Recent diagnosis

[Dizzy412]

Hi there thank you for letting me join

Fairly recently diagnosed. On Ropinirole and had some nasty side effects. Just wanted to so how others manage rls

Thanks

dizzy

[Pam34]

Welcome Dizzy

Depending on how long you have been on it they may subside. You have to give the drugs a chance so don’t be hasty.

What dose are you on? Ropinirole can work really well but don’t be tempted to increase the dose, that’s when problems can start. Read the link below so you know what to look out for.

rls-uk.org/augmentation-reb...

Any questions just ask. There is a wealth of help on here. Or you can search for other people’s experiences by using the search tool.

Pam

[Dizzy412 in reply to Pam34]

Hi Pam34

I was on 1.5 mg recently symptoms became much worse so have been increasing by .5mg each week, after speaking to gp. However I started to get some very disturbing symptoms. I was hearing things that weren't there, feeling very sick and a banging headache. I had increased to five tablets, totally 2.5mg daily. Phoned secretary at the gp for advice and she said stop taking them, but it wasn't an emergency. so stopped them that night. then last night had 1.5 mg to start them again. feel incredibly tired and still very twitchy which is now involving my arms and upper body.

[Pam34 in reply to Dizzy412]

Hi Dizzy

I despair sometimes! A receptionist has no idea what she has just asked you to do! You can’t simply stop taking them - it will send your legs through the roof! This just proves how little most of the medical profession know about dopamine withdrawal.

The latest consensus is that a dopamine dose should be kept as low as possible. 1mg in respect of ropinirole although unfortunately this hasn’t filtered down to most doctors yet.

So if you have read the link I sent you and think you are suffering from augmentation then you need to discuss a plan with your GP to come off them.

It will be extremely hard, it’s normally suggested you reduce by 0.5mg a week with the help of an opioid. I took 50mg of Tramadol in the evening and it helped me although it was still very very difficult. Without the help of something like Tramadol it will be much worse. I then found the Tramadol continued to work and stayed on a low dose for two years.

So if you decide this is the route you want to follow get knowledgeable before you meet your GP. Remember, he most likely knows very little so make sure you do! Don’t let him swap ropinirole for another dopamine drug and insist on help on the withdrawal.

Read these two articles for alternatives - definitely ask him to check your ferritin levels and don’t accept normal. For RLS sufferers it needs to be over 100.

rls-uk.org/treatment/

rls-uk.org/self-management/

But whatever you do, if you decide to stay on the ropinirole please keep the dose as low as possible.

Let us know how you get on. Lots of us have been there and come through it!

Pam

[macewan13 in reply to Dizzy412]

Hello Dizzy412,

I can empathize with you. I was on Ropinirole, at a fairly low dose but had to stop - nausea, vomiting and fainting, to such an extent that I carried a plastic bag around with me in case I was sick. I also had the voices in my head. I tried Sifrol but more nausea, not so bad as Ropinirole but pretty bad all the same. I have finally come off all DAs because of augmentation but the one which worked best was the Neupro patch, no nasty side effects.

I hope you find something which works for you.

[RosieRow in reply to Dizzy412]

Hello Dizzy

I've only been reading and contributing here for a few weeks, but the advice you get seems to be to be very sound. I am on 1.5mg Ropinirole but have made the decision to withdraw from it before or when I start the next bout of augmentation. I am even considering reducing by only 0.25mg per day and getting an opioid (Tramadol) to help me through it. Pam can really help you with that sort of advice.

However, before I start that my GP is writing to neurology for advice - it may or may not come in time to help - an appointment is probably 9-12 months down the line! So I'm getting my ferritin levels checked, am using magnesium oil on my feet, lower legs and knees at night (which has worked well for the first two nights!!) and wearing compression socks (my flight socks).

I have had really nasty dreams on ropinirole - I rarely used to remember my dreams - so I sympathise with the voices.

Look at all the posts and information you can on here - they are invaluable at getting an overview of what is sensible to try and what is probably better to avoid. We are all individuals and react to things differently, but personal experience of others is as good a place to start as anywhere in trying to cope with this rather rotten condition - I've had it since I was in my early teens and I'm now late 60s!

Take courage!

RosieRow

[Lindy14 in reply to Dizzy412]

I agree with Pam, the receptionist is not a doctor and obviously is not qualified to give out information as she/he did not ask some basic questions as to how to "stop or come off" medication.

Lindy14

[Dizzy412 in reply to Lindy14]

Thank you all for you replies and support. I have just had a phone call from my gp surgery saying it’s fine to stop the repinirole due to the bad side effects, but there is no alternative treatment. So stop them I will. Feeling very uncared for my gp to be honest. I’ve already cut out caffeine. Walk regularly and swim. Not sure what else I can do.