Mirapex and augmentation

[JimmyLegs44]

I am 42 years old and I've had RLS for about 14 years. I have been taking .25 MG Mirapex at 8 p.m. for about 7 years, and it worked wonderfully at first. When I first had RLS, I would only get restless legs during sleep, never during the day. However, the symptons started beginning earlier and earlier, and now I often get restless legs as early as noon, and they sometimes last, off an on, the rest of the day. I've read the Mayo Clinic Algorithm, and it appears this is likely the result of augmentation. I believe the next step would be to either switch to another drug (I've tried Requip for a short period, and augmented after just a week or two) or take an additional dose of Mirapex earlier in the day. My question is this....since it is presumably the Mirapex causing the earlier onset, does that mean a switch to another drug may possibly mean my daytime RLS will disappear? I know I will find out sooner or later, but just wondering if anyone else had a similar experience.

[badnights]

I'm sure you'll get lots of replies to this because lots of us have had different versions of a very similar experience.

You're right about the earlier dose of Mirapex. It just pushes things back so you augment prior to your early dose. The idea is to have your latest dose last long enough to deal with the augmentation of your earliest dose.

Personally, I think augmentation is a sign that bodily systems are being abused and the drug that's causing it should be halted rather than increased, but I hasten to emphasize that's my opinion and it's based on almost nothing! So maybe people who are controlling augmentation with earlier doses are perfectly fine with that.

If you have concerns, it can't hurt to express them to your doc and see what s/he suggests. One possibility is to go on a strong opiod for the withdrawal (I hope your doc is aware that withdrawal from Mirapex for an RLSer consists of a week or two of intensified symptoms that can destroy quality of life?), then go on an anti-convulsant in combination with a low dose of Mirapex. Apparently some people have done this, and they can keep the Mirapex dose low enough to avoid augmentation because it's combined with an anti-convulsant. If you want to avoid Mirapex and Requip completely, you could an anti-convulsant with codeine, a low-potency opiod.

Or skip all the time-consuming, life-destroying experimenation and go straight to a strong opiod because at least you know it will work. But probably your doc will prefer to do it a different way

[ViewsAskew]

I see to recall that some doctors feel the following:

1. For the first augmentation that is mild, an increase is fine. Some people can stay here for quite awhile before another increase

2. Once the augmentation has already been treated with one earlier does, you're better off stopping it because it's never going to stop - you'll just keep adding doses until it's 24/7.

Like Beth, I think that it's important to stop the med entirely when it starts happening.

For the vast majority of us, when you stop the offending drug the symptoms go back to their prior level. A few of us have had a different situation, though the doctors say it isn't because of the medication. I'd beg to differ, but they aren't listening to me!

There is a caveat. Your RLS could simply be getting worse and it might not be augmentation. How long of a period did it take to start earlier? The longer the period, the more potential that it is getting worse on its own. I imagine that's not something you want to have happen!

[JimmyLegs44]

How long of a period did it take to start earlier?

Thanks for the replies. I first noticed the earlier onset last summer. When I met with my GP, we discussed the possibility of an upper-hamstring injury that I sustained causing a flare-up in my RLS. However, once the injury healed, the daytime RLS continued, leading me to believe it was augmentation. Late last year, I switched to Requip, which worked for several weeks, but then caused the worst RLS I ever had. Went back to Mirapex, and almost instantly the RLS disappeared, things were good for several months, but now the daytime RLS is back...

I tend to agree with both of you that it may be time to say goodbye to Mirapex. It's especially frustrating when you pay so much for the drug and it doesn't do what it's supposed to.

I also hope that it is simply augmentation and not a worsening of my RLS. Time will tell. I am meeting with my GP next week.

[ViewsAskew]

Slow onset - over a period of year or more - is usually thought to be general worsening.

Fast onset - in a few months - is often thought to be augmentation.

But, I can see how they'd be hard to tell apart in many cases, particularly mild augmentation.

Good luck - hope your doc is informed and helpful.

[JimmyLegs44]

Well, I just met with my doctor. His recommendation was to add an earlier dose of Mirapex, so I will be at .25 MG's, twice a day. Hopefully that will help. At this point, I am not only augmenting but also rebounding from the Mirapex. Also, I am waking from the RLS several times per night. Not fun. Fall is always the worst season for my RLS, not sure why. Probably anxious about having to endure another long, cold MN winter!!

