Quitting Mirapex - Tell me about it ----GOOD NEWS

[Kimberly]

Hi everyone.

I've had RLS/PLMS for 30 years and have been on a combination of Neurontin (900 mg at 4pm/8pm) and Mirapex (.5 mg at 4pm/8pm) for 9 years. I've long been complaining about sleep walking, sleep eating (binge), augmentation/rebounding (24/7 now), and have begun to fall asleep without waring during daily routine, including conversing on phone and driving. While the literature does not specifiy smoking addiction, I think Mirapex is also making it dang near impossible to quit.

Anyway, with my docs ok, I am going off and would like to know, especially for those who've taken it as long as I have, what your experienced. How long did it take and did you have any adverse side effect/withdrawal.

Thanks, Kimberly

[ViewsAskew]

Hi Kimberly, boy, I remember exactly what it was like when Mirapex had taken control of my life - the 24/7 RLS, anxiety, crying jags, no sleep, constant binging, etc. Horrible.

And, I remember trying to quit it twice and thinking I'd rather DIE than go through that! It's the hardest thing I've ever tried - smoking was easier.

The only thing that got me through was a strong opioid. We tried a mild one first - didn't work. Then a moderate one - I was allergic. Then a strong one. It worked.

That's what the common treatment guidelines by most RLS specialists I've read all say: stop the DA and use a moderate or strong opioid to get you through it. It will take awhile - they used to say 3-5 days, but for some it takes several weeks. To help your doctor, either of the most current RLS books that Dr's Hening and Buchfurer wrote (one with Lee and one with Kushida) explain how to get through this time using opioids.

You'll know when it gets better.

[Kimberly]

Oh gosh Ann, your 24/7 symptoms on Mirapex sound like mine. Can you tell me how much you were taking and for how long?

Also, when you tried to quit, what kind of symptoms (withdrawl?) did you have that required an opiod? Did you wean off it? How long did it take? Whats the 'DA'?

Also, what did you take for your RLS in the meantime. Iknow my neurontin alone is going to take care of the problem and so my RLS won't be being treated. Nothing else, including Requip has ever worked for me.

I've moved and I'm looking for a new doc, but my timing really, really stinks. Yesterday I went to a 'new patient' visit to discuss getting off the Mirapex. I swear, he barely glanced at my chart, and good grief Ann, he wrote me a script for 2.5 mg to wean me off a .50 mg tablet. The pharmacy caught the mistake (no such thing as a 2.5 tablet, besides which, that's like 4 times plus the dose!!). Had there been such a dose, I'd be in deep doo doo right now. I've been just about everywhere I can go to here for help, including Cleveland Clinic. They just haven't seen such a severe case. The doc yesterday recommended Mayo or Johns Hopkins when he realized he wasn't going to be of much help. Ya know, they hate it when you know more about your condition than they do I've got 30 years invested in this dang illness, I ought to know a little more than they

Sorry for all the questions, I really appreciate your reply!
LOL....I guess this isn't a good time to try and quit smoking too ;0

Kimberly

[ViewsAskew]

Here's what I know about augmentation - that's when the drug you are taking causes your symptoms to become more severe to start earlier in the day.

Terms - DA stands for dopamine agonist. Simply (and not probably very scientific), an agonist is something that increases something else. Requip and Mirapex are both doapmine agonists, so they are increasing dopamine. Any dopamine agonist can cause augmentation. Sinemet is not a DA, though it does increase dopamine so can (and almost always does) cause augmentation. So far, these are the only drugs known to cause this odd problem, with the exception of a few cases of augmentation caused by tramadol.

Hundreds of us have had this happen. It's pretty common, actually. No one is keeping track, so no one really knows how often and estimates vary from 10% for Requip up to 90% for Sinemet. It can happen subtly, so you increase your dose over time, or it can side-swipe you. When it's subtle, the docs sometimes just increase your dose over time. Sometimes that meant that initially you took it once at 9 PM and over a year or a few years you were taking it 24/7.

OK, now that I hope I made that clearer than mud, onto more about augmentation and what to do about it.

When it gets severe, as yours sounds like it is (and mine was), you need to stop the drug. Cold-turkey will not hurt you physically (there is no dependence) and is probably better in the sense that stepping down doesn't help diminish the augmentation any more quickly.

But, when you stop the drug, the RLS gets worse. Yep, you read that correctly - it gets worse. That's the problem and why most of us can't do it without another drug to help us. If the augmentation just gradually or quickly reversed, you'd stop the DA and that would be end of story. But the RLS can get vicious (and often does). Take whatever level of RLS you have and multiply it - for me, it was like tripled and I already had it 24/7! It's totally crazy making. No sleep, no rest, no sitting, no stopping. For me, the limb movements got horrible, too. I would just jerk intermittently. I'd be standing and rocking and my leg would shoot out from under me.

