Restless Legs Syndrome (RLS) Discussion Board

Hi, I've been on Mirapex for a few years now and it's helped a lot. Over time I've had to gradually increase the dose and now I'm taking 1.0mg with the occasianal 1.25mg.

The Mirapex isn't working as well as it used to and I'm noticing augmentation and drowsiness that I didn't have before. On long car trips I have to stop and take 15 minute naps to get rid of the urge to drop off to sleep. I want to get off the Mirapex for a while (take a drug holiday, as they say) and resume again maybe a month later. Not sure what my PCP will prescribe to cover me, but I'm going to push for an opioid which has worked for me before.

So I'm asking if anyone else has stopped their RLS med for a while and did it work at a lower dose when you resumed?

Thanks.

Good question, I would like to know too.

Corrie

The doctors "say" it works. But, the readers here? After augmentation once, many just don't want to try them again. And, after you augment twice (many of us here have), they say not to use them again for a long time. For me, it's been over two years and I while I think about it once in awhile, I really didn't enjoy that period, so I am reluctant to go back.

Now, Vera in Florida, who posts on the Yahoo board, has this experience. When she has the first hints of Mirapex not working so well, she switches to Requip. After 3 weeks or so, she switches back to Mirapex. She's done this now for many years - at least 3 or 4 (could be more), and she's never had to increase her dose.

I think the experts say you need to stay off for at least a couple of months. Then try at the original dose that worked.

I do know that getting off of it at this point is important. Several of us have experience permanently increased RLS because of augmentation.

Followup:

I saw my PCP today and explained that I'd had to bump up my Mirapex dose to the point of getting unpleasant and dangerous side effects (becoming drowsy while driving) and augmentation had been setting in. I told him right off I wanted to stop the Mirapex for a month and substitute an opioid, and hopefully I could resume the Mirapex at a lower dose.

I could tell he was reluctant because he offered some other stuff that I knew wouldn't work--Sinemet (no way) Requip (tried it once, no different from Mirapex), Vicodin as needed for breakthrough rls (no, I want to completely stop the Mirapex).

He did agree to give me a Vicodin script at the end with the comment that he's giving me thirty tablets. I picked up on some kind of implication with that comment, like "don't ask me for any more." I might be a little paranoid though.

So I got the Vicodin at the pharmacy and the label reads: "Take one or two tablets at bedtime as needed for significant severe pain." What the hell? No mention of restless legs or what I'm trying to do? I'm suspecting my doc is covering his butt with those directions somehow.

Anyway, it's nearly time for my evening Mirapex and I'm not too sure how to go about this. I think I'll take half my usual Mirapex and one Vicodin and see how that works. I'll let you all know what happens.

Bjorn

Forgot to mention that I just joined this discussion group a couple days ago. I appreciate reading about all your experiences.

Hi Bjorn and welcome to this group. I am sorry for what you are going through. I hope that the meds the dr prescribes for you will give you the much needed relief that you so much deserve.

Please keep us posted on how you are doing. You found a wonderful support group.

Hopefully it won't be too tough of a withdrawal. Stopping it isn't hard. . .but sometimes the RLS gets worse for awhile. This seems to be the case specifically with augmentation. In that case, you may find that the script he wrote won't come close to covering you. Here's my fingers crossed that it does.

If he won't come around. . .you may be in the market for a new doc Man, too many of us have been there and it truly sucks. But, sometimes it's the only way to get what you know is best for you and your body. We need some kind of Vulcan mind meld when in situations like this - both to transfer our knowledge that we've picked up and our feelings of what it's like to be in these situations.

Thanks, Bjorn for your questions and the responses~I've been wondering the same things about changing up meds to keep away from augmentation. After 2 horrid experiences with augmentation (once on sinamet and recently Mirapex) I don't want to go there again. I now experience rls 24/7 most days and like others, want to avoid augmentation at all costs. But, with the job I do (and the fact I don't react well to many drugs), I can't take some of the alternative meds my dr. has suggested (Ativan & Klonopin for sure). I went the first 3 weeks in July with no good sleep and several days with no sleep at all after I augmented on the mirapex (was taking .25 mg noonish then 2 at bedtime along with ultram throughout the day).

