ReQuip for RLS

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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.
BonnieB
Posts: 24
Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Post by BonnieB »

Thanks, Ann. Well said. My sentiments exactly. I can believe how encouraged I feel now (thanks to you and this forum). Last night was my worst physical night, but I'm hoping they will gradually get better. At least now I know that is possible. I've had this problem for so many years, it's hard to imagine being without it.

I bought online today: (1) Clinical Management of Restless Legs Syndrome, (2) Restless Legs Syndrome: Coping with Sleepless Nights, (3) The Offical Patients' Source for Restless Legs Syndrome, and (4) Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic. I'm sure there's a wealth of information between the four of them. Thanks for that suggestion, too.
:D

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Excellent choices. In some ways, many of us are more educated about RLS than the vast majority of doctors. It's sad, really, but at least it's getting better.

The Foundation works very hard at trying to educate doctors. Many of the RLS doctors who work with the Foundation offer their time to give talks, etc. And, now that the Clinical Management book is out, doctors have no excuse...it offers most of the information they need. So, in 15 years, we probably won't have this problem.

Really, until Requip was approved and the commercials started, there was NO public or physician awareness of RLS. Whether anyone believes that the US should have commercials for drugs, I am thrilled that these commercials created an awareness among patients and doctors that would have taken much longer without.

Per being without the RLS, I also can't imagine being without it. But the special hell of augmentation? That's in another league. That I can imagine never ever having to have again! And gladly.

While we're handing out our thanks, you might want to pat yourself on the back, too. You found this place, you read, and you listened. Then you took action. Nothing against whining, as I do it often!, but without action, we can't expect anything to be different. You knew you needed help, you found it and accepted it. That's the sign of a really strong person.

Welcome to a bunch of other really strong people. We take the help when we need it...and we pass it back out when others do. We're lucky to have you part of it.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

cornelia

Post by cornelia »

I wonder: do you guys think that if low ferritin brings on augmentation, will the augmentation disappear when after iron treatment ferritin level is above 50+?

Corrie

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Corrie, I am sure hoping. Dr Picchietti sure made it sound like he believed it to be true.

I awoke today determined to ask for an infusion. After I get it, then I will try Mirapex again, long enough to reset the opioid receptors. Then, I am hoping to use less methadone (I have tolerance, I'm sure) and to alternate periods of the Mirapex with the Methadone, as each has advantages the other does not. But, that is the thought of a just awakened, tired mind....
Ann - Take what you need, leave the rest

Managing Your RLS

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.

bharrod
Posts: 163
Joined: Sun Jun 10, 2007 3:51 am

Re: ReQuip for RLS

Post by bharrod »

I took requip, it was the worst mistake I ever made. It actually made me have RLS during the day time too, and it made my RLS 10 X worse when I wasn't taking the requip, like during the day time. It was a horrible drug to come off of as well. I would never recommend it to anyone.
Now I take Methadone, and I forgot what RLS is actually.
Mia



BonnieB wrote:I have just located this site and am so glad. I have only gone through a
few postings, but I am going to continue. The postings are very informative.

I am just wondering if anyone has had any success with ReQuip. I have been taking it for months now and had gotten up to 4 mg at night. The only way I got any relief at all was to take 2 mg at 8 o'clock and then 2 mg at bedtime. (But because of taking the 2 mg, bedtime has to be around 9 o'clock when I am just about out of it. However, I'm beginning to think the side effects are not worth it. (1) I don't like having to go to bed at such an early hour and I don't like the spaced-out feeling during the day. For some reason it seems to affect my vision in that it is difficult to focus my eyes at times during the day. Also, my balance seems to be off. I am very discouraged with the medication right now because I am having problems with RLS during the day that I haven't had before. I'm at the point now where I'm questioning whether taking the ReQuip is worth it. the doctor has played with the dosage, and the secret seems to be in taking 2 mg at 8 p.m. which makes me feel like a zombie. At this point, I am thinking about weaning myself off. I am not convinced this is a good drug for RLS.

I did try the teaspoon of mustard last night and got relief (had to do it twice, once for right leg and then later for left leg). Don't know if that will continue working.

Any input would be appreciated. :(

BonnieB
Posts: 24
Joined: Mon Jul 28, 2008 4:07 pm
Location: Antelope, CA

Post by BonnieB »

Mia,

So sorry you have had a similar experience with Requip, but at the same time it's reassuring to know that I'm not the only one having this particular experience. I'm not familiar with methadone at all for RLS. Did you start on it right away after the Requip. It sounds as though it is working very well for you. That's great! :)

SquirmingSusan
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Location: Minnesota
Contact:

Post by SquirmingSusan »

cornelia wrote:I wonder: do you guys think that if low ferritin brings on augmentation, will the augmentation disappear when after iron treatment ferritin level is above 50+?

Corrie


I sure hope so. That whole idea gives me a little glimmer of hope.
Susan

bharrod
Posts: 163
Joined: Sun Jun 10, 2007 3:51 am

Post by bharrod »

I had bad augmentation wtih requip too, and the only way I was told that I would be able to come off of requip without some help of narcotics. So I went to my doctor, and got some Vicodin and quit the requip and started taking Vicodin instead and I took it for a few weeks until I was sure tha the requip was out of my body, then I started taking 5 mg of methadone at night, and that is what I still take. Looking back, I could have taken methadone right away and skipped the Vicodin, because Methadone is that good. I forget now what RLS feels like alltogether, I just haven't had it at all since I've been on Methadone.