I believe the maximum recommended daily dose of Mirapex is 1.5 MG in divided doses. I will now be at .5 MG per day. If this doesn't work, do you continue to go up to the maximum before switching to another drug? I have my doubts about the effectiveness of Mirapex after augmentation has set in, but my doctor doesn't seem to share my concerns.

[badnights]

My (non-professional) opinion is not to raise it again if this doesn't work; move on to something else. I don't get to hear many happy stories about people adding a DA dose and then being OK for years, maybe just because they don't write here if it all turns out OK, but maybe because, as common sense tells you, the escalation just goes on and on. Plus you're rebounding, and adding another dose is not going to help that; I suspect your doc only prescribed that change because he didn't know what else to do (or didn't understand what was happening to you?)

Have you asked Dr. B for a professional opinion? A surprising number of doctors are willing to consider his responses, even if they've never heard of him, so it might help your doc decide what to do next if this new dosage doesn't work out. (Probably you know this already because you've been around for a while, but in case not, and for other readers who might be new, he's the physician affiliated with the Southern California RLS support group, and he answers emails from people with RLS;www.rlshelp.org)

Good luck! And if the extra dose works, tell us about it, if you can!

[JimmyLegs44]

Well, I took an additional dose yesterday for the first time - .125 MG. I think I'll ease into it; maybe just .125 MG will do the trick. It definitely helped with my evening RLS (8-10 pm). It was still there, but much less severe. I was actually able to sit down while watching TV for the first time in a month. BUT, I was also much more tired than normal during those hours, so I guess there is a trade-off. Also, I slept through the night for the first time in a month!!

I think I have my daytime RLS under control by limiting my caffeine intake.

I will continue to monitor and reply with results in a week or so.

[badnights]

Excellent! fingers crossed....

[fraujoolie]

From what I understand, once Mirapex causes augmentation, it's only a matter of time before it causes it again...
It can be tricky.

In my experience, I went from 0.125 mg of Mirapex 1x day, to 2x a day, to upping to the max dose. This was before I was in L.A., and switched to Dr. Buchfuhrer. He immediately took me off of the Mirapex and I detoxed with some heavy opiods. Once it was out of my system, we tried a few different combos of drugs, (opiods plus Lyrica) until I found something that was therapeutic and I could live with it.

Every body is different, so your milage may vary.

New to the board, and hope to have some good conversations here!
Julie

[JimmyLegs44]

I had my doubts, but the additional dose has pretty much eliminated my symptoms, at least for now. I've been taking .125 MG at 5-6 p.m. and my "normal" .25 MG around 8 p.m. Last night was night 15 with the add'l dose, and I have slept thru the night 14/15 of those nights (the only night I didn't was when I didn't take the add'l dose just to see what would happen). Prior to that, it was like 0/40 or something like that (can't remember it was so many in a row).

I really thought that with the severity of my daytime RLS and early evening RLS, and the fact that I was rebounding, that the additional dose would not work, but thankfully it has so far.

[ViewsAskew]

That's great news.

[badnights]

so far so good. Maybe now because you're posting I'll be able to say I know of a guy this worked for.

[Eternityroad]

When I started augmenting on ropinerole (generic Requip) I got it under control with Hydrococone, which I was taking in small doses for back pain. I shucked the Ropinerole and for awhile two tablets of Hydorcodone (7.5) at dinner did the trick but when symptoms began to return I added a half tablet of requip at bedtime on alternate nights. This seems to work for me, for now. Just today my doctor gave me a starter kit of Mirapex so now I have a new therapy to try. I am guardedly enthused because the same type of augmentation may occur with this new (to me) drug.

Point being I don't think from my experience that there is one neat cure. Wish there were. I think opioids are very helpful in controling the condition, but that is based on my experience. The fact that they can become habit-forming is a clear and present danger. It is why I restrict my dosage to two tablets per day at dinner.

Ken

[JimmyLegs44]

Just a quick update....the earlier dose of Mirapex is still working wonders (knock on wood!!). This is the longest stretch (8 months) with pretty much no symptoms that I can remember. I am still only taking the .125 MG at around 6:30 now, with the final dose of .25 MG around 8:00. I know historically for me fall is the worst for my RLS, but the last 2-3 years summer has been bad too, so I'm cautiously optimistic about the prospects of an RLS-free summer.