Coming off Ropinerole

[SimonMorriss]

Hi all

At the moment I'm taking 0.5 mg every night and now I'm augmenting.

Im going to follow the advice on here but just wondered why, as I'm on such low dose i can't just stop ropinerole and start the new meds.

I recoken this could be a dumb question so please go read easy on me. 😉

Simon

[SueJohnson]

The usual recommendation is to reduce by .25 mg every 2 weeks. It is the last reductions that are the hardest

[SimonMorriss in reply to SueJohnson]

Thanks, I can tell I'm getting side effects now so wondered if Just stopping is possible! I am worried but it's probably worth it.

[SueJohnson in reply to SimonMorriss]

You can definitely start the new medicine now. What will you be taking?

[SimonMorriss in reply to SueJohnson]

No idea i haven't even been to the doctors yet. Still researching 😀

[SueJohnson in reply to SimonMorriss]

I strongly suggest gabapentin or pregabalin.

[Madlegs1]

Of course you can stop cold turkey.

It's just a question of how much pain you enjoy.?🤔

You can always start and see how it goes.

If badly, then engage reverse gear promptly!😝

Good luck.

[Bobbyjax]

I went cold turkey last January - it was much better than I expected but I was prepared for two weeks of not sleeping. Once I was over the turkey I swapped to pregabalin (which I had in the cupboard after seeing the GP before) at the lowest dose (25mg) then quickly moved to 75mg and it's been really easy since.

[SimonMorriss in reply to Bobbyjax]

Thanks Bobby

Is why didn't you start on the new meds as soon as you stopped the ropinerole.

Thanks for taking the time to reply, it's really appreciated.

Simon

[Bobbyjax]

I stopped the ropinirole completely on the second of January (I went through terrible augmentation when at 0.5mg so just stopped taking it - after discussing with the plan with my neurologist). then I went three weeks without anything to get it completely out of my system. Honestly, I had a couple of bad nights in the first week but then it was really easy. It was clear that the problem was not RLS but augmentation from the ropinirole. After three weeks I went onto the new meds.

[DogBella]

I, too, have reduced ropinerole to .5 mg for about a month now. It has not been easy. I was getting about 2 to 4 hours sleep a night. Now, I have get about 5 to 6 hours interrupted sleep. I think my body has adjusted to lower dose. I am almost ready to reduce once again. I have been taking norco to help with the pain. I think I need a stronger drug for the next reduction as more pain and less sleep. Not sure if I should stop ropinerole completely now or reduce to .25 mg. I can hardly take too much more pain.

[SimonMorriss]

Thanks DogBella.

Thankfully i only get discomfort and no pain.

Stick in there.

Simon

[RLSNona]

I've been taking 2 (.5mg) of ropinirole for a number of years now. RLS seems to be getting worse, so I saw a neurologist just this week, who said I was taking a low dose. "Don't worry about augmentation", he said. I'm confused. what is the recommended dose of ropinirole? and exactly what is augmentation? that is why I went to the neurologist.....I wondered if I was augmenting....in augmentation? can someone clarify? thanks,

[SueJohnson in reply to RLSNona]

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. It certainly sounds like you are augmenting. Your neurologist is wrong. Augmentation can occur even on a low dose. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

[RLSNona in reply to SueJohnson]

thanks Sue.....I have some work to do! I thought this neurologist was good, he took time and seemed to know about RLS. He did do some bloodwork---I'll find out today the results. My iron is at 100, but it was taken mid day after breakfast.

[SimonMorriss]

Thanks for all the comments. I'm speaking to the doctor in the UK on Friday.

Gabapentin or Pregablin is suggested by many of you which I now know are pain killers.

I wouldn't say I'm in pain just discomfort that stops me sleeping. Is it still right to ask for these. In the UK dopamine antagonists are still a primary treatment.

Thanks in advance.