How to come off Ropinerole

[Crazy_legs]

I’ve had crazylegs for years. Just like my pop. Been on Mirapex and Ropinerole. Tried to alternate every year or so. Last couple months my symptoms have gotten much worse. Any suggestions about how to get off 2mg if Ropinerole and what to take instead?

[Hidden]

If your symptoms are getting worse you are at least suffering a "loss of efficacy" of the ropinirole. You may also be starting augmentation.

Loss of efficacy and augmentation are very common complications of all the dopamine agonists (DAs) used for RLS i.e. pramipexole, ropinirole or rotigotine.

The tactic of switching from one to another in alternate years may have been of some help, but ultimately you were just switching from one DA to another.

As you seem to now realise it's best to wean off ALL DAs altogether.

In answer to your first question. It can be very difficult to wean off any DA. The first thing to note is that you must not stop suddenly, cold turkey. This is dangerous.

The second is that after years of taking a DA your brain is accustomed to it, when you even reduce the dose it is highly likely to cause withdrawal effects These by all accounts can be horrendous, so much so, that some people give up any attempt to get off the drug.

A further consideration is that is whether you have an Impulse Control Disorder (ICD) which is another, less common, complication of taking a DA. This is significant because people who have an ICD can have major difficulty withdrawing from a DA and for some it's impossible.

Assuming you haven't got an ICD the most significant thing you can do to successfully wean off ropinirole is do it SLOWLY. The slower the better. If you're taking 2 mg Ropinirole I estimate that you should do this over at least 3 months and up to 7 months might be better.

Furthermore, it seems logical that the lower the dose you're taking the less withdrawal effects you'll experience when you reduce it. This is NOT the case. In reality, it has been found that the lower the dose gets, the longer it takes to reduce it further.

Here's a suggestion for guidance only. You will need 1 mg tablets and a very sharp knife.

I suggest you reduce the dose in steps of 0.25mg. A quarter of a 1mg tab. You can try in steps of 0.5 mg if you like at first. (Half a tab). Then later as the dose gets lower make it 0.25mg. It depends how you get on.

I suggest you make the reduction every 3 - 4 weeks. Certainly no less than 2 weeks. When you make a reduction withdrawal effects will occur. They should settle after two weeks. If they do settle after 2 weeks then you might want to risk the next reduction. If not wait up to 4 weeks.

It all does depend on your experience of withdrawal effects. Smaller reduction steps over longer periods of time reduces the experience of withdrawals and the opposite increases it. There is evidence to support this.

To spell it out, your weaning off plan could look something like -

1.75mg for 3 - 4 weeks

1.5mg for ditto

1.25mg ditto

1mg ditto

etc.

Withrawal effects usually consist of a temporary increase in the intensity of RLS symptoms and insomnia, sometimes total sleeplessness. This may be at its absolute worse from 24 hours to 10 days after stopping the ropinirole altogether. Some people, as I say, give up trying. Possibly because they reduce too fast.

It also depends on your doctor but some people find it easier if they can get a temporary prescription for an opiate e.g. codeine or tramadol. A "Z" drug e.g. zopiclone can help sleep.

Some people also experience depression or anxiety as they withdraw from a DA.

In answer to your second question.

The commonly accepted alternative to a DA for RLS is an alpha 2 delta ligand (A2D). This is either pregabalin or gabapentin. In the US gabapentin enacarbil is also available.

Pregabalin has some advantages over gabapentin. The A2Ds do not have the same complications as DAs.

They act differently to the DAs. Note particularly that whereas DAs usually work at the very first dose, A2Ds don't. They make take up to 4 weeks to take full effect and also you may have to keep increasing the dose until it's right for you.

A further complication is that although you can take an A2D at the same time as ropinirole and it will work, if you'reducing the ropinirole and having withdrawals, then it may appear the A2D isn't going to work. In which case you won't really know how effective it is until at least 2 weeks after stopping ropinirole altogether

I suggest then, if you choose to try an A2D then you start it at the same time as starting to reduce the ropinirole.

If you live in the UK, I can give you links to official prescribing guides you can refer your Dr to. These are prescription drugs.

Based on these I suggest you start on 50mg pregabalin once every night and build it up in steps of 50mg every week to 150mg. If it doesn't appear to be working once you've stopped ropinirole, you can increase the dose further, e.g. 300mg.

Be aware that A2Ds can make you really drowsy and dizzy at first. Only take them at night. These effects can fade in a few weeks. They can also give you blurred vision.

The other alternative to DAs is an opiate. These are usually reserved for people who's RLS has failed to respond to other therapies. It's not so easy to get a prescription for an opiate for RLS.

Hopefully you're aware that it could help your withdrawal from ropinirole easier, and/or help.make the alernative more effective or, in some cases remove the need for medication alogether if you can correct the iron deficiency that you most probably have.

here's a link to some information on this.

sciencedirect.com/science/a...

I hope this adequately answers your questions.

[Crazy_legs in reply to Hidden]

Thank you very much Manerva for your detailed response. I really appreciate your feedback and this site for relevant and useful information. As it turns out, my Iron is normal and Ferritin is high (348) so I don't think low iron is my issue. I'll proceed with weaning off the Ropinerole and adding LYRICA® (pregabalin) and see where it takes me. In the meantime, I realize it has only been 2 days, but I did not have RLS for the last 2 days (which hasn't happened in months) and the only difference is that I used a product called Theraworx. I saw that someone else on this site had mentioned that it worked for them.

[Hidden in reply to Crazy_legs]

Your ferritin is great!

Good luck with your withdrawal.

[Joolsg]

I second everything Manerva says. I came off Ropinirole in 2016 after being on it for over 18 years. The slower, the better.

Follow Manerva’s schedule.

During the last stage, expect little to no sleep and constant RLS. Make sure you take time off at this stage.

Life off dopamine agonists is so much better. I still get RLS but never in the day or early evening and it’s much less intense and I can get back to sleep within 10-20 mins after doing a few leg squats/stretches.

[rls-insomniac]

If you are taking ropinirole, you can obtain these tablets in smaller doses. I had them in 0.5 mgs and 0.25 mgs when I was withdrawing. It's easier than cutting up an already small pill. Good luck in your endeavours.