ROPINIROLE SLOW RELEASE : Has anyone... - Restless Legs Syn...

Restless Legs Syndrome

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ROPINIROLE SLOW RELEASE

Ceed profile image
Ceed
8 Replies

Has anyone been prescribed these and, if so please tell me if they proved successful. Much appreciated. Carly.

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Ceed
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SueJohnson profile image
SueJohnson

Do not take ropinirole. It is a dopamine agonist and up to 70% of people on them will suffer augmentation which believe me you don't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at

Https://mayoclinicproceedings.org/a... Also 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 numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Instead of ropinirole have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin.

Ceed profile image
Ceed in reply to SueJohnson

Dear Sue (Johnson)

Cannot tell you how much I appreciate your amazingly lengthy , detailed and oh, so knowledgeable response. I have 'fast read' it and shall give it the deserved attention it requires once I have walked my wee scoundrel! I shall be in touch later! Bless and thanks, Carly.

WideBody profile image
WideBody in reply to Ceed

What Sue said, my experience is. I wish I never heard of Ropinirole. If your RLS is bad, augmentation is an order of magnitude worse!

DicCarlson profile image
DicCarlson

The wicked witch (out of touch docs) and the magic apple (ropinirole)!

Snow White and the Wicked Witch!
Docholiday1 profile image
Docholiday1

Hi Ceed, they worked well to start with, although had side effects never felt well. Now gone onto pramipexole, these are not as good at controlling legs, but I feel better on them.

SueJohnson profile image
SueJohnson in reply to Docholiday1

Pramipexole is a dopamine agonist like ropinirole. See my comments above.

Hami13 profile image
Hami13

Hi Ceed - interesting to see Sue's comments. I've been on slow release Ropinirole for over 2 years. As soon as I took more than 2mg of Ropinirole a day I passed out! They have worked fairly well for me (I now get 3 nights sleep a week as opposed to none) , but after 2 years I do think their effectiveness is wearing off and I'll need to do something different fairly soon. I am writing this on the back of 2 awful nights so I feel the need for a change more acutely at the moment. I also take iron and magnesium supplements.

If you can find something that works that isn't Ropinirole, try it/take it.

Good luck and take care.

John

Cailen profile image
Cailen

Hi Ceed, I have been taking rapinerol for some time, presently 0.5 mg, but was up to 2 mg.To be honest it was not a cure or a large relief at ILS worst. I find myself taking now out of habit or fear that ILS will return to it's worst.

Also at 2 mg causing serious brain fog, and told that long-term use can cause organ failure.

Recently I have found that complete abstinence from fizzy drinks and alcohol goes someway to ILS relief. I imagine also with a better diet and exercise, I might be able to manage ILS, if I was really displined.

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