BonnieB wrote:Mia,

So sorry you have had a similar experience with Requip, but at the same time it's reassuring to know that I'm not the only one having this particular experience. I'm not familiar with methadone at all for RLS. Did you start on it right away after the Requip. It sounds as though it is working very well for you. That's great! :)

Eternityroad
Posts: 173
Joined: Wed Jun 25, 2008 3:58 am
Location: Las Vegas, Nevada

Post by Eternityroad »

I am just wondering if anyone has had any success with ReQuip.


I have been on Requip for nearly 2 months. The only problems I have experienced are on those rare nights when I forget to take my dose before bed or fall asleep on the couch before retiring. It's a pain, but I take the dose and couple of diazapam and I soon nod off. Right now I am trying to find about the generic equivalent, something called Ropinol so I might cut pharmacy expenses.

I hate the idea of being on Requip the rest of my life so awhile down the road I might look into non-pharmaceutical therapies.

Ken

FidgetBoy
Posts: 317
Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Post by FidgetBoy »

Ann- given your past history of augmentation-- was there a reason you decided to try mirapex again? Is the hope that a higher ferritin level will reduce your potential for augmentation in the future?

I have been on oxycontin for 2 years and while I have found it very helpful along with my neurontin... I have noticed that the dose of narcotic necessary to treat my symptoms is highly variable and it does feel like I have needed more over time. (albeit very slowly...) I would like to go back to a DA if it weren't for all the horrible side-effects I experienced the last go round (personality changes, vertigo, augmentation with a capital A)... I'm curious to see how you do and if addition of a small dose of mirapex reduces your narcotic needs.

I would love to get off my narcotic but the horrible pain that comes with my RLS is unbearable. :cry: Please keep us informed how this goes for you. I would love to see if it works!
Josh

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Hi Josh,

There are a couple of reasons I want to switch. The first is as you mentioned: tolerance to the opioid. The first time I increased, my doctor said, oh, it's because we started at too low of a dose to begin with. OK, it was only a few months after we started, but what's the excuse for the second time?????? I suppose my RLS could have worsened as it is two years later, but, I want to find out. I am hoping that some time away from the opioid would reset those receptors.

I also want to know if this really is true, that people with high ferritin levels do not augment. I'll be a guinea pig to find out. I know what augmentation feels like and will immediately stop the Mirapex should I feel it so it won't get overblown.

If that works, I could try going back and forth between them. Or, try taking the tiniest amount of Mirapex with a small amount of opioid and get the best of both. The Mirapex tends to knock me out at night and given that I want to stay up until 4 or 5 AM everynight, that would be a good thing. The opioid takes care of the RLS for a much longer time, and that's good.

The main problem that I see is that I don't like a couple side effects that are common to both drugs: lack of sex drive and general irritability. Along with impending (or possible already occurring) menopause, I might never want to have sex again.

So, this will not solve all. Just maybe move things around and create a different set of issues, lol. But, it will be novel for awhile!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

cornelia

Post by cornelia »

As I notice tolerance too (on OxyContin) and I don't want to up my dose I have been trying the following for some weeks now and it works for me.

Along with Oxy and Neurontin at night (Tramadol during the day) I take on night 1 an extra Neurontin, on night 2 an extra Requip and on night 3 no extra med and suffer (more severe PLM's) and then the 3-night cycle starts again.
As I said: it seems to work. I don 't want to take a narcotic and a DA every single night, as they both are the main drugs for RLS and what to do when this combination fails to work?

Corrie

bharrod
Posts: 163
Joined: Sun Jun 10, 2007 3:51 am

Post by bharrod »

Wow, you must stay very tired a lot. When I was on Neurontin and Tramadol WOW was I tired all of the time!! I just wanted to nap, or lay down, or just lay around all day, I can't do that now, I have 2 little children at home now.
-Mia

cornelia wrote:As I notice tolerance too (on OxyContin) and I don't want to up my dose I have been trying the following for some weeks now and it works for me.

Along with Oxy and Neurontin at night (Tramadol during the day) I take on night 1 an extra Neurontin, on night 2 an extra Requip and on night 3 no extra med and suffer (more severe PLM's) and then the 3-night cycle starts again.
As I said: it seems to work. I don 't want to take a narcotic and a DA every single night, as they both are the main drugs for RLS and what to do when this combination fails to work?

Corrie

cornelia

Post by cornelia »

No, actually not. Many people like Tramadol because it gives them energy, like it does to me. And Neurontin I take at night and ik makes me sleepy and it helps PLM's. Requip is the one that makes me a zombie.

Corrie

bigu47
Posts: 18
Joined: Sat Aug 09, 2008 6:09 pm
Location: New York

Requip for RLS

Post by bigu47 »

ViewsAskew wrote:

"If you are augmenting, stopping the Requip may be very tough. For some reason - maybe the receptors resetting - once you augment the RLS goes NUTS when you stop the Requip. According to at least three RLS researcher/specialists, the only way through this is to suffer horrendously or to use an opioid to help. Many doctors don't know this, either. I tried three time to quit by myself and couldn't do it."

Hello, this is exactly what I'm going through experiencing Augmentation.
Currently at the limit of 2 mg. dosage twice a day.

Requip works, but RLS symptoms showing their ugly head 1 PM- so I suspect augmentation is present. As an alternative treatment, had third acupuncture session. Still hopefull, but not totally convinced this will be beneficial.

Any tips in controlling augmentation will be greatly appreciated, thanks!

Lee N.

PS: Will be seeing my PCP soon to advise of augmenatation and course of action. Again, any tips- please post or E-mail me privately.

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