Ropinerole and propranolol might help, ask your doctor ( preferably one who also has RSL, they understand!!!!!!

[Buzzyboy]

Hi my whole family also suffer from RLS and I am so worried that my daughter will one day suffer as I have. Don't Know if this will help but I have recently found that 2 40 mg propranolol in rhe evening followed by 2 Ropinerole just before bed almost guarantees a decent nights sleep. Of course still can't go to the theatre , go out for dinner' go on long journeys etc etc but it helps! Good luck

[Hidden]

I'm afraid that taking propranolol for RLS is unlikely to be effective in reducing symptoms. As a beta blocker it's one of a large number of medicines that can actually make it worse.

If your doctor specifically prescribed the propranolol for RLS it seems to be a mistake.

There are different strengths of ropinirole tablet. If you take 2 tablets then the dose you're taking depends on what strength the tablets are.

Ropinirole, a dopamine agonist, is initially very effective in controlling RLS symptoms. I'm glad that it's working for you and it must seem miraculous after possibly suffering RLS for some time.

I hope however, that your doctor warned you of the complications of taking a dopamine agonist in the longer term.

The major complications of ropinirole are loss of efficacy, augmentation and Impulse Control Disorder.

Loss of efficacy is very common, the drug simply stops working. Doctors usually respond to this by increasing the dose, but this only delays the loss of efficacy and increases the risk of augmentation.

Augmentation is also very common with ropinirole and it can even happen at lower doses. The higher the dose and the longer you take the ropinirole the more likely it is to happen. It could take a few years to happen, but for some people it only needs a few months.

Augmentation is a major and significant worsening of symptoms caused by the dopamine agonist.

Impulse Control Disorder, luckily, is less common, but can be devastating.

If the complications occur they need to be treated by withdrawing from the drug, which unfortunately is very hard to do. The drug is highly dependency producing.

Your doctor has an ethical duty to warn you of the risks of any treatment and should also tell you of alternatives.

Sorry if this is bad news for you, but I am only telling you what your doctor should have told you.

International guidelines no longer recommend dopamine agonists as the first treatment for RLS because of these complications.

pubmed.ncbi.nlm.nih.gov/274...

I imagine you're very happy with your current situation and it's OK to continue with your present dose as long as it's working. However, if it should stop working, I wouldn't be tempted to increase the dose. It would be better to switch to an alternative.

In addition, the first treatment for RLS that could be considered before medication is iron therapy.

This involves having blood tests for serum iron, transferrin, ferritin and haemoglobin.

In particular if your ferritin level is below 75ug/L then it's a good idea to start taking an oral iron supplement with the aim of increasing your ferritin to at least 100, at which point 50% of people with RLS receive some benefit.

Here's a link to some information about iron therapy

sciencedirect.com/science/a...

Another important thing to consider is if you're taking any other medicines which may be making your RLS worse. If there are, if possible, these may be avoided or switched to alternatives.

There are quite a few medicines that make RLS worse including antidepressants, sedating antihistamines, some antacids, some blood pressure medicines and beta blockers (e.g. propranolol).

Here's a link to an excellent source of evidence based information published by NICE and intended as a guide to doctors for managing RLS. You could refer your doctor to it.

cks.nice.org.uk/topics/rest...

[MFNS in reply to Hidden]

I went through hell withdrawing from ropinerole. It worked great for several years ;then my symptoms got worse where i was taking up to 4 mg daily. Often times it didnt work at all. I could not sit for more than a few minutes and had many totally sleepless nights. The only way i could rest for short periods of time was soaking in my bathtub where occasionally i fell asleep. I think this is a dangerous drug and should not be prescribed. Its just like becoming addicted to a street drug and as difficult to withdraw from

[Hidden in reply to MFNS]

I hope you've managed to find an alternative that works for you.

[Joolsg]

I agree with Manerva. Ropinirole is no longer first choice treatment as the side effects- augmentation & ICD are too awful.

[Bruxelles]

I went to my Dr Thursday. After telling him that the Neurologist had given me Sifrol 0.18 mg which didn’t work so he doubled the dose and that made things worse - I started having RLS during the day ,evening and night instead of just the night, plus awake every hour, plus mood changes, he then said go back to smaller, original dose and so I stopped taking it as no point poisoning myself if it isn’t doing the job. After explaining this, my Dr went to great lengths to tell me one had to get the dose right and just keep doubling the dose until you found the right one! It’s pointless talking to these people. I am so fed up of this. The only thing that he.ps SOMETIMES is heat but not always as if my legs overheat it starts as well. I am getting depressed as I am so tired and trying to prepare a move alone. Feel I can’t cope anymore. I take a sleeping tablet every 7-10 days as it usually keeps me asleep 4/5 hrs but not always, like tonight I am up. The Dr did prescribe Setraline for sleeping on a previous visit but Imread that can make RLS worse. When I told him this Thursday he was not very pleased and didn’t prescribe an alternative. I wonder if there are any specialists in this domaine, probably only Neurologists.

[mmjxc in reply to Bruxelles]

i’m not sure what you’re taking to sleep now, but do you think he’d possibly prescribe trazodone? it should help you sleep at least. it might help with the depression, but that could also be completely situational. you’re going through a lot. have you tried any gabapentin, gabapentin enacarbil, or lyrica before for the RLS? also, are you talking to your GP or your neurologist about this? most GPs have no idea what they’re talking about when it comes to RLS.