Lurker with no choice

[LianneC]

Hi all.

I’ve been a member here for a little while but have never gotten around to posting until now.

It’s currently 2am. I’m up for work in 4 hours and my RLS is terrible. I was prescribed ropinerole a month or so ago but tonight is the first I’ve taken it.

My RLS seems to be triggered by hormones around my time of the month. 2 thirds of the month I’m almost normal. By the time I got a GP appointment last month it was at the end of my period.

So my question is - how long does the ropinerole take to kick in? I had to take a day off work last month which is unheard of for me and I can’t afford to again this month.

Thanks in advance

[Parminter]

Hi Lurker, we all lurk.

This might be an iron problem, have your ferritin levels checked.

The iron/RLS connection is huge.

Ropinirole should work more or less immediately if it is RLS - it is used as a diagnostic tool.

It is a drug with some potential problems, so do your homework and take care.

[involuntarydancer]

I would second the comment about iron. Get your serum ferritin checked and get the actual figure not just that you are ‘normal’ which can be as low as 20. With rls you need to be getting levels to over 100. Low iron can trigger rls and can make existing rls worse.

If you take ropinerole it usually works straight away. It is usually very effective initially but you should ideally take it an hour or more before you go to bed. Take the lowest dose (maybe about 0.5mg - you might have to cut tablets in half). In your shoes I would not go above 1mg. Once it stops working at that dose I would reduce and eliminate the drug for a while and use something else such as pregabalin or tramadol.

[LotteM]

I agree wholeheartedly with the two comments above. As you say you only get RLS during your period, then indeed iron is a first and foremost suspect. Please head involuntarydancer’s details re iron/ferritin. And because of the intermittent nature ropinirole may work very well. Just don’t use it the days you don’t need it. It take currently 0,25mg pills of ropinirole - they are available at that low dose.

[Madlegs1]

Also check what has changed for you to affect you ?

There are many triggers for rls.

Have you started a new diet or something happened in your life to cause this.

A food diary can help pinpoint causes.

Good luck.

[Kaarina Administrator]

Hi Lianne

I thought you may like to read this six year old thread that was put on the forum. At least after viewing it, you will see that you are not alone with the feeling that your symptoms are being triggered by hormones around the time of your period.

healthunlocked.com/rlsuk/po....

[LianneC]

Thank you so much for all of the replies.

Before I was given ropinerole my iron was checked but I was only told it was normal. I’ll ask on Monday when I’m back what the levels were - good advice.

Nothing has changed in my lifestyle, diet etc. I’ve always suffered RLS during my period but never to the point where I lost lots of sleep or missed work.

I’ll take the ropinerole earlier tonight as it did eventually kick in last night.

Thanks again everyone x

[Parminter in reply to LianneC]

I have to take it in two doses starting at least three hours before bed, then two hours, more or less. If you leave it much later you don't have a snowball's chance in hell. Then you will waken, and be tempted to take more - it will take two hours to work and you'll be miserable.

Take it early, and do not be tempted to increase your dose before you read all about the problems down the line. They are not inconsiderable.

I am trying to find the courage to taper off because the side-effects are totally unacceptable to me.

[LianneC in reply to Parminter]

Thank you. Do you mind me asking what the side effects are that you’re experiencing?

[Parminter in reply to LianneC]

The side effects that I experience are even worse sleep quality - 'Insomnia' is listed as the most common neurological side effect.

Then there is the compulsive behaviour, a very major side-effect, which is a really serious issue. In my case, it is compulsive shopping, which is odd as I really do not like shopping.

Malls make me want to puke! It has eaten into my savings dangerously, savings that were carefully built up for my next accommodation. I was not warned of this and blamed myself for my ludicrous behaviour until I discovered the source - but it still feels shameful and blameworthy.

Other compulsions may include gambling and sex. This is all in the package insert if they gave you one. I did not get one.

There are heartbreaking stories of suicides following compulsive gambling as a result of dopamine agonists in which the person had totally destroyed the family fortune.

A very dangerous side -effect from which I do not suffer, but others on this site do, is sudden daytime somnolence. So you may fall asleep at the wheel of you car without warning.

[LianneC in reply to Parminter]

Wow! I really need to research!

I’m so sorry you have gone through this and thank you for sharing

[Parminter in reply to LianneC]

Well, Lianne, first you get mad-as-hell, then you get miserable, then you pick yourself up and start fighting for your life, which is what I am doing now.

Hamba kahle - that means 'Go well' in Zulu.

[LotteM in reply to LianneC]

When you aak for the exact numbers of your iron levels, ask specifically for ferritin. The Johns Hopkins RLS website has good ( the best) info on iron in relation to RLS:

hopkinsmedicine.org/neurolo...

[LianneC in reply to LotteM]

Fab thank you!

[TEAH35]

Is the Ropinerole the same as Mirapex and Sifrol I wonder? I am taking Sifrol and yes, for me, it worked immediately from the very first dosage.

[LianneC in reply to TEAH35]

Oh I have no idea. This is all really new to me. A quick google there says they’re different but I’m honestly not sure sorry

[TEAH35 in reply to LianneC]

I just Googled Ropinerole and it is the first drug used in the fight against RLS, alongside Sifrol. However, they are not the same drug.

[Hidden in reply to TEAH35]

Hi. Was scrolling through and saw your question. Requip is the brand, Ropinerole is the generic. Mirapex is the brand, Pramipexole the generic. The former is a dopamine agonist and the latter is a dopamergic antiparkinsonism agent. Have no idea what the difference is.