I'm on 0.25 Ropinerole and consider my self extremely lucky compared to many of you, my heart goes out to all of you who suffer. My question is that every night for the past few weeks I wake up about a hour after falling asleep with symptoms. I have to get up and walk down stairs, read the paper for a few mins and then back to bed and sleep through.
Does any one have any thought on why this might be happening and how I can stop it. I have been on Ropinerole for probably close to 8 years now.
Thanks
Simon
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SimonMorriss
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Hello, sorry to hear you're having this problem.
There's 2 possible explanations for this and either one or both may be relevant.
One is that RLS temfs to get worse as you get older.
Two is that dopamine agonists, (DAs), like ropinirole can lose their effectiveness with long term use.
As insomnia, early waking (not just a failure to get to sleep), is associated with RLS. This could also be explained by a failure of the ropinirole OR DAs can cause early waking or both.
I'm not sure about the dose you're referring to. A dose is stated in units not just numbers and different drugs may be stated in different units.
If your current dose is 0.25 mg i.e. milligrams, this doesn't appear at all right. I'm not sure if tablets come in such a low dose and the lowest dose for RLS is at least 0.75mg (750 ug or micrograms).
A typical dose is 2 to 3mg i.e. 8 to 12 times more than you say you're taking.
This is VERY important.
If it's true that you are only taking 0.25 mg then one option is to increase the dose.
However, if you're taking 2.5mg or more then the best option would be to stop taking ropinirole and switch to an alternative RLS medication. This may be a better option any way.
The alternatives to DAs for RLS are either gabapentin, pregabalin or if you live in the US, gabapentin enacarbil.
Do not switch to another DA, pramipexole or rotigotine.
If you do do this, it's best to start the alternative 4 weeks before stopping ropinirole.
Again the dose you're currently taking is VERY important. If it's only 0.25 mg as you state, then you may get away with just stopping it. If it's 2mg or more you need to reduce the dose slowly.
Just to emphasis, whatever drug you take it is essentisl that you are absolutely sure of the dose both in units (weights) and in numbers, including the correct position of the decimal point.
Thanks so much for your reply. Sorry I didn't put the units but it is 0.25mg, I have just checked.
I was / am worried about augmentation which is why I didn't increase the dose and I suppose I should always speak to the GP any way. Saying that the advice here always seem better.
Now I have confirmed the dosage should I ask the GP to up the dosage or change the medication?
Hi Simon, I started ropinirole with the 0.25mg dose as well. Contrary to you, it started to fail me after three weeks. My neurologist told me to increase, which I did after a month, then again after a month and again. I stopped at 0.75mg. That is still considered a low dose,but I didn't feel good about the constant loss of efficacy after three weeks.
You say you have ben on this low dose for 8 years. Well done. As it IS a very low dose, and if your doctor advices, it may help to increase to 0.50mg. However! If you still wake up in te night due to uncontrolled symptoms, or if symptoms spread to other times of the night and day or to other body parts, you should decrease rather than increase. But if you get another few years on 0.50mg, consider yourself relatively lucky. If you get these extra years, I am not sure I would personally go any higher than 0.50 mg. Too little is still known about what happens with longterm DA use - even at a low dose - and how that chances the systems. Possibly irreversibly.
In sum, inform yourself, talk extensively with your doctor and then follow your gut feelings. At least don't wait for your symptoms / lack of effect of the ropinirole to get worse.
Hello Simon, as Lotte says, 0.25mg is a very low dose and is 1/3 of the official lowest dose recoemmended for RLS.
Also as Lotte says, in this case you could try increasing it. However if you increase it and symptoms get worse rather than better, then it would be best to stop taking it.
Doses of 0.125 or 0.25mg are more usual for pramipexole, a more potent DA, with a greater risk of augmentation.
You are already aware of the risk of augmentation and are right to keep the dose as low as possible.
You could also try taking some magnesium tablets a few hours before bedtime. Mg can help with maintaining sleep, and I have found it to be very helpful.
Take half the dose three hours before bed, then the other half one-and-a-half to two hours before bed.
It might make all the difference - I am speaking from experience. When I left my dose as late as you are, all hell inevitably broke loose.
And if you divide the dose you should get better cover.
If that does not work, then you are augmenting.
Should my suggestion help, but you still get breakthroughs from time to time, then ask for Tramadol to help with that occasionally. Better than more dopamine agonists.
I thought I would give an update on where I am now and again give thanks to you all. I had a good chat with the GP and we have upped my meds to 0.5mg Ropinerole frm 0.25mg. I did ask about Gabapentane but she said that I would need three dose's a day and while I could tolerate Ropinerole on one dose a day that felt like the best option.
She also noticed that I have never been tested for Iron deficiency so I'm off to the hospital today.
Going on to 0.5mg gave immediate relief and I'm now sleeping through. One interesting fact I have learnt from here is that a side effect of these drugs in waking early in the morning. This explains a lot! This is one side effect I'm happy with as I can use this time before my wife gets up to watch MY tv programmes LOL.
Thanks to you all for the love and compassion you show. This forum does really help and what is really amazing is that the knowledge which if freely shared to top draw.
One warning. If the ropinerole starts to fail you again in a few weeks time, and then, after upping the dose again (to 0.75 mg), it fails again: be wary! And don't keep in increasing. It happened to me. I stopped at 0.75 mg, also because I had signs of augmentation, mainly return of symptoms in the night /early morning and in the afternoon.
Also, for RLS it is unneccessary to take gabapentin three times a day. An evening dose suffices. But it takes time to build up to effectiveness. A starting dose of 300 mg in the evening only is common for RLS, to be increased slowly to 600 or 900 mg, or more according to need. To increase uptake of higher doses, they can be split in an early evening and later evening dose.
In sum, read all you can, to be prepared if things change again. Of course, I hope your current dose of ropinerole will give you another many years of few to mo symptoms and good sleep.
Edit: LOL. This is more or less exactly what I wrote earlier. Sorry about that.
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