Mirapex, does it work?
Mirapex, does it work?
I got a px for Mirapex (.25mg) and been taking it about a week. I've had some slight improvement but nothing major. Still get pain in my legs later in the day. I take it at night and sleep ok and feel pretty good in the mornings. Should I ask to have my doc up the dosage so I can take two, one at night and one during the day? I also take xanax and that seems to help a bit as well.
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ViewsAskew
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See my post in your other post for more information. Welcome again.
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.
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.
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ViewsAskew
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It's true...sort of.
Mirapex or Requip work for a large percentage. But, they do NOT work for everyone, nor do they work forever. So, even if they do work, sometimes you have to move to another med.
And, sometimes they solve part of the problem, but not all of it.
Mirapex or Requip work for a large percentage. But, they do NOT work for everyone, nor do they work forever. So, even if they do work, sometimes you have to move to another med.
And, sometimes they solve part of the problem, but not all 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.
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.
It's true that Mirapex and Requip don't work for some people. Either they just plain don't work, or they can actually make it worse. When they made it worse they can cause augmentation, which is a vicious cycle of the symptoms appearing earlier in the day which can be relieved by taking more and more medicine each time in an attempt to control it. However it always reaches a point where it is impossible and you only make it worse by trying to add more medication. Some people have made claims of permanent augmentation that results in a permanent increase in their RLS, even after totally stopping the drug for a number of days or weeks/months.
Many of us here take opiates to control our RLS, and quite a few of us are on Methadone. We've actually seen the Methadone portion of our community slowly expand over time. When I first arrived I think maybe one or two people at most were on Methadone, now I think there may be as many as 5 or more of us in total, if not one or two more. Methadone patients usually end up climing a ladder that is brutally slow to get to that point, unless they luck out and have a doctor that actually suggests it early in treatment, but typically we have gone through every other medication before reaching Methadone, including weaker opiates.
We generally can't tolerate Requip or Mirapex, have had the unfortunate luck to be exposued to Sinemet which is THE DEVIL of RLS care and can cause rapid augmentation in more than 70% of the people who are mistakenly given it for daily treatment, and eventually reach a point where Codeine, Tramadol, Hydrocodone, or even Oxycodone aren't real efficient at controlling the RLS. They are good drugs by themselves and do provide relief, but they are only short acting opiates and are not well-suited to treating severe cases of RLS with 24/7 symptoms.
Some do have time released versions, Ultram E.R (tramadol), Oxycontin (Oxycodone), MS Contin (Morphine), etc that may also work. They last for about 12 hours or so ideally. Methadone is often a good candidate because it is very inexpensive and although it is not engineered for controlled release, can still provide between 12 - 24 hours of relief if you are on a sufficient dose and luck out.
Opiates are often recommended as a last option, Methadone in particular because it is very powerful and comes with its own can of worms and social stigmas. Many doctors are hard pressed to prescribe opiates at all and it can be a real fight to get them, and some people have been through more doctors than they have fingers on both hands. But its worth it in the end to get proper care and have someone listen to you.
Many of us here take opiates to control our RLS, and quite a few of us are on Methadone. We've actually seen the Methadone portion of our community slowly expand over time. When I first arrived I think maybe one or two people at most were on Methadone, now I think there may be as many as 5 or more of us in total, if not one or two more. Methadone patients usually end up climing a ladder that is brutally slow to get to that point, unless they luck out and have a doctor that actually suggests it early in treatment, but typically we have gone through every other medication before reaching Methadone, including weaker opiates.
We generally can't tolerate Requip or Mirapex, have had the unfortunate luck to be exposued to Sinemet which is THE DEVIL of RLS care and can cause rapid augmentation in more than 70% of the people who are mistakenly given it for daily treatment, and eventually reach a point where Codeine, Tramadol, Hydrocodone, or even Oxycodone aren't real efficient at controlling the RLS. They are good drugs by themselves and do provide relief, but they are only short acting opiates and are not well-suited to treating severe cases of RLS with 24/7 symptoms.
