ropinerole: I have suffered from rls... - Restless Legs Syn...

Restless Legs Syndrome

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ropinerole

Tryffan1 profile image
3 Replies

I have suffered from rls on and off for 40 years. 5 years ago it became unbearable. The doctor prescribed 1mg ropinerole at night. A miracle! From the first dose I had a full night's sleep. However, within a few months my legs were aching badly and keeping me awake at night. Spoke to a pharmacist who told me it wasn't the ropinerole. As I had arthritis in my knee I put it down to that. Doctor prescribed codeine. Then had to up the ropinerole another 0.5mg during the day. Rls always worse when I'm tired. Then I found this forum. Firstly I felt I wasn't alone. Then I decided to help myself. I have reduced the ropinerole to 0.5mg during the day and 0.5mg at night and a small dose of CBD oil at night. The leg pain has gone and sleep is getting better. Im hoping that my doctor will become better informed about rls and that different medication will become available but in the meantime thank you for all the posts which help me feel I am not alone.

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Tryffan1
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SueJohnson profile image
SueJohnson

I'm glad it's working for you but be aware of the signs of augmentation. Do you know them?

SueJohnson profile image
SueJohnson

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

DicCarlson profile image
DicCarlson

I agree with Sue below. Geeze get your iron levels checked - it could be a much simpler fix! The Rop you're on while magical right now is a Jeckel and Hyde fix - with the paradoxical augmentation looming in the future.

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