trying Mirapex
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Anonymous
Hey Em. Just wanted to say that I'm sorry that you are having such a time right now. You have given so much good advice, encouragement, and hope to so many, including me. Meds scare the beajebbers out of me too. I hope your venture with Mirapex will go well. Will keep you in the thoughts and prayers department.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
How does one even titrate down from Requip to Mirapex? Since you have to keep ahead of the RLS it has to be careful to keep the Requip down while the Mirapex is slowly increased, no?
That is a good question as to how long one should keep trying with DA's. I don't know if there is an answer. But regardless, hang in there!!!!!!!!
That is a good question as to how long one should keep trying with DA's. I don't know if there is an answer. But regardless, hang in there!!!!!!!!
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ViewsAskew
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I got those twitches, too. Along with this weird microshaking of my hands. Scared me to death. That, fortunately, went away. The first night was my worst. For me, it got better each night over about a two week period. Of course, by then I'd augmented, but didn't know better, so took more earlier. At least you know what not to do.
The leg pain is a weird one. I've heard of several people with it on Requip. Wonder why?
You could try to cut one of those pills in half and take it before bed when you normally get some sleep. You're right about it hard to get in front of, but maybe if it's taken right before sleep, everything is a little calmer then and it might have a chance to do something and keep you asleep for a while longer. While I imagine you'd give anything to have the symtoms gone during the day, getting a little more sleep would be something that couldn't but help, too. Maybe, too, it would diminish the symptoms on waking.
Of course, I'm just talking out of the side of my head.
The leg pain is a weird one. I've heard of several people with it on Requip. Wonder why?
You could try to cut one of those pills in half and take it before bed when you normally get some sleep. You're right about it hard to get in front of, but maybe if it's taken right before sleep, everything is a little calmer then and it might have a chance to do something and keep you asleep for a while longer. While I imagine you'd give anything to have the symtoms gone during the day, getting a little more sleep would be something that couldn't but help, too. Maybe, too, it would diminish the symptoms on waking.
Of course, I'm just talking out of the side of my head.
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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Mirapex is longer than Requip - if I remember that correctly. It's about 6-8 hours I think. But, I'm guessing that includes the 60-90 minutes it takes before it works.
From what I've seen, the only ones of us with permanent are few and far between. And, from the DAs, the only ones that have written about it (to my knowledge), were on it for a long time after the augmentation started. If you augment severely and you and the doc realize it immediately and stop it, everyone that has posted has said it has gone down within a few days to a few weeks tops. People who augment lightly - some docs still think that upping the dose works. I'm not so sure, but since there aren't studies, who knows? Could just be my paranoia.
Like everything, the single (and daily) dose varies. The average is about .63 or some such. Some people get by on a half of a .125. Some people have posted they take 4 or 5 mg at a time.
From what I've seen, the only ones of us with permanent are few and far between. And, from the DAs, the only ones that have written about it (to my knowledge), were on it for a long time after the augmentation started. If you augment severely and you and the doc realize it immediately and stop it, everyone that has posted has said it has gone down within a few days to a few weeks tops. People who augment lightly - some docs still think that upping the dose works. I'm not so sure, but since there aren't studies, who knows? Could just be my paranoia.
Like everything, the single (and daily) dose varies. The average is about .63 or some such. Some people get by on a half of a .125. Some people have posted they take 4 or 5 mg at a time.
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.
Em,
I don't have any advice - I augmented on both Requip and Mirapex. I just wanted to let you know that I'm thinking of you and I have all fingers and toes crossed that this will be the ticket for some relief. I also want to encourage you not to panic if you experience augmentation with Mirapex - it might not be permanent. I augmented on it and as soon as I got it out of my system, things calmed down. Hang in there, love. I'm with you.
