On 300mg pregabalin for 8 mths but not working now. GP saying switch to ropinerole. Love to hear your thoughts if this is good advice.

[Davidbaldbloke]

When first taking Pregabalin, it did work fairly well and largely eliminated RL. However, now it doesn't seem to do much at all. GP says switch to ropinerole over a month where I gradually reduce Pregabalin and gradually introduce ropinerole ending in a dose of 1gram of ropinerole. Do you think this is a bad step? I was concerned about augmentation also.

[Madlegs1]

Have you had your iron levels checked?Anything triggering the RLS? Medications, foods etc?

[Davidbaldbloke in reply to Madlegs1]

I did a few years ago and they were ok. Need to get it checked again! Re food, I eat fairly healthily.

[ironbrain]

I took gabapentin at the same time as I had ropinirole. Only the ropinirole worked. Is your GP sure you can't take some ropinirole while still taking pregabalin?

[Davidbaldbloke in reply to ironbrain]

See my original post. Taking both but switching down the pregabalin.

[Hidden]

Please note, you can take both pregabalin and ropinirole at the same time, some people find this combination works better than either one on its own.

Hence there is no need to stop the pregabalin before starting the ropinirole.

This means you will go through a period of possible withdrawal effects from the pregabalin, plus a possible worsening of RLS symptoms, followed possibly by a period of uncontrolled R.S until the dose of ropinirple is sufficient.

Which is unnecessary.

Please also note that it should NOT be planned to build up to 1mg. The starting dose should be very low, then built up in steps until it works.

This may be less than 1mg!

Please read this link

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

One way of avoiding augmentation is to keep the dose as low as possible.

Another way is if it begins yo fail, then don't keep increasing the dose. Although the "official" maximum is 4mg, it's better not to exceed 2mg.

As Madlegs says, you may be missing some fundamental measures which should be taken for someone diagnosed with RLS.

Please read this link

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

[Davidbaldbloke in reply to Hidden]

One 25mg of ropinerole seems to work wonders for me. Since replies under have said do not take ropinerole as it ends up a nightmare, it has put me off taking it. However, it's 12.52am and I have been in bed for 3 hours with legs going mental. Halved my prcegablin dose the last two nights but it's just awful. Oh what the heck to do. Permanently sleep deprived! Dread the nights.

[Hidden in reply to Davidbaldbloke]

Hi. One of the problems with RLS is that most doctors are unfamiliar with how to manage it properly and this is largely due to a lack of training.

It' really important then to educate your self about the condition, it is one where you can't rely on doctors to do the best thing.

It's only because of what I learned form this forum that I managed to get my RLS under control after 10 years having seen several GPs and three neurologists who didn't seem to have a clue.

The first treatment that should be considered for RLS is iron therapy. This is because Brain Iron Deficiency is the main cause of RLS. This is not be confused with anaemia which is a separate issue.

The rule for this isn't that complicated.

You should have a blood test for FERRITIN.

If your ferritin level is below 75ng/mL then you shoud start taking an oral iron supplement.

If it's between 75 and 100, it's better to have an IV iron infusion.

There is evidence to support this, but it's a bit technical.

A morning fasted full blood panel simply means that you have a blood test for several blood iron components (full panel), that the blood should be taken in the morning after having eaten nothing for 12 hours (fasting). Ferritin is one of these components.

The other thing that you should consider is not just simply what might help make your RLS better, but what might be making it worse. There are a lot of things that can make RLS worse. Medications, diet, inflammation, other health conditions and lifestyle factors.

When it comes to medications, more traditionally, (DAs) dopamine agonists (e.g. ropinirole) were the first treatment to be tried and if they failed then an opioid was recommended. More recently, if a DA failed then alpha 2 delta ligands were recommended.

Presently, the ligands are now recommended as the first treatment and presumably DAs if the ligand fails.

Both are still considered "first line" treatments and if they should fail, the opioids are considered the second line treatment.

This to say, as long as ropinirole is working for you then OK, but if it should start to fail then stopping it needs to be considered and opioids would be your next (medical) option.

[Davidbaldbloke in reply to Hidden]

Thank you so much for your very helpful and detailed reply. I will print this off and try and get my GP to arrange these tests asap. By the way, in the end last night I had zero sleep! My worst night ever last night and am a zombie today. I will give in to maybe 3 preg and one ripinorole tonight just to get some sleep. AAAgggghhhh. Thank you again!

[Davidbaldbloke]

Thank you so much everyone above for replies. I had iron levels checked a couple of years ago and they were ok although I can't quote figures now. GP said to reduce pregabalin by 25% a week whilst introducing ropinerole slowly so that after a month, I would be off pregabalin and on ropinerole. I'll read the links some of you gave later today when I have the time. All your points I have noted down so thank you.

[Joolsg in reply to Davidbaldbloke]

A couple of years ago is no good. First thing GP should do is check serum ferritin is above 100 ( although NICE guidelines state 75).I agree with the others. Slowly reduce pregabalin to, say 150mg and keep the Ropinirole dose as low as possible. I presume you've never been on any other dopamine agonists before?

[Davidbaldbloke in reply to Joolsg]

No not been on any DA's before. I 25mg ropinerole seems to be a miracle drug but what people have said below is just putting me off taking anything at all. 3 hours of mad legs tonight and impossible to sleep. Legs going nuts!

[Hidden in reply to Davidbaldbloke]

Here's some information about ferritin levels

sciencedirect.com/science/a...

[Davidbaldbloke in reply to Hidden]

I looked at this but I don't understand it at all to be honest. Way above my head.

[DicCarlson]

Brain Iron Deficiency is STiLL the leading "cause" of RLS. While serum Ferritin levels don't directly correlate with Brain Iron Concentrations - it's all we have! Watch Dr. Early from Johns Hopkins - always a good place to start. How many people have started a course of DAs like Ropinerole and possible horrible side effects and withdrawal problems when all they really needed was iron. I know, I know, when you can't sleep day after day - you will grasp at anything. Docs waved Ropinerole at me and stated it was the only thing I could take! From this forum I learned differently - thankfully!

hopkinsmedicine.org/neurolo...

[WideBody]

A supposed Neurologist looked me in the eye and told me "Ropinerole was my only hope." I augmented badly. If I could go back in time I would have simply walked out of the office. The guy was useless. Check your iron, a morning fasted FULL iron panel, saved my life.

[Davidbaldbloke in reply to WideBody]

Thank you. What is a 'morning fasted full iron panel'? I've no idea what that is.

[bill54321]

I take

[Birdland]

Starting on Ropinirole for me was the worst decision I ever made. I augmented terribly and I took way too much for way too long. I went through hell to get off of it. I believe it effected my dopamine receptors in such a way that I will never fully recover. It’s so unfortunate that something that starts out working so well can end up being so evil.

[involuntarydancer]

Augmentation is always a risk with a dopamine agonist. It can be helpful to keep dose low (never increase from 1mg ropinerole or 0.088mg pramipexole - if it becomes less effective supplement with a different med) and keep serum ferritin high - at least 100 but mounting evidence for 300 and as Jools says you have to get current figure and definitely get the figure - not just that you are 'normal'.

However, I would be inclined to try an iron infusion (if levels are below 300) before starting a dopamine agonist. You could also ask you doctor to look at the recent study about dipyridamole (pubmed.ncbi.nlm.nih.gov/341) mentioned by Amrob. These treatments seem to be rendered less effective after going through dopamine agonist augmentation so might be worth trying them before going on the d/a.