Some do have time released versions, Ultram E.R (tramadol), Oxycontin (Oxycodone), MS Contin (Morphine), etc that may also work. They last for about 12 hours or so ideally. Methadone is often a good candidate because it is very inexpensive and although it is not engineered for controlled release, can still provide between 12 - 24 hours of relief if you are on a sufficient dose and luck out.
Opiates are often recommended as a last option, Methadone in particular because it is very powerful and comes with its own can of worms and social stigmas. Many doctors are hard pressed to prescribe opiates at all and it can be a real fight to get them, and some people have been through more doctors than they have fingers on both hands. But its worth it in the end to get proper care and have someone listen to you.
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Metabolic wreck
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JM956 and Zach:
I guess I'm one of those people who climbed the Mirapex ladder. I started on it 6 or 8 years ago, and have had to gradually increase the dose. I'm taking .5mg to .75mg every 4 hours. I'm in the process of looking for an alternative. I tried Requip, but it didn't touch it. I'm thinking I'd like to try Neurontin; maybe something that's not a dopamine agonist will help.
But, yeah JM, you might need to increase the dose and/or frequency, but I thought it was great when I first started. I don't know what you're taking; it comes in several strengths. I think maybe I started with .25 mg; I dont' really remember (that's an effect of my MS)
Good luck!
The Wreck
I guess I'm one of those people who climbed the Mirapex ladder. I started on it 6 or 8 years ago, and have had to gradually increase the dose. I'm taking .5mg to .75mg every 4 hours. I'm in the process of looking for an alternative. I tried Requip, but it didn't touch it. I'm thinking I'd like to try Neurontin; maybe something that's not a dopamine agonist will help.
But, yeah JM, you might need to increase the dose and/or frequency, but I thought it was great when I first started. I don't know what you're taking; it comes in several strengths. I think maybe I started with .25 mg; I dont' really remember (that's an effect of my MS)
Good luck!
The Wreck
Every 4 hours? every day?
Good god that sounds like horrible augmentation. How long have you been on that kind of schedule? Is it saf eto assume you arrived at this dosing pattern because your symptoms kept showing up earlier and/or more severe?
Neurontin or Lyrica may help you, but I have a feeling you're going to have an absolutely horrible time trying to get off the Mirapex without some kind of opiate after that much medication every day. Many people can't even do it the first attempt without an opiate from what I have seen discussed.
Here's a link to the Mayo Clinic Algorithm for RLS.
http://www.mayoclinicproceedings.com/co ... l.pdf+html
You may find some helpful information in here, and your doctor might too.
Good god that sounds like horrible augmentation. How long have you been on that kind of schedule? Is it saf eto assume you arrived at this dosing pattern because your symptoms kept showing up earlier and/or more severe?
Neurontin or Lyrica may help you, but I have a feeling you're going to have an absolutely horrible time trying to get off the Mirapex without some kind of opiate after that much medication every day. Many people can't even do it the first attempt without an opiate from what I have seen discussed.
Here's a link to the Mayo Clinic Algorithm for RLS.
http://www.mayoclinicproceedings.com/co ... l.pdf+html
You may find some helpful information in here, and your doctor might too.
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Metabolic wreck
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- Location: Arkansas
Mirapex
Yep, Zach--every day. This has been the result of gradual dose increases--usually it helps for awhile, and then gradually gets worse, and the dose gets upped again.
The neurologist that I see (an MS specialist) has been hesitant to change the medication entirely, because he says, we know that I respond to dopamine agonists, and I may not respond to other types.
Anyway, thanks a lot for the link to Mayo--any scientific data I can get will be a big help towards creating a plan.
(So far, the best solution I've found is sedation!) The odd thing is, it doesn't keep me from going to sleep at night. It drives me crazy during the day. Go figure!
The wreck
The neurologist that I see (an MS specialist) has been hesitant to change the medication entirely, because he says, we know that I respond to dopamine agonists, and I may not respond to other types.
