Weaning off ropinirol

[jaime77]

Hi! I have been told before but can’t remember how to wean myself off ropinirol, I’m currently down to 0.50mg at night but if I go lower than that I don’t sleep at all! Which isn’t helpful when I work full time, I’m in the uk so my doc won’t prescribe opioids, I’m already taking Gabapentin and that’s not helping! I’m literally at my wits end 😩 my ferritin levels are at 68 a month ago and I take a high dose iron every night, I have been referred to a consultant but god only knows how long that will take, I’ve tried magnesium, baths nothing seems to help 🙈

[SueJohnson]

To come off ropinirole, reduce by .25 mg every 2 weeks or so. 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. The gabapentin won't help much until you have been off the ropinirole for several weeks. As far as the fact your doctor won't prescribe opioids, print out the section in the Mayo Clinic Updated Algorithm on RLS on the use of opioids and mail it to him if you can't see him. Others on this forum may have other suggestions.

[DogBella in reply to SueJohnson]

Do you mean .25 reduction daily for two weeks or just .25 total for two weeks?

[SueJohnson in reply to DogBella]

Daily. so if you were taking for example .75 mg daily, you would reduce to ,50 mg daily.

[SueJohnson]

Do you still have the instructions on how to take gabapentin?

[jaime77 in reply to SueJohnson]

Yes it just says 300mg before bed

[SueJohnson in reply to jaime77]

Let me give them to you again. The beginning dose for gabapentin is usually 300 mg gabapentin. 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 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[jaime77 in reply to SueJohnson]

Thankyou 😊

[Joolsg]

Jaime you need to book 2 to 3 weeks off work to get through withdrawal. Tell your GP and also ask for a sick note. These doctors put us on Dopamine Agonists like Ropinirole and they have ZERO knowledge of the dreadful complications of augmentation. They also don't know that withdrawal is worse than heroin or crystal meth withdrawal for the vast majority of us.Show your GP this withdrawal schedule set out below from one of the top RLS centre in the world. They don't prescribe gabapentin or opioids to help so it is slightly more difficult but it sets out what you can expect. Your GP needs to know how hellish this is going to be.

You will go at least a week with little to no sleep.

It has to be planned. Get hold of medical cannabis from the Medical Cannabis Clinic and opioids from your GP. Tell him they are needed to get you through the constant,intense RLS which will stop any sleep for days. Take a video of your legs and send it to him so he can see your distress.

Reducing by 0.25mg every 2 weeks is the safest withdrawal schedule. Gabapentin will NOT stop the awful withdrawal symptoms. Your RLS will only settle about 3 weeks after you stop Ropinirole. Then the gabapentin starts to help.

The only thing that helped me was cannabis and even that only gave me 30 mins sleep after 4 days of ZERO rest or sleep. Make sure you have someone with you as falls from exhaustion are common.

Good luck.

Texts

[jaime77 in reply to Joolsg]

I’m absolutely dreading it!! 😩

[Joolsg in reply to jaime77]

It's tough but you have age on your side. Better to get off this stuff now than in your 70s like most people now experiencing augmentation.I promise you will be glad you did it. Once off the stuff, the intense daytime RLS disappears and you can sit still in the cinema and during car journeys.

I see someone has suggested Kratom during withdrawal and I can confirm it's really helpful . It's illegal in the UK but you can buy it from Holland and they send it quickly and discreetly. Once through withdrawal you can slowly reduce the kratom and the gabapentin should then kick in.

Best of luck and remember loads of us have been through it and can guide you.

kraatje.eu/contents/en-us/d...

[jaime77 in reply to Joolsg]

Thankyou 😊

[Joolsg in reply to jaime77]

Red vein borneo is the kratom powder you need. Take half to a teaspoon as needed. It lasts about 4 hours. Don't take more than 2 teaspoons for first few days. It tastes disgusting so mix with a little hot water and orange juice and gulp.

Use as little as possible at night only and walk off the RLS during the day.

[Bumble34]

If you can`t get any help from your GP please consider Kratom, normally available within 48hrs from Kraatje in Holland, it helped me enormously and I did take it with my then dose (100mg) of Pregabalin, its not perfect but did help me more than Med/Cannabis. or smoking Marijuana.

[joepublic]

I'm in the UK too & my doc did prescribe Targatin (Oxycodone) so I wound down Ropinirole by 0.25 a month & am now totally on Targatin & Gabapentin and all is quiet. #

[LFIT in reply to joepublic]

Hi - thanks for your post - - what dosage level do run with on both drugs and why did your doc not recommend pregabalin out of interest ? Pregabalin is a faster release variant of gabapentin. How have you got on with targatin - any side fx ?

[joepublic in reply to LFIT]

Gaba is 2 x 100Mg a day & Targ is 2 x 5Mg a day. He has never even mentioned pregabalin. Side effects of Targinact are strange sleep with negative dreams, constipation. On the plus side it works for RLS after years of augmentation on Ropinorole I am free but unable to drink alcohol ever again sadly..

[LFIT in reply to joepublic]

Thanks - the low level of gabapentin is surprising - did you go higher and then reduce? I guess the Targinact is what’s forcing you to go alc free? I’m on 50mg pregab which is equiv to 300 gaba which is a very low dose and rising dosage to at least 100 ie 600 gaba in coming mth and will see what happens ! I also came off ropinirole which was a great feeling in the end

[joepublic in reply to LFIT]

Personally I feel I don't need Gaba as I have dropped from 3 a day to 2 a day with no effect. Targinact is a NO NO with alcohol they have told me. You could die if mixing them. Coming off Ropinirole was the best ever but now makes me question what else I can come off.

[SueJohnson in reply to joepublic]

Both 200 mg and 300 mg are extremely low doses. In fact 300 mg is the usual starting dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you increase your gabapentin (increase by 100 mg every couple of days) you could probably come off the Targinact.

[joepublic in reply to SueJohnson]

OK I'll ask at my next appointment.