I don't have any advice - I augmented on both Requip and Mirapex. I just wanted to let you know that I'm thinking of you and I have all fingers and toes crossed that this will be the ticket for some relief. I also want to encourage you not to panic if you experience augmentation with Mirapex - it might not be permanent. I augmented on it and as soon as I got it out of my system, things calmed down. Hang in there, love. I'm with you.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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ViewsAskew
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Well, that would be the most expensive one that we can't get in the US - Cabergoline. But, I can't say I've heard much about Permax and augmentation. Could be that it just wasn't prescribed as much here in the US, so not as many people to write about it, though. Maybe Corrie or Nadia would know more because I seem to think it was prescribed more in Australia and Europe (definitely the Cabergoline, but I think also the Permax). Requip supposedly has a lower rate than Mirapex, but a couple years ago at the conference I seem to recall one of the docs saying they thought it was because it hadn't been used as much and that it would even out with Mirapex. Again, no studies on ANY of these, so all of it's anecdotal based on what we hear on the boards and what the physicians see in their offices.
The new patch that is in study is "supposed" to resolve the augmentation issue. I wonder if you could get in a study somewhere?
The new patch that is in study is "supposed" to resolve the augmentation issue. I wonder if you could get in a study somewhere?
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.
HI everyone!
Em, I think you have a good point, it would be best to catch it early than later and the DAs might work better.
Like you if I had know at 30 that what I suffered from had a name or a treatment I might have done better.
With that I am finding out that I happen to be just one of those people that is difficult to help with medications. But I have found that part of my RLS is just over the top like yours and hard to treat, thankfully I stand below on the ladder of hard people to treat........having said that I would trade places with you if I could.
Not that I could handle it better or with more grace than you have my dear....
because you have! READ THAT AGAIN EM! YOU HAVE.....just that I would trade you, just for you.
This is not an easy disorder to live with at any stage and at some point we just have to decide or make it happen. I'm not giving up and as I have not been around much I could understand if you or anyone thought I gave up.....but I have not.
Just have a full plate at home and haven't been able to dig my way out as yet.
I love you Em.......come with me on the hope train. We'll wiggle, scratch, scream, and cry, but I promise more of smile and laughter. Joy does happen in life. It does. It will my sister. It will.
My heart, the moon, and big hugs,
Lynne
Em, I think you have a good point, it would be best to catch it early than later and the DAs might work better.
Like you if I had know at 30 that what I suffered from had a name or a treatment I might have done better.
With that I am finding out that I happen to be just one of those people that is difficult to help with medications. But I have found that part of my RLS is just over the top like yours and hard to treat, thankfully I stand below on the ladder of hard people to treat........having said that I would trade places with you if I could.
Not that I could handle it better or with more grace than you have my dear....
because you have! READ THAT AGAIN EM! YOU HAVE.....just that I would trade you, just for you.
This is not an easy disorder to live with at any stage and at some point we just have to decide or make it happen. I'm not giving up and as I have not been around much I could understand if you or anyone thought I gave up.....but I have not.
Just have a full plate at home and haven't been able to dig my way out as yet.
I love you Em.......come with me on the hope train. We'll wiggle, scratch, scream, and cry, but I promise more of smile and laughter. Joy does happen in life. It does. It will my sister. It will.
My heart, the moon, and big hugs,
Lynne
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walkindafloors
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Emily, when I first started with Mirapex the 1.25 did nothing then after just a couple of days I went to 2 QD and it did work...for about 6-8 weeks before the augmentation began. Fortunately, it did not make me sick or weird. After reading some of the replies to this post, I'm wondering if it did augment or if what I was experiencing was the side effect of leg pain? My legs feel like rubber bands stretched as tight as can be and if I try to bend or stretch, the pain runs up/down my legs. This has been going on for 4-5 months now, although not everyday, I'm spending 4-5 nights a week up walking, sometimes getting relief around 6 am so I can sleep for a whopping hour or two before getting up and off to work.
I know most folks talk about the augmentation on Sinamet but it worked for me for 3 years before the augmentation set in. I took a 6 month break and am back on the extended release for the day time symptoms and it is working about 80% of the time.
If the DAs don't work well for us 24/7 folks, where do you go from there?
My neuro took me off the mirapex (cold turkey so was wondering if you have to titrate these?) and now Sinamet TID instead adding the Ultram at bedtime...we'll see (and hopefully sleep).
I am keeping you in my prayers, Emily, cause after being up all night then pain all day, it's so hard to deal with any little thing let alone LIFE!
