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Restless Legs Syndrome

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Coming off the drugs

SimonMorriss profile image
8 Replies

Dear All

I find this web site so inspiring and I am so grateful that my RLS is VERY minimal. All I need is 0.25mg Ropinirole before bed to make sure I sleep through. I don’t get pain or any of the other awful symptoms many of you get. I do wish you well in managing your/our condition.

I do read a lot of the postings and Magnesium and Iron keep coming up as ways to manage. I’m thankful for the Ropinirole but at the end of the day it’s a drug and I would rather not take it. Can anyone give me advice about how to come off the Ropinirole and replace with the supplements in a way that causes minimal disruption to my sleep.

Thanks.

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SimonMorriss profile image
SimonMorriss
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8 Replies

Well my opinion is if it aint broke dont fix it. Its a very small dose of Ropinerole you are taking and its working well for you at the moment. Coming off Ropinerole usually means taking a strong pain med, you shouldnt have to many problems with your small dose of Ropinerole. BUT, taking magnesium and iron does not work for everyone, so consider that, You will need to ask your doctor for a ferritin level test, to see what your number is, no one should just take iron pills with out having that test you might not need any extra iron if your ferritin level reads 70-100, taking iron you dont need can be dangerous. Good luck.

Totally agree with what Elise has said and advised !!

If you are lucky enough to have found something that controls your RLS and enables you to sleep, keep with it :)

I take Tramadol and Gabapentin for my RLS and yes they are both drugs but I have no qualms whatsoever about taking them.

Without them I have no life, pretty much 24/7 RLS.

I believe that pacing the house for hour upon hour and suffering severe sleep deprivation is more detrimental to my health than taking the "drugs" which give me pretty good relief and allow blessed sleep !!

SimonMorriss profile image
SimonMorriss

Thankyou so much for your replies and I will stay with it.

As I say I'm very fortunate as my RLS is mild and Elisse even when I forget to take the Ropinirole it's not painful just uncomfortable.

Thanks again.

Simon

in reply to SimonMorriss

Simon, not everyone has painful RLS, but we all do have that urge to move to get relief and we would rather be asleep than pacing through the night. If you think you would be better off of the Ropinerole then try it. If your RLS is mild then maybe you would be better off the Ropinerole and just try a weak pain med. We are all different and have to do what ever we feel is best for us. You can always go back to the Ropinerole if you feel you need to. I would get your ferritin level done tho, just so you know the number. Our response to you, was because most of us are just thankful we can sleep with the meds we take (well most of the the time anyway) Good luck with what ever you decide to do. :)

LoisTonya profile image
LoisTonya

I started on .25 Ropinerole and it worked immediately - such a relief but I gradually needed to increase to 1mg before I learned of the bad side effects and its addictive nature.

The neurologist suggested increasing gradually to 4mg. At 1.25 I felt so lousy that I returned to 1mg and am trying not to increase. Occasionally when I can't settle and getting up to do chores for half an hour doesn't help I do take another .25.

LoisTonya Ropinerole is not addictive, the need to keep increasing the dose is down to augmentation. If you feel the bad side effects and its not working so well for you, then maybe you need to look at trying something else.

jk3842 profile image
jk3842 in reply to

Not start a war but it is additive. I am living proof as I have lived through it. It also causes augmentation at which point I call a saturation point. It is also very hard to come off of .I have that experience. Doctor's that don't know what they are talking about are the most dangerous. I had a doc 40 years ago tell me that I should have a good psychological exam.

Peace!

Kjetil profile image
Kjetil

I started on a .25mg dose of ropinerole some five years back. It worked wonders for a year, but have had to increase the dose and now suffer rather unpleasant augmentation. My neurologist tells me gabapentin is now the preferred first drug, precisely because of the augmentation issues with ropinerole. Be wary if symptoms increase, is my advice!

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