Anyway, thanks a lot for the link to Mayo--any scientific data I can get will be a big help towards creating a plan.
(So far, the best solution I've found is sedation!) The odd thing is, it doesn't keep me from going to sleep at night. It drives me crazy during the day. Go figure!
The wreck
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ViewsAskew
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MW - I have to agree with Zach. This is most assuredly augmentation.
Please go to the "sticky" post in this section and read about augmentation. It's VERY important to stop this drug, at least until your body resets.
Please go to the "sticky" post in this section and read about augmentation. It's VERY important to stop this drug, at least until your body resets.
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.
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.
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Metabolic wreck
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- Joined: Sat Jan 24, 2009 4:31 am
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augmentation
Thanks Ann. I believe you and zach that it's augmentation; I just have to figure out how best to proceed.
On an amusing side note--I decided that I wanted to see a clear definition for augmentation, so I did a search. And came up with dozens of sites related to breast and penis augmentation. Somehow, I don't think that's what you are referring to!
I do appreciate the input. My neurologist is supposed to be back in town tomorrow, so I'll try to confer with him and see what we can come up with. This is getting old!.
I had to survive about 14 hours in a car over Christmas weekend, and ended up taking 1/2 dose every 2 hours. It helped, but I slept a lot.
The Wreck
On an amusing side note--I decided that I wanted to see a clear definition for augmentation, so I did a search. And came up with dozens of sites related to breast and penis augmentation. Somehow, I don't think that's what you are referring to!
I do appreciate the input. My neurologist is supposed to be back in town tomorrow, so I'll try to confer with him and see what we can come up with. This is getting old!.
I had to survive about 14 hours in a car over Christmas weekend, and ended up taking 1/2 dose every 2 hours. It helped, but I slept a lot.
The Wreck
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mackjergens
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RLS Augmentation
I copied/pasted this info from
http://www.health.com/health/condition- ... 85,00.html There is more info available on this site.
______________________________________________________
Restless Legs Medication and Augmentation: What You Need to Know if Your Drug Stops Working
Email Print Share
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12
Discuss the possibility of augmentation with your doctor, and consider options for further treatment.
If you take medication to control restless legs syndrome (RLS), you may at some point experience augmentation, the worsening of symptoms as your body becomes tolerant to the drug.
RLS seems to be caused, in part, by a shortage of dopamine in the brain, so physicians often prescribe dopamine agonists such as ropinirole (Requip) and pramipexole (Mirapex) to relieve symptoms quickly and effectively. Although the medications are not without side effects, many patients can take them for years and experience significant improvement.
However, for an estimated 10% to 15% of patients, these same medications may stop working after years or even months. In some cases, they even backfire, and RLS symptoms return with a vengeance—occurring earlier in the day, more frequently, or more severely than before treatment. (Levodopa, an older drug that also acts on dopamine levels, is even more apt to provoke augmentation, and doctors therefore tend to prescribe it only at low doses and for mild cases of RLS.)
More about RLS
15 Questions With an RLS Expert
Medication for Restless Legs Syndrome
The RLS Controversy
In 2006, researchers at the University of Rochester published an article that examined the cases of two older women who, for more than six and seven years, respectively, took numerous medications (including dopamine agonists) for their RLS symptoms.
When the study was released, the lead author remarked on the drugs’ tendency to “turn traitor” and “boomerang” after a limited time, just as painkillers and some headache medications can do if used for an extended period. Increasing the dosage or taking the medication earlier in the evening may help combat mild augmentation, but if it becomes severe, more of the same drug will only make things worse.
________________________________________________________
P.S.
