Thinking about other options

[Crazygrl]

Hi everyone ,

I just recently joined this group. I’ve had restless leg syndrome at least 20+ years I’ve had it longer than that but I didn’t even know there was a name associated with what the symptoms were I’ve been to a neurologist probably 10 years ago but didn’t follow it because he was not in the insurance I have been on Requip for at least 10years and I have tried very hard to keep my dose at a minimum but now I’m up to 3 mg I take every night I used to alternate between two and 3 mg depending if I had had some wine that night or not because that makes it worse I know we’re not supposed to mix the two. My Iron test have always been fine . my doctor will prescribe the Requip for me kind of based on my request from what I feel I need but I’m a little fearful Of the long term effects Has anybody else had any experience with being on Requip for such a long time at a fairly high dose ? I don’t dare miss a dose because my restlessness is nightly .

Thank You ,

Crazy grl

[nightdancer]

Hi. Welcome! You did not say if you are still getting symptoms of RLS with that dose of Requip. As they say, if it ain't broke, don't fix it. Glad you are aware that the dose has to be kept low. As far as long lasting effects, not much. if you don't get the bad side effects, then you are usually golden until it stops working, if it does stop. By the way, alcohol blocks the dopamine receptors in our brains, so Requip or not, it is not a good idea for MOST RLSer's. You will get a lot of info just from reading the posts here, since the same questions get asked a LOT. But, ask away.

[Hidden]

Hello Crazygrl

It is crazy isn't it having RLS for years and not knowing there was a name for it, or better still a treatment. Even after I knew the name, I thought there was no treatment, you just had to put up with it.

At one time (30 years ago), I even had PLMS (Periodic Limb Movement when Sleeping) and didn't know what that was or that I had it. Most people with RLS also get this.

Requip is a Dopamine Agonist (DA) and it works in your brain. you have to be careful not to take anything else at the same time that makes RLS worse, because as you've found, you have to take more.

This includes the RLS terrible 4 A's. Alcohol, Antidepressants, Antihistamines and Antacids

Unless you drive or operate machinery during the day, you may prefer to have your wine then rather than in the evening, but if you work, don't drink there!

Also with a DA, after a relatively short time you become dependent on it, which means you get problems if you don't keep taking it. Hence as you've found, if you don't take a dose for some reason you get severe RLS symptoms. These are withdrawal symptoms.

You've no reason for stopping Requip, so you won't get withdrawals.

It does seem that the Requip is working for you, so as nightdancer says, it it isn't broken, don't fix it! Keep the dose low! There can be a couple of long term consequences that can occur, especially if the dose gets too high. It doesn't seem as if you have any problems at the moment though, so not to worry.

[Hidden]

Hi crazygrl, i see you are taking 3mgs Requip, i would recommend to keep to that dose and not increase it anymore, Like the others have said if its working at that dose then no reason to change things. IF you find you are wanting to increase it then beware of augmentation, which you can read about on the pinned post on the right hand side of this page, or if on a phone its at the bottom of the page apparently.

[Parminter]

You say that you dare not miss a dose, and that you have tried very hard to keep the dose to a minimum, but that you can no longer do so.

I think you are augmenting, which means you need more and more of the drug to get the same results. This is because the drug causes more problems in the dopamine system of the brain than you already have.

A lot of us are familiar with this scenario.

I think that 4mg is the maximum recommended dose, so when you get to that - what then?

Dopamine agonists are no longer considered the first-line treatment for RLS - because of augmentation, which happens to about 65 % to 70% of us. And that figure may be higher if a longer timeline was taken.

At a guess, half of the people in trouble on this site are here because of augmentation, and the problem of where to go next.

I augmented on a very small dose, I also had all the side-effects that doctors seldom mention, including compulsive behaviour.

First-line treatment now, according to the really up-to-date doctors (not many of those) is gabapentin. After that, there are the opioids.

If the drug is suiting you now, by all means stay with it, but if and when you need a larger dose then you must find another solution.

Stay on this site, read everything you can - doctors are completely uninformed, on the whole, and we need to do it for ourselves. Read, read, read.

And when your doctor says your iron is okay, what does he mean? Your ferritin levels need to be 75 at a minimum, preferably 100 or higher. RLS is a problem of the lack of iron in a certain part of the brain, and the only way to measure it is through a ferritin test. What is 'normal' for other people is not normal for us.