Trying to get off Ropinirole

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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Trying to get off Ropinirole

Postby zeefy » Fri Feb 08, 2019 1:55 am

Hi everyone. I am new to this group. I have zipped through some of the threads and am trying to get through as much as I can. I am on 3 mg of Ropinoral a night, and am trying to get off of it as quickly as possible. I have lost my prescription coverage. I am looking for advice. I am in my late 40's, female. I first got severe RLS at 39 when I was pregnant. It went away after I delivered, and then came back 6 years later. Ferritin levels are 58 and have been as low as 7. My diet is not the healthiest, and I'm overweight (I'm sure that doesn't help matters). My RLS is horrendous. It allows me ZERO sleep at night if I don't take the medicine (the medicine does work). Any suggestions on what might work for me, other than prescription drugs? Thank you so much for any input. I appreciate it.

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Re: Trying to get off Ropinirole

Postby stjohnh » Fri Feb 08, 2019 2:56 am

Zeefy, Welcome to the RLS community. You have come to the right place. There are lots of folks who have lots of experience with all facets of RLS.

Not that I disagree, but exactly why do you want to get off of ropinirole? If it is primarily a cost issue, generic ropinirole should be fairly cheap. Good RX says 90 tablets, 1mg each, is $13 at the local Safeway. That is probably less than any other treatment available.

That said: Your dose of ropinirole is too high, and you may be augmenting. Non-prescription drugs that have a good track record of RLS treatment are kratom which helps urge to move and sleep. THC in the form of medical marijuana helps for sleep. RLS is caused by low brain iron and oral iron tablets may help, though improvement may take months. Kratom and THC work immediately, and while not expensive in the range of treatments, will still cost more than the generic ropinirole.

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Joined: Mon Dec 10, 2018 3:55 am

Re: Trying to get off Ropinirole

Postby zeefy » Sat Feb 09, 2019 11:39 am

Thanks for your reply and this information. I'm also just interested in finding a natural remedy, rather than remain on drugs that have side effects. My RLS is incredlby severe though, it's like torture.

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Re: Trying to get off Ropinirole

Postby Rustsmith » Sat Feb 09, 2019 3:45 pm

zeefy, one of the settings for the software that runs the discussion board is that it decides that after no activity for 30 minutes while composing a note, that you must have left and forgot about your note. Because this issue has arisen before, I will change that setting to allow an hour of inactivity so that you don't lose a post again.

Augmentation Evaluation

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Re: Trying to get off Ropinirole

Postby badnights » Sat Feb 16, 2019 9:34 pm

I'm also just interested in finding a natural remedy, rather than remain on drugs that have side effects. My RLS is incredlby severe though, it's like torture.
That is probably not your base level of RLS/WED, you are probably in an augmented state. The dopamine-type medications, including ropinirole, usually backfire after some time and make the condition worse, which leads most doctors to prescribe more of the drug, which makes it even worse, on and on. The initial worsening happens within days of starting the medication for some people, years for others; it happens faster in people with low ferritin and people on higher doses.

Whether you end up on a natural remedy or a different medication, your route will begin with getting off ropinirole, so please read about augmentation on this board, and especially read the pamphlets published by the RLS Foundation on augmentation, and the Medical Bulletin for healthcare providers, which is a good read for patients (and can be given to your doctor if he's not in the know ,..). See the link in my signature block for instructions on how to access these.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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