Mirapex no longer doing the trick

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dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Mirapex no longer doing the trick

Post by dgarmaise »

Hi, all. I have been taking mirapex for several years. I have found that as time goes on, I need to increase the dose. I started at 0.125mg and quickly moved up to 0.25mg. I was able to stay at that dose for some months, but then found that I needed 0.375mg and then 0.5mg and then 0.625mg. It seems to me that while I felt I needed the higher dose, pradoxically it seemed to make it worse. Maybe what was happening was increased augmentation? I assume that augmentation would be worse at the higher doses, but I haven't actually read that anywhere. Anyway, about a year ago, I took a short drug holiday (a few days), and was able to resume mirapex at 0.25mg and it was effective for several months at that dose. Now, once again, I am up at 0.625mg. I am trying t take another drug holiday, but for some reason it seems a lot tougher to do this time around. I tried one night with nothing (but also took an anti-spastic medicine which, I think, just made things worse). I went back on mirapex the next night at 0.375mg, but I have had a terrible time sleeping; I am groggy from lack of seep all day; and I can't nap during the day because of augmentation. Not a lot of fun. I tried switching to requip a few years back, but it produce augmentation as soon as I switched. I have tried neurontin and another anti-convulsant, and did not enjoy the experience. Questions: Has anyone had any luck switching from mirapex to another dopamine agonist? Is there anything else I can take short term while I take a holiday from mirapex?
David

ViewsAskew
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Post by ViewsAskew »

Hi David,

I am sorry you're going through this. Augmentation often simply feels like needing higher doses to relieve the RLS. If you were to stop it at the time, you'd realize the RLS was stronger, but since you're still taking it, it just seems like you need more drug to cover the RLS, not that it's worse. It doesn't have to start earlier in the day, it can simply be stronger.

But, as you've now noticed, it eventually can get very nasty and start earlier, too, along with being stronger. I also was able to reduce my dose as you did, but had the same thing happen as you did.

The only thing that can really help you while you take a holiday is an opioid. You could do it without one, but you'd likely not be able to work or function. It's pretty nasty for most of us unless we have some opioid help.

In a few weeks (it can take a few days to several weeks for the excessive symptoms to stop), you can then see how bad the RLS is and what your options are. You can try to go back to Mirapex, but most of us find that once we've had trouble twice, there seems to be no going back. You may be different.

You can try Requip, but my experience has been that once you are strongly augmented, no dopamine agonist helps. That is just my experience, however. I only know of a couple other people who've tried it and it didn't work for them, either, but three or four of us do not make a trend! Given that you had difficulty with it before, I'd say it's unlikely it would be helpful now, but it may be worth trying it once you have had a few weeks off of the Mirapex.

Good luck. Let us know what you decide to do and how you're doing.
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.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Post by dgarmaise »

Thanks, Ann. After a few awful days at 0.375mg of Mirapex, taken two hours before bedtime,I made two changes: (1) I took part of the dose a little earlier, and (2) I upped the dose a little. I took 0.125mg at about 5pm, and then took 0.375mg two hours before bedtime. That worked very well the first night. I'll see how the next few days go. If I can stay stable on that for a few days, I will do so. Then, I may try to gradually lower the dose. I see my doctor in 8-9 days; I will ask about the opioids. Ann, are you saying that some/many/most people who have trouble twice with a dopamine agonist are forced to swich to another class of drugs? If yes, would that be anti-convulsants? It seems to me from my research that there isn't a whole lot out there for those needing daily medication, aside from DAa and anti-convulsants. Personally, I have had no luck at all with the latter.
David

ViewsAskew
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Post by ViewsAskew »

David, have you seen the Mayo Clinic Algorithm? You can find a copy of it by following the link in my signature. It provides the background for most of our recommendations here.

There are four classes of meds that can be used, as shown in the algorithm. The algorithm doesn't specify which class you should try in case the dopamine agonists (DAs) fail. They offer any of the three.

Most doctors, however, try either the antiseizure or the benzo group next. I am a bit prickly about the benzos. Doctors seem to love Klonopin and I don't get it. The half life is extremely long, meaning that many people are just too tired the next day. Also, unlike the anti-seizure drugs, strong physical dependence is likely for about 50% of those who try it, so that if it doesn't work or you need to stop it for some reason, it can be very hard. Last, there aren't enough studies showing its effectiveness, so it may not be as effective as some other options.