My dr. tried me on 8 different meds over 5 weeks trying to help me get some relief. After the 3 weeks of sleep deprivation, I did the drug holiday on my own - relying only on the ultram to get me through except for the week I was not on call and I added in Ambiem at bedtime.

I started sleeping almost immediately - and I've been getting 6-7 hours each night!!! Once I'm asleep, I can usually stay asleep because now my legs aren't acting up when I wake up in the middle of the night.

So back to the original thought here...(sorry-the ADHD kicking in!)...I want to try this:
weeks I'm on call and can't take ambiem, using my Mirapex only at bedtime.
weeks I'm off call, hitting the ambien to be sure I'm getting quality sleep and avoiding that sleep deprevation stage I was once at.
Of course, I'll continue the ultram PRN daytime and preventive evening/nights.

Anyone tried using the mirapex every other week instead of consistently?

After the post above about the lady alternating requip and mirapex I wondered if I should suggest this to the dr but I passed out cold after 2 requip and am scared to try this again.

Ok, the first night went pretty well. I took 0.5mg of Mirapex, half my usual dose, and a Vicodin. Had some rls briefly, but then fell asleep and stayed asleep. Woke up with a headache, popped an Imitrex and felt fine after that.

Tonight I'm not taking any Mirapex, just the Vicodin and I hope that will be enough. I've taken Mirapex every night for about 4 years so this is an event for me. Talk about drug dependency...

I'll let you know what happens.

Bjorn

I took one Vicodin and no Mirapex at bedtime last night and the moral of that story is: don't do it. At least not cold turkey like I did.

The Vicodin seemed to work for about an hour, but then I got the little twinge in my arm that told me Here it comes! (I get rls symptoms more in my arms than my legs anymore). And it came on strong, like I hadn't had in years, making me shake my arms like a madman to get rid of it.

I decided to take another Vicodin because I was determined to get off the Mirapex. The extra tablet made me real drowsy, but not drowsy enough to overcome the crawlies and then it was 2am. I gave up and took a Mirapex, but only one-fourth of my usual dose and ... it worked. Must be the combination of drugs that made it effective?

Kind of groggy right now, but I'm happy that only 0.25mg Mirapex took care of it. I think I'll try that dose plus one Vicodin for a few nights.

ViewsAskew mentioned that Vicodin probably won't be enough to cover me and I believe that's probably going to be correct. Hope not, but I keep seeing references to people on this board having to use some heavy duty opioids, and I don't want to go that far.

Bjorn

The Vicoden might cover you IF you have enough of it. What you have will probably not (as you've found out).

There is no other way to stop the Mirapex. I tried. 3 times. I'd cut back to a piece of a .125 and try to stop. It would get SOOOOO bad that by the 6th or 7th day of NO sleep, I'd go back to it. I guess I would have gotten through it eventually. . .but some people have it take a few weeks before that augmentation stops. Ugh.

I tried propoxyphene - not nearly strong enough to handle it. Then I tried Vicoden. It might have worked, but I was allergic to it. Then I tried Ultram. It did OK for an hour or so, but then the RLS was back terribly. So, in the end, the doc used Methadone. I could have switched to another drug after the withdrawal from the Mirapex, but the doc wanted to keep me on the methadone. Fine by me except the hard part of getting it. It's actually an extremely safe drug (as drugs go) and exceptionally well studied (better than most of the ones we take). It just has a bad reputation (mostly undeserved).

Update:

After a couple of weeks of trying, I still haven't been able to stop the
Mirapex. I'm down to 0.125mg which is one-eighth my usual bedtime dose, but I can only do that by taking two Vicodin at the same time and they only cover me for two thirds of the night.

