The Ropinerole is still in the cupboard, some advice plse..

[Phantom38]

Hi i am new here - first post, and joined as a result of researching RLS options.

My RLS normally comes and goes (had it for as long as I can remember), but the last year or so it has become fairly consistent, and wakes me once to a couple of times a night. Sometimes I can shake it off with some exercises, ibroprufen and biofreeze but in the last 3 months it has got worse, and just getting continuous. I rarely get it in the daytime.

I guess you have all probably been here, but I have tried every natural cure I can, and sometimes they worked, but only for short periods. Changed diet, stopped coffee, alcohol, ice cream, sugar, sweet stuff, exercised more, walked more, so now fitter than ever, but RLS doesnt go away.

Finally in desperation, I printed out all the various options and went to our GP for a chat (who has been great) and she sent me off with a months supply of Ropinerole.

That was 4 days ago, and I am putting off taking it, given things you read on this forum about side effects, and the dependency on Ropinerole once you get started, and how hard it is to come off it. Plus its the smallest dose you can get, and members on here seem to be on 3 or 4 times more.

Any advice would be appreciated - I havent ever taken medication for RLS, but its starting to get desperate times.

Thanks

[Hidden]

Hi, it is scarey when trying out meds. Ropinerole can be a saviour for people with RLS. But it is recommended to keep the dose low. So, if you do decide to try it, dont go higher than 1mg. Always start at the lowest dose first, then increase if it doesnt work. If/when you get to 1mgs and its not working, then you will need to get off it by weaning down slowly and trying a different type of med. The Neupro Patch is probably the best out of the dopamine meds to use. There are other med options if you are concerned on starting Ropinerole. Just to ask, if whether you have started any other meds for anything recently, either from your Doctor or OTC. Meds like anti-depressant, anti-histamines can make RLS worse. Look at rls-uk.org for more info on meds and ones to avoid.

[Phantom39 in reply to Hidden]

Thanks Elisse, that's really useful. I don't take any other meds and have taken note of all the stuff from the site, so avoid anti histamine and anything containing them.

I will try a tablet tonight and see how I feel, I guess it may take a few days?

[Hidden in reply to Phantom39]

It SHOULD work the first night. Good luck.

[LotteM]

Hi. Elisse is right.

One other thing you definitely may want to do is to have your GP check your iron in your blood. And maybe at the same time some other things, such as magnesium and all B vitamins.

Re iron, it is important to ask for the exact measured level of ferritin. Normally, that is, not to be anaemic, it should be above 15 or so. For people with RLS, it is advised to be above 75, or even above 100 (check rls-uk and rlshelp websites and other posts here re iron). Ferritin higher than 100 is still within the 'normal' range.

If your ferritin is lower than 75, supply it with iron bisglycinate, aka gentle iron every other day. It will take a while, and in this way you increase your levels without the often occurring side effect of constipation ( with iron supplememts taken 3x a day).

Hope your RLS gets better soon.

[debchau]

Hi Phantom39 not sure about the addiction part I've been on ropinirole for 5 years and I am NOT addicted to them, I hate needing to take them, If I don't take them I do not sleep so do not be afraid to take them, they have better for me than any other pill. But when you get to stronger doses (and you will) the side effects can get worse. But for me ropinirole is the best of options until I start the Neupro patch which I am hopeful will work 24 hours a day because I now get rls sooner in the day and I have restless arms now as well. So good luck and try the pills

[Hidden in reply to debchau]

I think that's augmentation you are describing, the sooner in the day and arms as well as legs part. I really think these dopamine drugs are bad for many folk even if they help at first.

Getting iron stores checked and aiming to get Ferritin above 100 seems to me to be the main aim from absolute experts.

Although I tend to warn about potential rare augmentation from Pregabalin ( it happened to me ) i think it's far safer than the dopamine meds and I think pregabalin is otherwise now regarded as 1st line

[Hidden]

Actually the opiates are now considered better to take than other meds. Dopamine meds can be useful for many people, the problems come when doctor's keep upping the dosage. Like any med, some can take the DA's some cant, some can take opiates, some cant, some can take meds like pregabalin, some cant. Its always trial and error. As we know there is not a one med fits all.

[Eryl]

The fact that it comes and goes might be an indication that it's food related. Try keeping a food diary, you may spot a pattern. Often it's an ingredient, which means a lot of label reading if you eat a lot of processed food. My big trigger is E202 artificial preservative (potassium sorbate) found in margarine, dips, sauces and a few other things.

[Phantom38]

Thanks for all your comments - I started the Ropinirole 6 days ago, and got an instant cure the first night, and since then no RLS, its the first time for a long time that I have slept through the night. I currently take 250mg so a very low dose, and my ambition is to stick to that level,so I have some questions:

1. Reading all the posts it seems that at some stage I might get augmentation, is that an absolute fact? How long typically might it give me relief before it creeps back? I do have a determination to stay on the lowest dose, or come off and try something else if Ropinirole stops working. Is it that easy?

2. Its made a big change to my quality of life, I have more energy and fell more 'calm',and honestly feel a bit sharper all round. How much of that is down to the effect of Ropinirole rather than just sleeping through the night?

3. I don't seem to be experiencing any side effects as yet, few extra aches but they went away, but my wife said everything seems OK, no obvious changes to her.

So far it all seems good, given the bad press you read about Ropinirole.

Thanks

Martyn

[LotteM]

Hi Martyn,

I hope you take 0,25mg rather than 250mg.....😉

1. I am not sure it is a 'fact'. Some people get relief from ropinirole as long as 10-15 years, some not at all, and I only a few months.

2. I find normal sleep makes all the difference, although I didn't get that from the ropinirole. I am glad you do!

3. I had no obvious side effects. Don't be afraid to increase the dose, but don't go above 1mg. Just pay attention to symptoms starting earlier in the day, or at the end of the night (= early morning). Look at the rls websites for how to recognise augmentation.

Hope it works well and for a long time for you.

[Franklin123]

Hi - I started ropinirole about 15 years ago, still try to keep under 2mg. Because I have pain also I take codeine and sometimes paracetamol. Having tried gabapentin, pregabalin,morphine patches also, I still find ropinirole is for me. Some nights are worse than others (like last night). Try to take it as late as possible in the evening - but before dinner. My usual dose is l.5 mg which means I can have a restful evening to watch TV. Last night I resorted to an extra 0.25mg during the night together with codeine, then an hour later paracetamol, but I`m still here to fight another day.