Off ropinerole and start horizant - Restless Legs Syn...

Restless Legs Syndrome

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Off ropinerole and start horizant

tweedy66 profile image
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What is the best way to come off ropinerole and start horizant

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tweedy66
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9 Replies

You gradually reduce your dose of ropinerole and start horizont about 3 or 4 weeks before you know you will finish ropinerole. You gradually increase the horizant. I’m sorry but I’m not familiar with the pill sizes of either drug so can’t say by how much you should reduce/increase each time but given the high dose of ropinerole you are on I would expect it to take maybe 5 or 6 weeks to get to nothing.

Although it is an awful business reducing the ropinerole slowly it is advisable not to stop too suddenly (particularly if you were on a high dose) as you can get Dopamine Agonist Withdrawal Syndrome which apparently can last for years.

You should be prepared though. It is VERY hard finishing ropinerole and typically no sleep at all is possible due to extremely exaggerated rls for about 14 days at the end. The only thing that will help with this is the temporary use of an opioid such as OxyContin. And it is recommended to get a temporary prescription if your GP will give it.

It is also worth trying to get your iron levels up so a serum ferritin test is a good idea at this stage. Get the actual figure - not just that you are ‘normal’. Normal for us is up towards 100 - preferably over 100.

Madlegs1 profile image
Madlegs1 in reply to involuntarydancer

10% per week is a useful rule of thumb for coming off most drugs. The last two weeks is the most difficult and may need help from opiates, diazepam and clonidine to help with some of the withdrawal effects.

Some people have no problems at all.

A lot depends on how much and how long you've been on the med.

Good luck.

tweedy66 profile image
tweedy66 in reply to Madlegs1

Thanks .... I love being able to connect with other sufferers. Everyone is so helpful.

Katerina22 profile image
Katerina22 in reply to involuntarydancer

When you say that you can get Dopamine Agonist Withdrawal Syndrome which apparently can last for YEARS do you mean it??

Madlegs1 profile image
Madlegs1 in reply to Katerina22

Yes, she does!🤗

involuntarydancer profile image
involuntarydancer in reply to Katerina22

I am only passing on what I have heard about this. I have no personal experience of it, Katerina. I believe that the doctors in John’s Hopkins University tend to hurry people off dopamine agonists on the basis that it is going to be deeply unpleasant either way and a slow titration only prolongs the agony. I’m not sure where that stands in relation to DAWS.

Dcb55 profile image
Dcb55 in reply to involuntarydancer

My internist had me do a relatively quick taper and it was agonizing until I began to take hydrocodone temporarily. It was a matter of weeks but I hated it. I will NEVER take that stuff again.

tweedy66 profile image
tweedy66

Thank you....I'll let my PCP know when I see him tomorrow since he's pretty much "in the dark" as far as rls......as probably most general family docs are!

connie50 profile image
connie50

hi I have just weaned of ropinirole it was horrible, you have to take an opiate such as tramadol, that is what is recommended for RLS,the weaning of took me about 6wks.been of it know for about 5/6 mths I was on the 2mg which is the max dose your suppose to take, what I did was every other day I would not take a ropinirole. I think it just depends on what dose your on if you are on a high dose, I would speak to the DR or even the pharmacist. As for the GPS they haven't a clue about RLS.XXXXXXXXXXX

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