Now off Ropinirole

[Daisysparkle]

Hello again. I’ve taken my last Ropinirole after warning off just 1 mg. Augmentation has gone in the day but OMG my legs are so bad in the night. Dr gave me 15mg codeine, I took 2 at 12.45am. Think I slept for 90 minutes. Had to take 2 co-codamol at 5am but never helped. I’ve stated taking ferrous fumarate 322mg every other day. When I told the Dr I was coming off Ropinirole she said there wasn’t much else she could give me. I have just re-read the letter from the Neurologist to the Dr saying that if augmentation were to happen, then he would suggest switching me on to either pregabalin or gabapentin.🤔. Should I see if legs start to settle after coming off Ropinirole or ask for Pregabalin or Gabapentin?

[SueJohnson]

Ask for pregabalin or gabapentin. I gave you the information on how to take it before. I will be glad to repeat it if you want. You should have started it 3 weeks before you came off ropinirole as it takes that long to be fully effective.

[Daisysparkle in reply to SueJohnson]

Thank you. I’m back at the Drs tomorrow

[Joolsg]

The withdrawals will last another 2 weeks and you'll get little to no sleep.Your RLS is unlikely to 'disappear'. It reverts to what it was BEFORE you started Ropinirole.

So, unless an iron infusion or iron pills completely resolves your RLS, you will need medications for life.

So yes, you should be taking pregabalin or gabapentin. They take 3 weeks at full dose to be effective.

So see your GP and show him/her the RLS-UK website which sets out how to take them and the average effective dose.

Take at night only- most UK doctors are still prescribing 3 times a day erroneously. For RLS you take at night.

SueJohnson has also set out how to take gabapentin.

It will settle in a few weeks.

[Daisysparkle in reply to Joolsg]

Hello. I can’t get into my Drs until tomorrow. I’ve had 2 awful nights, no sleep at all. I am thinking tonight going back onto 500 microgram of ropinirole and asking the Dr for pregabalin or gabapentin tomorrow like you said and after 3 weeks then wean back off. I really can’t cope with another night 😩. I’m also on holiday next week and don’t want to go like this. Thanks

[Joolsg in reply to Daisysparkle]

Withdrawal is worse than from heroin.The Withdrawal schedule is set out in Useful Resources on RLS-UK website.

Most people need a low dose opioid to settle withdrawals.

Call GP and say you have had zero sleep and severe all over RLS and are feeling suicidal.

I'm sick of the lack of knowledge and effective treatment.

If you cannot cope restart the Pramipexole and do the withdrawal properly.

Look at detailed advice SueJohnson gave you. Show it to GP.

Withdrawal really should be done in a hospital/rehab centre. It is BRUTAL and many people cannot make it through.

When you do restart, ensure you clear your diary. You will need a month. No holidays/social/ work.

[Daisysparkle in reply to Joolsg]

Thank you. I was very naive thinking that it would be easy to withdraw off 1mg. Ive got all the info ready now for when I start again. Can’t get in the Drs till tomorrow as she doesn’t work Tuesdays.

[Pompeylad]

We're all different of course but for rls I have been on pregabalin for several months and they are magic. The rls and.food allergies have completely gone. Very well worth trying. Good luck.

[Daisysparkle]

Went drs today. Told her I had tried to wean off Ropinirole but the withdrawal symptoms were horrendous and had to go back onto ropinirole. She said in what way? I said my legs were dreadful, pain and constant restlessness with no sleep. She said the ropinirole must of been helping you more than you thought then 🙈. Anyway, stood my ground and said I want to still come off it but with the help of Gabapentin. After going back to her computer and looking she said yes I can give you it. I want you to take 100mg 3 times a day and then come back and see me in 4 weeks. She said you might find that both gabapentin and ropinirole together will work better🤷‍♀️. Anyway, I’m going to take these for 4 weeks with 0.750mg ropinirole and if ok I will still try again to wean off. I do like my Dr but I don’t think she understands a lot about RLS 😊

[sigurdur in reply to Daisysparkle]

If you are at your wits end look into getting kratom, if you can get it where you are at. It could help you tremendously while getting rid of the last milligrams. I did this while coming off pramipexole, which is another DA.

[SueJohnson in reply to Daisysparkle]

Take all of the gabapentin at night. Doctors will prescribe it that way because it used to be only prescribed for neuropathy.