The last group is opioids. Most doctors save this for last. Most patients are happy to do that, though some of us have already figured out that they work (say from a root canal or other surgery for which we took an opioid and obtained relief from the RLS, too).

There isn't a right or wrong approach. A lot depends simply on what the doctor prefers or likes or has seen work for others.

If you try a benzo, Dr Buchfurer isn't enamored of them that much based on his writings, and suggests that people try something like Restoril instead of Klonopin. Also, if you try a benzo and are at all concerned you won't want to take it forever, drug holidays are a good idea. You can alternate it with an opioid, for example, getting dependent on neither.

Some doctors will go to the opioid group before the other two groups and prescribe Ultram (tramadol). It works enough differently that some doctors aren't as concerned about it causing dependence or addiction issues.

Most doctors freak out if you ask about opioids! Not all, but many. It depends on their perspective and what they've seen. Some will not ever prescribe them. Others do it cautiously, but only after the other categories have been exhausted.
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.

Sojourner
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Location: USA

Post by Sojourner »

d, I could not help but notice your location, Thailand. Just curious about that and how RLS is perceived and treatment there. If you can, could you tell us a little more about that. I'm glad you got some relief with the changes you made. Tinkering is often necessary and many docs will give you some leeway to do that and often suggest what you have done. Just keep them in the loop. As Ann and Zach alluded to, there is a "recommended" treatment sequence (Mayo Clinic Algorithm) for RLS. Sometime, a combo of meds rather than one med can be very helpful. I myself use neurontin and vicodin. Anyway, welcome, and best of luck. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Johnny2
Posts: 29
Joined: Sun Jan 18, 2009 7:01 am
Location: michigan

Post by Johnny2 »

Hi David, I failed 2 da s and my doctor switched me to norco, which
worked, but I get 24 7 symptoms so I had to switch to around the clock
therapy, an opiate is hard to beat for treating night time symptoms.
Is it nap time yet ?

davidgarmaise
Posts: 1
Joined: Sat Jun 13, 2009 5:46 pm
Location: Pattaya, Thailand

back again

Post by davidgarmaise »

Hi, all. I am the same guy as "dgarmaise" (who posted earlier). I had to create a new profile to get back on here! I tried to change the email address on my "dgarmaise" profile because it was outdated and, in the process, I seem to have gotten locked out. I got a message saying that my profile was now inactive and that I would get an email message telling me how to re-activate it, but I never did. And so I couldn't log in. Ann, could you (or someone) send a note to whoever can fix this? I'd rather be "dgarmaise" again, at which point I'd like to respond to a couple of posts! Thanks. David.
David

SquirmingSusan
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Post by SquirmingSusan »

I reactivated the "dgarmaise" user name. If you'd like to change the email in the profile and the system gives you trouble, just email one of the mods and we'll change it for you.
Susan

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Post by dgarmaise »

Thanks, Susan. Here I am, back again. I'd like to respond to a few posts. But first, an update: The changes I made to my dosage, described in an earlier post, are still helping. For the moment, I sleeping ok, though I kind of feel that I am living on borrowed time, i.e., that my legs are just barely under control. I'd like to cut down on my dose, but am not sure I can. Ann, I am familiar with the algorithm and the four classes of drugs. It so happens that I was on clonazepan for several years and have only recently managed to wean myself off (at GREAT discomfort). From my research, I believe that long-term use of benzos render them ineffective and an cause unwanted side effects. I believe that benzos are probably useful to treat RLS only if used for short periods or intermittently. I also get the impression that by themselves, they are probably not all that helpful for most people. I would really rather not go back on the benzos! As for the anti-convulsants, I tried Gabapentin (Neurontin) and had a very unpleasant time (dizziness, weight gain). I also tried depakine (depakene) without much luck. But I am certainly willing to consider other drugs in this class. Concerning the opioids, I need to learn more about their use. Perhaps they would help me take a drug holiday from Mirapex. But if many doctors are reluctant to prescribe them, I expect that the doctors in Thailand will be especially reluctant. There is a very strong anti-drug (i.e., recreational drugs) mentality in this country and I am sure it affects opioid prescription. Sojourner, I am not sure I have been in Thailand long enough to generalise about how RLS is perceived and treated here. Also, I don't speak Thai (yet) and so can't have conversations about this with the average Thai person. There are private hospitals here that provide very good medical care, much of it for Westerners living here or visiting. I have seen two doctors, neurologists, about RLS. I can't say that either one seems particularly knowledgeable about RLS, but then again I did not find that my doctor in Ottawa, Canada was that great either. Finally, with respect to opioids: How do people avoid becoming dependent? Does staying on a low dose help?
David