What's concerning me are the rls crawlies that come on now at nearly any hour. I can't take a nap at noon or sit down to read in the afternoon because my legs are jittery. And that's another thing. Now I'm getting rls in my legs more and more when it was only in my arms before.

Judging by my PCP's reluctance to prescribe the Vicodin in the first place, I'm pretty sure he'll make some comment in my chart if I ask for more, like placing a Drug Seeking Behavior stamp next to my name in big red letters. Well, maybe not, but that's how it feels.

I'm going to ask for a neurology consult. That will take a month or so and in the meantime I'll have to bump up the Mirapex.

Thank you all for your input. Greatly appreciated.
Bjorn

Bjorn, from my own experience and that of others here, there are only two ways to get out of your situation.

First - just go for it. Dump the Mirapex ASAP and just deal with the increased RLS for awhile. Many people have done this, but it is very difficult. You will not sleep much, if at all, for anywhere from a week to a few weeks. BUT, once it's over, the RLS most likely will reduce back to a prior level (no guarantees, but the longer you are augmented, it seems the higher the risk that it will stay elevated).

Second - wait for the neuro and hope he/she agrees, understands, has read Dr Buchfurer's book and the algorithm and agrees to give you enough opioid to get you through this. In my case, this meant going through several docs and 6 or 7 months before I could get it right. I wish, now, that I'd taken the first option above. I have no way of knowing what would have happened, but my RLS is permanently MUCH worse and it's due to the augmentation. I had no idea it would take that long.

So, if it were me and I had a do-over, I'd try one neuro. If that didn't work out, I'd take vacation time or whatever I had to do to get off the Mirapex ASAP. Of course, that is just me and what I'd do - I'm not a doctor and I have strong feelings about this given what happened to me. That may cloud my judgment.

ViewsAskew,

Thanks for the suggestions. I think I can stop the Mirapex if I take two Vicodin at bedtime, which I'll try tonight. Trouble is, the Vicodin doesn't last that long so I'll have to take another dose four or five hours later. I'll run out of it before my neuro appointment in a couple of weeks. I'll cross that bridge when I get to it...

I'm guessing that the methadone works well for you because it remains active for a long time. Have you ever tried the long acting morphine tablets or the fentanyl patch or Oxycontin?

Bjorn

The good news is that two weeks may be all you need to get the RLS back down to a managable level, so that you won't need those drugs - or at least as many of them. Docs don't like it when we self-medicate , and, in all fairness they have a valid point, so be careful if you go down that road. I'd be lying if I said I'd never done it, though .

I went through a LOT of docs to get where I am now. After the slew of more accepted RLS drugs, a neuro gave me propoxyphene, like 1 tab a night. I admit to trying as many as I could to stay within the dosing limits just to see if it would help. It didn't dent it, so I tossed those to the side. Then my GP tried Vicoden. It didn't agree with me and I don't cotton to hugging toilets, so, those got tossed, too.

A couple of docs later, my new doc tried Ultram first. It helped a bit, but didn't work. I took him info from Dr Buchfurer's website and the algorithm, so he went straight to methadone. So, for me, that worked and I've not felt the urge or need to try anything else. For RLS, it seems to last up to 12 hours, which is miraculous for me.

We have other people who have posted here who have had luck with the patch and with oxy. I wish none of us needed ANY drugs, but since some of us have few options if we want to live any semblance of a normal life, I guess I figure that we should all be allowed to take whatever works for us - physically, emotionally, and within our own ideas of what is good/bad for us.

I hope you find that point for yourself and soon.

Oh, just had a thought. I've known people who have spent over a year trying to get off the Mirapex. For me, it was harder than stopping smoking, I think.

Well, this is a LOT harder than I thought it would be. Last night, I didn't take any Mirapex (the first time I'd skipped a dose in about 4 years) and it was horrible. My two Vicodin tabs worked well for about an hour and then the floodgates burst open. I spent most of the night listening to CD's through headphones and kind of swaying to the music to relieve the crawlies. Got about two hours sleep.

Bjorn