You can find alot more info about RLS and augmention just by typing into search engine RLS Augmention I just thought the one above explained what augmentation in rls was. Its always best to educate yourself in all the pros/cons of rls, as you will find out many many Drs know very little about RLS. So to protect yourself, please read as much as you possibly can about rls. print out the list of meds used to treat rls and the list of meds that you can NOT use. also there is a list of foods, that can make rls worse. Sooooo many things to know about rls. Always keep the list of meds known to make rls worse with you at all times, so when a Dr prescribes a med for another condition you can ck to see if its on the do not use med list for rls. You can end up saving yourself alot of misery.
www.rlshelp.org is one of what I think is the best site for info about rls.
good luck and keep us posted as to what is going on with you.
http://www.health.com/health/condition- ... 85,00.html There is more info available on this site.
______________________________________________________
Restless Legs Medication and Augmentation: What You Need to Know if Your Drug Stops Working
Email Print Share
--------------------------------------------------------------------------------
12
Discuss the possibility of augmentation with your doctor, and consider options for further treatment.
If you take medication to control restless legs syndrome (RLS), you may at some point experience augmentation, the worsening of symptoms as your body becomes tolerant to the drug.
RLS seems to be caused, in part, by a shortage of dopamine in the brain, so physicians often prescribe dopamine agonists such as ropinirole (Requip) and pramipexole (Mirapex) to relieve symptoms quickly and effectively. Although the medications are not without side effects, many patients can take them for years and experience significant improvement.
However, for an estimated 10% to 15% of patients, these same medications may stop working after years or even months. In some cases, they even backfire, and RLS symptoms return with a vengeance—occurring earlier in the day, more frequently, or more severely than before treatment. (Levodopa, an older drug that also acts on dopamine levels, is even more apt to provoke augmentation, and doctors therefore tend to prescribe it only at low doses and for mild cases of RLS.)
More about RLS
15 Questions With an RLS Expert
Medication for Restless Legs Syndrome
The RLS Controversy
In 2006, researchers at the University of Rochester published an article that examined the cases of two older women who, for more than six and seven years, respectively, took numerous medications (including dopamine agonists) for their RLS symptoms.
When the study was released, the lead author remarked on the drugs’ tendency to “turn traitor” and “boomerang” after a limited time, just as painkillers and some headache medications can do if used for an extended period. Increasing the dosage or taking the medication earlier in the evening may help combat mild augmentation, but if it becomes severe, more of the same drug will only make things worse.
________________________________________________________
P.S.
You can find alot more info about RLS and augmention just by typing into search engine RLS Augmention I just thought the one above explained what augmentation in rls was. Its always best to educate yourself in all the pros/cons of rls, as you will find out many many Drs know very little about RLS. So to protect yourself, please read as much as you possibly can about rls. print out the list of meds used to treat rls and the list of meds that you can NOT use. also there is a list of foods, that can make rls worse. Sooooo many things to know about rls. Always keep the list of meds known to make rls worse with you at all times, so when a Dr prescribes a med for another condition you can ck to see if its on the do not use med list for rls. You can end up saving yourself alot of misery.
www.rlshelp.org is one of what I think is the best site for info about rls.
good luck and keep us posted as to what is going on with you.
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ViewsAskew
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About the best place to turn when in a situation like this...is one of the two books that Hening and Buchfurer co wrote with some other. One of them is for primary care physicians, the other for patients. Both explain it and discuss what to do.
Buchfurer and Hening advocate immediately stopping it (once the augmentation is problematic) and using a strong opioid to get you through the difficult period of stopping it. Stopping the drug itself is not hard....it's what happens to the RLS when you stop. It usually goes BONKERS!
I tried to stop without an opioid on three occasions. I did not succeed. Each time, by day four or five, I was willing to tell any secret, lie to escape, and would have willingly sold my biological children. Good thing I have none.
Truly horrible. Some people do get through it without help. Bless them; I haven't a clue how.
This tough period lasts from a few days to several weeks. My doc and I tried two opioids; one wasn't strong enough, the next made me sick, so we landed on methadone. It worked so well, that after all was stable, when we were deciding what to do and what to try, my doc suggested just keeping me on it.
It'll be the 4th year anniversary (I think), this April or May.
Buchfurer and Hening advocate immediately stopping it (once the augmentation is problematic) and using a strong opioid to get you through the difficult period of stopping it. Stopping the drug itself is not hard....it's what happens to the RLS when you stop. It usually goes BONKERS!
