dear Manerva. I was prescribed Ropinirole initially and struggled with the way I felt next day. Another GP said to try Gabapentin but that was not Very successful ?
I am now taking Promipexole and upped it last night to 2 x 0.088mg which was in the instructions to up it after 4 to 7 days. I had run out of the 5mg Zolpidem tablets so took a Sominex Antihistamine at around 2am. As the problem I have is, I take small amount of Valerian Root before sleep around 11pm. Which was recommended by my Cardiology nurse at Stoke. But always seem to wake again around 2am. If I then take the 5mg Zolpidem I then usually sleep until around 7am without any side effects. I Think I was being to impatient when taking Ropinirole and Gabapentin by expecting results straight away. Can you please advise on which medication will be best for me in the long term
It sounds as if you gave neither Ropinirole a proper chance. It also sounds like you've only recently started taking medication for RLS.
Your doctor should tell you to take no more pramipexole than is needed to be effective. If one 0.088mg tablet worked then you shouldn't take two.
If two don't work this is a dilemma, because nobody should really take more than that. This runs the risk of complications. Pramipexole is NOT a long term solution.
It also may mean, as I wrote before, that you don't actually have RLS. Who told you that you had and when?
Some would claim that an opiate is best for RLS, but as both Jools and I point out, it might be difficult to get a prescription.
If you can't get a prescription for an opiate, then if you do have RLS, pregabalin may be better than pramipexole. It takes 3 - 4 weeks to work and at first it can make you drowsy and dizzy. Ropinirole probably did that too. It's because you need to get used to it.
Unfortunately, you can't just stop taking pramipexole. The longer you take it and the higher the dose, the harder it will be to stop it.
Don't overlook iron tberapy or avoiding aggravating factors. It's possible you might not need a medicine at all.
First, it may be worthwhile confirming you really do have RLS.
Your doctor doesn't seem.to know much about RLS treatment at all.
My own doctor changed my gabapentin to 300mg taken at night. Which seems to have worked with the application of Magnesium Butter to the bottom of my legs just before I get into bed. So things have improved of late thank you. Except for tiredness during the day from A/F medication. Bisoprolol I think but thanks everyone for the advice 😊
I checked with my doctors and my ferritin level was 85 which I also read is an ok level for Rls. ? But have ordered some iron slow release tablets from Amazon. They are the UK’s favourite and slow release so will give them a try if you think advisable ? Many thanks for your help Regards. Mike.
Sominex will probably worsen your RLS as it’s a sedating anti histamine. Sadly all the sedating ones will be problematic.
As Manerva advises- meds can take some time to work-pregabalin and Gabapentin take 3 weeks to be fully effective.
If I were you, I would persevere with Gabapentin (or pregabalin) and avoid the dopamine agonists as they eventually cause augmentation which is horrendous.
And avoid sedating anti histamines, anti depressants and cough medicines like Benadryl or Nytol or Night Nurse.
Zolpidem used once or twice a week is fine for RLS .
Have had iron levels and thyroid checked at my doctors with blood tests all ok. Have settled for couple of months now on Gabapentin 300mg taken half hour before bed time. Also apply about a grape sized amount of Magnesium better to the bottom of my legs just before getting into bed. This seems to be working very well with the occasional Zolpiem 5mg if i wake in the middle of the night and cannot get back of to sleep again.
Hello again Mike, sorry if I've lost track of our conversation, some of which is 3 months old.
I gather that you're no longer taking the Dopamine Agonist (DA), pramipexole and you are now only taking gabapentin.
Great that you've had your thyroid checked and your doc says it's OK.
If you had your iron checked and your doc just said that's OK too, without telling you the actual result, I'm afraid that's not much help.
The key result in regards to your iron levels is your ferritin level. If your doc did test your ferritin level and it was at least 15ug/L then he/she might say that it's OK. It's "normal".
However a ferritin level of less than 75ug/L is NOT OK for somebody with RLS.
The question is then, did your doc test your ferritin level and was it under 75ug/L? If it was then you might benefit from starting taking an oral iron supplement.
I'm also sorry to say, I'm not convinced you have RLS at all. You've never described any symptom so I can't say one way or the other.
However, you took two dopamine agonists, ropinirole and pramipexole which are supposed to be very effective for RLS, but didn't seem to benefit from them.
In addition you're currently taking such a low dose of gabapentin that if you do have RLS, I would not expect that dose to be effective. It might help you sleep however.
my legs were jerking uncontrollably before using Gabapentin and Magnesium butter. I am also in Amiodarone and Bisoprolol which I have to take to control my high heart rate A/F. So this medication may be part of the problem. Which iron supliment is best to take as its hard to get hold of my own Doc at the moment. so might try an iron supliment ?
You need to know what your ferritin level number is before taking any iron supplements too much iron can be dangerous a low ferritin level can for some be a reason for having RLS snd raising the level to 100+ can help for some people. Altho the RLS experts recommend 300. So you need to ask your doctor what your ferritin level was when you had your blood test done.
ferritin level is 85 which in line says is ok for rls but you think its to low. So have ordered some slow release The Uk’s favourite according to amazon which i will give a try. Should I take them once a day as the bottle says ?