Since the RLS gets worse, most of us just cannot tolerate stopping it without getting help. Neurontin has not been shown to help. In fact, the only thing that has shown to help are opioids. They allow people to have some rest and sleep and stop the crazy RLS enough so that you can tolerate it. As I said in my first post, this is the treatment that the doctors all recommend. Or going crazy! So, the opioid is what's controlling your RLS - both your regular and your increased RLS!

Mild opiods don't tend to help. And, sometimes moderate ones don't either. Dr Buchfurer immediately pulls out the big guns and gives his patients methadone without even trying the other ones. But, finding a doc to do that can be hard, hard, hard. It took me 6 months of being in the situation you are in before I could find one who would help me.

This period of hell lasts from a few days to several weeks. Then it finally starts to calm down. That's when you can start to look for new treatment. My doc decided that since the methadone was working that he'd just leave me on it. That was awhile back 2 or 3 years now - I'm not quite sure. I think it's over 3...

Hope that helps. Oh, I wasn't taking much Mirapex at all. I augmented taking .125 mg. I augmented in one week of taking it. But, my doc just kept giving me more, earlier in the day. At the height I was taking .75 mg. I stepped myself down to .375. Then to .125 again. The whole time I was on it was about 18 months.

[Kimberly]

Thanks so much for your input Ann....it's going to be very helpful to me and I look forward to re=reading it all when I can actually focus. I may have to go back on my full dose until i can find a doc to assist.

If I were chronicoling my End to Mirapex... I would tell you that last night was a hoot, except that , while slep walking, my son found me spitting spackling paste in the sink....I'd tried to put sit on crackers for snack. Fortunately nothing left threatening happened.

Shortly thereafter, my body began to look like I was posessed by the devil himself. Stops, for the most part, when I stand and walk....but I can't sit down but for a few second, even this morning....and I can't stand and walk for ever!!!!

aggghhhh.

This too shall pass, this too shall pass.

sorry for the misspelligs....couldn't find the spell check.

[SquirmingSusan]

Shortly thereafter, my body began to look like I was posessed by the devil himself. Stops, for the most part, when I stand and walk....but I can't sit down but for a few second, even this morning....and I can't stand and walk for ever!!!!

aggghhhh.

This too shall pass, this too shall pass.

sorry for the misspelligs....couldn't find the spell check.

OMG! Spackling paste on crackers! Kimberly, I so remember that "possessed" thing after I quit Requip. Fortunately, I had read in this forum that painkillers were needed to get past it, and my dh had enough to hold me over until I saw my sleep doctor the next week.

Maybe you can go to the ER?

I strongly believe that doctors should not be allowed to prescribe the DAs unless they know what to do if augmentation occurs, and are willing to prescribe the painkillers until things settle down. They just have no right to get you into that mess, and then not help you.

OK, that's my rant for today. Please do try to get some help with that; it's the most miserable thing ever.

[ViewsAskew]

Oh my! This stuff can be so helpful...and so vile. Like Susan, I remember the horrid experiences of that time. Actually, not so well, lol. I think I've sort of drowned them out because it's too painful to remember

I'm with Susan, NO one should be able to prescribe it unless they know how and are willing to handle augmentation. Period.

[Kimberly]

I want to thank you both for your replies to my questions and I want to update you with some good news. Tonight is the 5th night, in over 10 years, I have had absolutely NO RLS and NO PLMW and I have been able to actually take naps during the day, as needed. I've had not even the slightest twinge!!

Is it a fluke? Maybe...Has this happened to others and will it come back? Probably....But it has been absolute heaven to lie my head down on a pillow and fall right to sleep like normal people do, and I am soooo grateful for the 'miracle' I am experiencing and for every single day it lasts.

October 3, I quit taking Mirapex, cold turkey. I also spent 1 week weaning off a small dose of cymbalta rx'd for fibromyalgia. Only added 600 mg. extra of neurontin. And Yes, the RLS/PLMW got much worse, which I still don't understand. If mirapex was causing augmentation and rebound all these many years, you'd think the rls/plmw's would go back to 'normal' bad, but no....from October 3 until October 13, exactly 10 days, I swear I was possessed. I can think of no other way to describe it, except some visual combination of the worst case of tourettes along with parkinsons. I literally had to sit on the couch because I was afraid that the severe movement would cause my bed to fall off the risers. My son, thankfully, videotaped it.

0n October 14, it stopped. Just like that. Stopped. All of it. After 30 years, I'd forgotten what it feels like.