I tried to stop without an opioid on three occasions. I did not succeed. Each time, by day four or five, I was willing to tell any secret, lie to escape, and would have willingly sold my biological children. Good thing I have none.
Truly horrible. Some people do get through it without help. Bless them; I haven't a clue how.
This tough period lasts from a few days to several weeks. My doc and I tried two opioids; one wasn't strong enough, the next made me sick, so we landed on methadone. It worked so well, that after all was stable, when we were deciding what to do and what to try, my doc suggested just keeping me on it.
It'll be the 4th year anniversary (I think), this April or May.
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.
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.
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Metabolic wreck
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- Joined: Sat Jan 24, 2009 4:31 am
- Location: Arkansas
was Mirapex; now augementation
Wow! I'm truly impressed with the amount of research you guys have put into this. I think I was so focused on my other diagnoses that the RLS kind of got out of hand. It was easy to just keep increasing the dose.
Looks like I have a lot of reading to do... And agony to look forward to.
I know how you feel--if they could figure out a way to duplicate the symptoms, it would be a great interrogation technique, wouldn't it?
I'm just grateful that I sleep okay.
Just a thought---I wonder if I could go on steroids while I was getting off the Mirapex, and that would get me through the agony of withdrawal? A couple of years ago, when we were investigating diagoses, I was on high dose steroids, and I realized as I was tapering off, my RLS symptoms got worse. Which I interpreted as, my MS was contributing to the RLS, and treatment with steroids controlled it. (But I'm not going to stay on steroids.)
I find it interesting that in 10-15%, augmentation occurs. Whenever I start seeing a new healthcare provider, the first thing that I tell them is "I'm always an outlier". Anything that happens in a small percentage of patients is going to happen to me. Sometimes that simplifies the decision-making!
Thanks for all your input--it is very helpful!
The Wreck
Looks like I have a lot of reading to do... And agony to look forward to.
I know how you feel--if they could figure out a way to duplicate the symptoms, it would be a great interrogation technique, wouldn't it?
I'm just grateful that I sleep okay.
Just a thought---I wonder if I could go on steroids while I was getting off the Mirapex, and that would get me through the agony of withdrawal? A couple of years ago, when we were investigating diagoses, I was on high dose steroids, and I realized as I was tapering off, my RLS symptoms got worse. Which I interpreted as, my MS was contributing to the RLS, and treatment with steroids controlled it. (But I'm not going to stay on steroids.)
I find it interesting that in 10-15%, augmentation occurs. Whenever I start seeing a new healthcare provider, the first thing that I tell them is "I'm always an outlier". Anything that happens in a small percentage of patients is going to happen to me. Sometimes that simplifies the decision-making!
Thanks for all your input--it is very helpful!
The Wreck
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ViewsAskew
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That augmentation rate? It's pure fabrication.
No one knows!!!!!
That's because no one studies these drugs for more than 3 months at a time. I have no idea what the rate really is, but Sinemet is suggested to be 70-100% over time. Requip and Mirapex are probably lower, but they could be much higher than 10%. I've seen estimates of 30-35%, too.
To me, what matters is that doctors no very little if anything about this and we suffer from it. I surely wish I knew how to reach them...
No one knows!!!!!
That's because no one studies these drugs for more than 3 months at a time. I have no idea what the rate really is, but Sinemet is suggested to be 70-100% over time. Requip and Mirapex are probably lower, but they could be much higher than 10%. I've seen estimates of 30-35%, too.
To me, what matters is that doctors no very little if anything about this and we suffer from it. I surely wish I knew how to reach them...
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.
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.
One thing I have noticed since first taking mirapex is that while the pain and abnormal sensations in my legs have shown some slight improvement, I still have the uncontrollable need to move my legs constantly. In fact, that has gotten even worse, and my sleep has been worse lately. Is this a case where things get worse before they get better? I really don't understand why it's happening this way.