I know most folks talk about the augmentation on Sinamet but it worked for me for 3 years before the augmentation set in. I took a 6 month break and am back on the extended release for the day time symptoms and it is working about 80% of the time.
If the DAs don't work well for us 24/7 folks, where do you go from there?
My neuro took me off the mirapex (cold turkey so was wondering if you have to titrate these?) and now Sinamet TID instead adding the Ultram at bedtime...we'll see (and hopefully sleep).
I am keeping you in my prayers, Emily, cause after being up all night then pain all day, it's so hard to deal with any little thing let alone LIFE!
Who took the FUN out of disFUNctional?
Kim <><
Kim <><
I've hit rock bottom- am trying mirapex
Hi Emily First I want to say Happy Anniversary. You are definitely in my prayers everynight.
I have tried Mirapex just twice and got real dizzy all day and night this past Thursday. Do not know if this has anything to do with it as I have only taken it twice. I have other things on my mind so that could be the cause of it. I am definitely not experiencing what you are going through.
Oh Em, I wish I could take this away from you as if I could I would do it in a heartbeat.
I have tried Mirapex just twice and got real dizzy all day and night this past Thursday. Do not know if this has anything to do with it as I have only taken it twice. I have other things on my mind so that could be the cause of it. I am definitely not experiencing what you are going through.
Oh Em, I wish I could take this away from you as if I could I would do it in a heartbeat.
Charlene
Taking one day at a time
Taking one day at a time
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ViewsAskew
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Happy Anniversary! I hope you have a suspended moment of magic that keeps you away from the RLS for awhile.
This is going to sound crazy, but Dr Rye told me this at a conference a couple years ago. He had someone who was experiencing horrid RLS (can't remember the circumstances) and he gave her a large dose right away instead of titrating slowly. He said that he knew she'd have an awful week of side effects, but that she needed relief and this was the best way to get it.
Seems that this might be a way to find out if it helps the RLS. Some people find no help at all from Mirapex until they get upward of 2 mg, and if you titrate slowly, you might quit before you get there. Yep, you might get hammered with side effects. But, if you took a .5 mg dose tomorrow night, at least you'd see if it had any effect. If it didn't, maybe a 1 mg dose the next night. If it had noeffect on the RLS, then you could try 1.5 the next night, and then 2 the last. At that point (in four days) if you had no relief you could probably say that this med wasn't going to help. Then you wouldn't spend weeks trying to increase it only to get to the same place. Again, you might have horrid side effects, but you could get some nausea meds to help with that part of it. The hard part would be deciding about the side effects - they often lessen over time and doing it this way would make them very strong - you might feel overwhelmed by them and not want to take it anymore even if it did help.
If it did help, then you could decide what to do - stay at that rate and deal with the side effects, immediately cut down and slowly titrate to avoid the major side effects, etc.
This is going to sound crazy, but Dr Rye told me this at a conference a couple years ago. He had someone who was experiencing horrid RLS (can't remember the circumstances) and he gave her a large dose right away instead of titrating slowly. He said that he knew she'd have an awful week of side effects, but that she needed relief and this was the best way to get it.
Seems that this might be a way to find out if it helps the RLS. Some people find no help at all from Mirapex until they get upward of 2 mg, and if you titrate slowly, you might quit before you get there. Yep, you might get hammered with side effects. But, if you took a .5 mg dose tomorrow night, at least you'd see if it had any effect. If it didn't, maybe a 1 mg dose the next night. If it had noeffect on the RLS, then you could try 1.5 the next night, and then 2 the last. At that point (in four days) if you had no relief you could probably say that this med wasn't going to help. Then you wouldn't spend weeks trying to increase it only to get to the same place. Again, you might have horrid side effects, but you could get some nausea meds to help with that part of it. The hard part would be deciding about the side effects - they often lessen over time and doing it this way would make them very strong - you might feel overwhelmed by them and not want to take it anymore even if it did help.
If it did help, then you could decide what to do - stay at that rate and deal with the side effects, immediately cut down and slowly titrate to avoid the major side effects, etc.
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.