Ropinerol withdrawal.... what now?

[Boofoo71]

So after 15 years I'm off Requip. I'm now 4 days in with zero meds for RLS. A few contradictions of how long it takes to fully leave your system, however, I was hoping that my RLS would magically disappear along with my meds. Unfortunately, thats not been the case. Cannabis didn't help, it just left me stoned, still with severe rls but was enable to walk as the Cannabis made my balance worse, it's not for me. I think my prescribed iron tablets have definitely helped. Also an electric blanket helped to. I'm still on Sertraline, and yes I'm aware that too can be a contributing factor, and also that some people are ok on it. My main goal was to get of Requip because of the impulse control disorder issue. I can look at changing my antidepressant if I feel its not helping my rls. I've taken Tramadol which sometimes takes the edge off. I'm not climbing the walls like last time, albeit I'm certainly sleep deprived. What do I need to do now? Gaberpentin or Pregabalin, and at what dose? I still have symptoms of rls throughout my body and worse in my hands. Thank you 😊

[ChrisColumbus]

First, well done!

Yes, you'll almost certainly need a gabapentinoid or - considering the time that you've been on ropinirole - a low dose opioid. But I'll leave it to the experts to tell you what, how much and when - there's no point me just parroting what I think they'll tell you. I'm sure that SueJohnson and Joolsg and others will be along to help soon.

Again, congrats getting off the rop!!

[Boofoo71 in reply to ChrisColumbus]

Thanks Chris 💕

[SueJohnson]

Your RLS does not magically get better as soon as you are off requip. It can take several weeks or months without any new medication.

And yes gabapentin or pregabalin is the way to go. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It takes 3 weeks to be effective and it won't be fully effective until you are off requip 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 as the peak plasma level is 2 hours. 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 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

[Boofoo71]

Thank you for your advice. Its very much appreciated 💛

[Joolsg]

Huge congratulations. Getting off Ropinirole after 15 years, and suffering Impulse Control Disorder and augmentation is a MASSIVE achievement.As your ferritin is low, it will take ages to raise levels above 200.

If you can afford it, see Professor Toby Richards at the Iron Clinic in Harley Street.

He will give you an iron infusion for around £800. Still contact him to discuss as he may have suggestions to help if money is tight.

As iron is helping, you are probably a good responder.

If iron infusions were first line treatment, you would never have needed poisonous dopamine agonists. The benefits were known in 1953!!! 70 years of unnecessary suffering for so many of us. Iron helps around 60%.

In the meantime, as you're still suffering RLS, and until you get serum ferritin levels above 200, ask for pregabalin or gabapentin.

The RLS UK website sets out dosing and timing.

If the iron infusion works, you can then slowly reduce pregabalin without withdrawal effects.

Well done.

[Boofoo71]

Thank you Jools even though it was a bit rough and still is, I'm free from a drug that has ruined a good part of my life. I can't thank you guys enough for highlighting how dangerous Requip and Rotigotine is. I felt like an addict, taking more of a drug that was actually increasing my symptoms. It wasn't easy but I feel great knowing I'm off it, finally. I know it will be trial and error with Pregabalin or Gaberpentin but it will be worth it. On a separate matter, it's been hard to work out whether if its the menopause or withdrawal from dopamine agnostics, but my hot flushes have got worse and now I have night sweats all since I started withdrawing. Oh the joy of womanhood!!! Albeit I do seem to be thinking more clearly. Pros and cons 😕💕