It should preferably be at least 100 and ideally 200.
However, as it's over 75 it may not be possible to raise it by taking an oral iron supplement.
You could try taking a supplement anyway, it should do no harm.
An over the counter one will do. "Gentle" iron, ferrous bisglycinate is recommended. To ensure it's absorbed effectively it's best to take it once every TWO days (not daily). Take it 30 mins before or 2 hours after eating along with a glass of orange or a vitamin C tablet.
I got from Amazon arriving tomorrow some Feroglobin Gentle Iron capsules which says on bottle helps with Haemoglobin and red blood cells. It does not say the quantities it contains. Maybe it will on the packaging when I get it tomorrow. Do you think I should take one capsule per day or one every other day ?
Again thank you very much for your help and advice. Regards. Mike.
If you changed from Ropinirole to pramipexole- you probably did so because it had stopped working or was making the RLS worse. Pramipexole would then just make matters worse.
GPs haven’t got a clue about RLS or augmentation on Ropinirole and pramipexole.
I suggest you read the pinned post on Augmentation and if it rings bells, take steps now to get your life back.
Also, many of us on the UK are prescribed low dose opioids for RLS. Many GPs are unaware that they are extremely effective at low dose, long term and do not cause addiction.
I have posted links to research studies on this so look at my posts.
A neurologist is more likely to prescribe opioids because GPs may not have the time to research properly or read the studies showing that they’re safe and effective if no history of drug abuse.
For RLS, best to take Gabapentin at night only. It causes dizziness, double vision & loss of balance but these side effects tend to lessen after a month or so.
Monitor how you feel and if 100mg continues to work then you could stick at that dose.
However, as Manerva has stated, you need to establish whether you actually have RLS.
Also, as he advises- pramipexole can’t be stopped cold turkey so if you’re going to reduce it, do so very slowly.
It may be that you’re suffering insomnia rather than RLS and Gabapentin will act as a sedative which is probably why you slept so well.
Definitely have a look at the RLS criteria and discuss fully with your doctors as you should not be taking drugs for RLS if you don’t have it.
I have now been taking 300mg at night for a couple of months as reccomended by my own doctor not a locum. I also put Magnesium butter on my ankles before getting into bed. This seems to have stopped my legs from jumping badly when I get into bed. I am still taking Zolpidem 5mg as required if I wake around 2am which i do sometimes. This sleep problem has only happened in the last year since taking Amiodarone and Bisoprolol for Itregular heart beat A/F. I was hoping for second ablation to sort that but all hospitals are running behind with covid 19 so can’t see Stoke hospital sorting the problem any time soon. But my restless leg problem has gone for now with the help of Gabapentin. So things not to bad at the moment except for tiredness during the day from Bisoprolol I think.
That’s great. I hope you get to have your op soon.
Just to make you aware that although doctors may make light of prescribing these medicines, they are in fact potent dependency producing drugs that affect the nervous system.
You cannot then safely stop and start them as if they were the equivalent of something like paracetamol.
There are consequences to taking them and there are consequences to stopping them.
You still give the impression that you were only recently prescribed these medicines and if this is so, it is unusual at your age.
I also have the impression that you are taking 2 times 0.088mg of pramioexole. If that's the case you must not start taking ropinirole again, because they are both dopamine agonists, so this would be like taking a double dose.
You should really consult your doctor before stopping or starting any of these drugs.
As you took the gabapentin last night, I hope this doesn't mean you didn't take the pramiopexole. You must not stop taking pramipexole suddenly, this is dangerous. If at any time you wish to withdraw from the pramipexole, you must do it slowly. I estimate it would take you at least two months to wean off the pramipexole.
As regards the gabapentin, drowsiness and dizziness are side effects and it may take a few weeks to get used to the drug after which these effects may diminish. They don't for everbody so you may need to stick it out to see if it does or doesn't for you.
Only take it at night and take it 2 - 3 hours before bedtime. The doctor apparently hasn't warned you of the danger of falling.
The starting dose is usually 300mg and for RLS this is ONCE a day, at night. However if you're drowsy from taking 100mg it might not be a good idea to suddenly take 300mg.
I would say it might be better to consult your doctor but I'm afraid your doctor appears to be quite ignorant. If he/she prescribed gabapentin 100mg morning midday and night this would make you at risk of falling in the day. That is a prescription for nerve pain, not RLS.
As for your medicines fior your heart Bisoprolol is a beta blocker and can make RLS worse. A side effect of Amiodarone, albeit rare is a movement disorder. RLS is a movement disorder.
I suggest you give more detail of your history of being diagnosed with RLS. Who diagnosed you and when? What are your symptoms and how long have you had them?
From what you've written so far I'd say it's possible that you don't have RLS at all, in which case no RLS drug is going to help you.
Until this is clarified, I suggest you don't take ther gabapentin because if you don't have RLS it will do you more harm than good.
Why would you start Ropinirole? You’re on pramipexole? The tired feeling should settle down in a few weeks. Gabapentin is a sedative, so if you’re still taking zolpidem and the anti histamines you’ll feel tired.
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