I'm knocking on wood all over the place, scared to change a thing about what I'm doing medicine wise (time and dosage) and almost afraid to tell anyone for fear it will return, but I just had to share;) Also struggling with wanting to strangle the Doc who prescribed Mirapex and did nothing but increase the dose even though I complained just weeks into it that pLMW had spread to arms & trunk and begun having tics. For that matter, may as well strangle the other 3 Neuros who, knowing the severity of my symptoms, kept refilling & increasing the Mirapex. Including the best movement specialist at Ohio State. Oh, and the last Doc who, on my first (and only) visit wrote the script for Mirapex at 5 times the dosage and now won't release my file unless i pay him for copies. agggghhh. I sure know how to pick 'em, don't I? LOL

Kimberly

EDIT TO ADD: Forgot to say...also...no more episodes of 'narcolepsy' during the day (talking on phone, driving, or otherwise), no more sleep walking, no more sleep eating (paint, spackling paste on crackers, or any other strange 'snacks'), no more trying to light my cigarettes with knives (yes, I did that and then tried to return the knife to the butcher block by going outside and sticking it between the deck boards , and all desire to binge eat, especially at night (had gained @60 plus lbs over 10 yrs.) has stopped!! knock, knock, knocking on wood

[ViewsAskew]

October 3, I quit taking Mirapex, cold turkey. I also spent 1 week weaning off a small dose of cymbalta rx'd for fibromyalgia. Only added 600 mg. extra of neurontin. And Yes, the RLS/PLMW got much worse, which I still don't understand.

First, that is so excellent! It's hard not to wonder...but I like the idea of not thinking about it at all and just living your life happily...until it changes.

I just wanted to offer a bit of an explanation regarding augmentation. When you stop the dopamine drug when you have augmented, the RLS almost always goes berserk. I'm sure someone has some ideas why and it's probably related to chemistry and receptors, but it's awful. It does seem that it should stop right away, but this crazy time typically lasts from 3 days to several weeks. That's why a lot of doctors now feel that opioids are the only way to handle this period - without them, you can feel like it's getting worse, so you go back on the dopamine drug.

[Kimberly]

[/quote]

First, that is so excellent! It's hard not to wonder...but I like the idea of not thinking about it at all and just living your life happily...until it changes.

I just wanted to offer a bit of an explanation regarding augmentation. When you stop the dopamine drug when you have augmented, the RLS almost always goes berserk. I'm sure someone has some ideas why and it's probably related to chemistry and receptors, but it's awful. It does seem that it should stop right away, but this crazy time typically lasts from 3 days to several weeks. That's why a lot of doctors now feel that opioids are the only way to handle this period - without them, you can feel like it's getting worse, so you go back on the dopamine drug.[/quote]

Thanks Ann. I too like the idea of just enjoying it while it lasts and believe me, I'm doing everything in my power NOT to think about it during the time I would normally call "torture" time. Have you ever heard of anyone have it completely stop like this, as if the conditions were cured? Something else I can't help but wondering is why it stopped so completely and didn't go back to just normal rls/plmw. Aside from adding more neurontin, I changed the time I take my morning meds and am taking them with my first dose of neurontin at 4pm. Dang, I keep wondering if the combo of one of my morning meds along with the neurontin caused the RLS/PLMW to disappear after 10 years.

[Sojourner]

K, I think that "remissions" can occur and have been experienced by some on this board. I currently am in a bit of a happy time right now--since about June. Not completely or totally but something, for the good, has changed these past several months with respect to rls/plmd. I also take neurontin. Now, if I could only sleep. Anyway, it wish you a long and happy voyage.

Best wishes,

M.

[cornelia]

I think it's wonderful and I hope it will stay like this forever. I think that if this happened to me, I should need help with learning to live without the monster (LOL)!

Hmmm, I think it helped too that you stopped taking Cymbalta.

Corrie

[Polar Bear]

Kimberley, it must feel like a miracle.
I wish we could go to a 'miracle shop' ......

[Kimberly]

Thank you all for the explanations, concerns and well wishes. I sincerely appreciate all you have to say and am grateful for the opportunity to learn from you. It has been 11 nights. Tonight is the 12th. Today I had a bit of plmw when I tried to rest and my fingers are crossed that it won't occur tonight, although it is almost nine and nothing yet.

It truly does feel like a miracle. But how horribly evil 'twil be to have it return. So much, in fact, that each night I just pretend I never had it, don't think about what it felt like, nothing, for fear of it's return. That just might be the depression out of control.

I realize too how grateful I am for this site and the opportunity to share the good and bad experiences while gaining insight from those more knowledgeable. I know now it is sooo important to know the side affects of medicines I'm taking and to make it very clear to the docs when I know something isn't right. 10 years, a decade, aggghhh...far too long.

Sheesh, enough of that..... I haven't had a social life at night in forever with this dang thing.

If I can tolerate my fibromyalgia pain and foot neuropathy, I just may have to get dolled up and go do some real dancin' one night!! LOL

By the way....is there somewhere I can learn to reduce the size of a photo so that I can use it as an avatar. I use to know how, but Lord knows where the knowledge went

My very best to all of you.
Kimberly

[SquirmingSusan]

Hi Kimberly, It's so great to hear that you're feeling good with no RLS these days! I hope that continues.

As for avatars - you can resize a picture to avatar size right on photobucket, and it's easy. You'll probably need to have an online photo hosting account anyway to link your avatar from, because it just doesn't seem to work right on this site to upload it and store it here. Accounts on Photobucket are free, but there are lots of other photo hosting sites out there. And I think they all let you resize. There's a whole thread in the "non-RLS" section of the message board about avatars and how to make them work.