ViewsAskew
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Post by ViewsAskew »

I'm not sure you can avoid dependence. Some of us seem to have an easier time that others.

Now, I will say that one of the doctors in the RLS field suggests that he has had no problems with his patients taking methadone ONCE a day. But, people here have taken it only once a day and had difficulty stopping it. So. I guess maybe how we define difficulty is part of it? Not sure.

I have no doubt I'm dependent. It seems to happen easily to me. If I cut back my dose a couple of days in a row and supplement with something else (like Mirapex), by day three my RLS is MUCH worse. That seems to be a common side effect of stopping opioids. Actually, not much different from stopping a dopamine agaonist!

You could use an opioid to take holidays from the Mirapex. That could effectively keep your Mirapex dose lower. But, as you said, this could be tough in Thailand if there is a strong effort to curtail addiction/illegal drug use.

Per the other drugs in the anti-seizure class, it seems that they seem to be more effective for people who have pain than for people who so not.

It sounds like you only really have two options: try a switch to Requip, which does work for some, but not others; or try an opioid, first to take a break from Mirapex. If you go back to Mirapex and you can keep the dose low for awhile, switch back to the opioid as soon as you start having problems with the Mirapex. If at any point the Mirapex requires a higher dose as soon as you start again, it's possible that it just isn't going to work for you any longer.
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.

Neco
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Post by Neco »

Dependence is unavoided - it is a medical side effect. Once you continually introduce a substance to your body, you bio-chemically adjust to its presence. Dependence is what causes withdrawal.

Avoiding addiction is the real thing you need to watch out for. Addiction is a psychological process, and it can start with "just one more, for today" and end with "I need more, I need more, NOW".

Dependence is gonna happen whether you take painkillers, or drink caffeine infused soda all day.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

To taper or not to taper

Post by dgarmaise »

Hi, again. I am trying to take a week-long holiday from Mirapex. I have some Tylenol 3 with codeine, which is the closest I could get to pure codeine from my doctor. There sees to be a difference of opinion (on the internet) concerning whether one can or should discontinue the Mirapex abruptly. I would like to hear about the experiences of people on this forum. I have been taking 0.5mg of Mirapex.
David

SquirmingSusan
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Post by SquirmingSusan »

It seems to me that the only problem with discontinuing the Mirapex abruptly is that the RLS tends to go crazy for a while, and opioids are needed to help you through that time. It sounds like you have that covered.
Susan

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Post by dgarmaise »

Thanks, Susan. Problem is: the opiates didn't work the first night. Let me backtrack: Saturday night/Sunday morning, after a bad night, before which I had taken 0.5mg of Mirapex, at 6am I took a Tylenol 3 and slept wonderfully until 10 am. Hadn't slept in in eons. Sunday night, I took no Mirapex, but took one Tylenol 3. Could not sleep as my legs were not under control. Took another half Tylenol 3; no change. Around 6am, took another half Tylenol 3; no change. Sigh!
David

Johnny2
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Joined: Sun Jan 18, 2009 7:01 am
Location: michigan

Post by Johnny2 »

I would talk with your doctor about trying a larger dose of T3 or trying another opiate. something a little stronger, it sounds like your dose of codeine is pretty low, probably not enough to control moderate/severe case of RLS.Especially while experiencing rebound from cutting out the mirapex.Also just a something to note, if you are taking an antidepressant
(ssri) it can render the codeine useless as it blocks the transformation
of codeine to morphine in the body.
Is it nap time yet ?

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